The Welborn Family

Day +174

2012-01-26T15:08:00.001-08:00

Well, a few things have happened since my last post. About 2 weeks ago, we went to the clinic two days in a row for a high dose infusion of IVIG. We went back last week and Caleb's platelets had gone up from 59K to 62K. That's not exactly the leap we were hoping for, but at least they hadn't gone down.

Then this past Saturday, Caleb was acting really crabby and clingy all day and after his nap, his head felt warm to me. I took his temperature and it read 102, so I called the BMT unit and, as we expected, they told us to bring him in to the ER to get checked out. We went in, and they ran a bunch of tests and started him on Vancomycin (big gun antibiotic), then one of the BMT fellows came down to see us and let us know that we were going to be admitted until his blood cultures came back (at least 48 hours).

I'd forgotten about that little policy, as we'd only experienced it once with Ayden, so we were completely unprepared. Fortunately, Ty was able to bring us some necessities and we were fine. So Caleb and I stayed in the hospital from Saturday night until Monday afternoon. He didn't have any more fever after Saturday and was acting fine. He did develop a runny nose and was sneezing a bit, so he might have some minor cold virus or something, though his nasal wash came back negative for all the most common ones (RSV, rhinovirus, etc). What bothered me most while we were there was that his platelets were down to the low 40s both Sunday and Monday.

Today we went back for his clinic appointment and saw one of the fellows who works with Caleb's main doctor. Caleb's platelets were back up in the 60Ks (yay!) and his white blood cell counts were up from having been a little low before, so all of that was good. Basically, he's stable. The big question still is whether his low platelets are being caused by post-transplant ITP or by WAS partially resurfacing due to the mixed chimerism. Dr. Shyr, the fellow, sent a test for platelet antibodies in Caleb's blood. If it comes back positive, that'll be a good indicator that ITP is the cause of the thrombocytopenia (low platelets), and we can just kind of wait it out. If it's negative, that might point more towards the chimerism being the cause. The test isn't perfect and can turn up false negatives, but with most ITP cases, there's a substantial number of antibodies, so it would be unlikely not to pick some up.

I had a good talk with Dr. Shyr. We agreed that, as Caleb's condition is currently stable, there is no reason to rush into aggressive treatment options like a second transplant. He indicated that there are ways at least to try to bring the chimerism up gradually instead of starting back at square one. And as Caleb has already had some GVHD, and would, therefore, likely get it again, Dr. Shyr also commented that it's easier to deal with a mixed chimerism and low platelets than to treat a full-blown chronic case of GVHD. Basically, with him stable, we have time to make sure we're making the best choices and not rushing into anything based on fear. Caleb's not even a year old yet, and the best window of opportunity for WAS transplants doesn't close until after a child is 5 years old.

While I'd much rather the chimerism be up, the platelets be up, and for Caleb to have no GVHD (i.e. a perfect world ;), this discussion did relieve some of my stress. It basically translates: he's healthy and well with no major issues. We have to be careful about him hitting his head or falling and watch for GI bleeds, but otherwise, the platelets aren't too much of an issue. We've got time to look at all the options and make a very informed decision. All in all, pretty good news.

Other than all that, Caleb is probably about a week away from being a full-blown walker. He's taking 5 and 6 steps at a time and trying all the time! :) Also, I got a bike and a bike trailer for the kids so I can finally start exercising again. We've gone out for a few rides and it's clear I'm going to have to slow down a bit and shift to a lower gear. My knees are not liking my 0 to 60 approach. :) The hospital stay derailed my efforts, but I'll be getting back on track very soon.

Please continue to keep us in your prayers. For Caleb's continued and improving health, for Ayden's attitude (it's a miracle he hasn't been strangled yet), for Ty as he continues to work himself to death, and for my general outlook and energy level. I swear, I look in the mirror and I just look tired all the time, no matter what. I know there's a good reason for that, but I miss the life that I used to have in my eyes. I'm just so worn and tired and the continued stress has taken a toll on my health and energy levels. I keep fighting against it, but it's still there.

Thanks everyone! Love you all!

Day +154

2012-01-06T13:05:00.000-08:00

OK, we went to the clinic today after 2 weeks off (nice!). Caleb's platelets had gone down a little, from 98K to 66K and his chimerism from his last appointment was about the same (they drew another lab for it today), roughly 20% - 30%. BUT his other counts are all good. The white and red blood cells are fine, the size of the platelets is fine (WAS patients' platelets are usually smaller than normal), etc. SO, his doctor said that because it's only the platelets that are low, there's a possibility that he's just experiencing ITP (immune thrombocytopenic purpura), which is a possibility post-BMT and is unrelated to the chimerism. Basically, it just means that something about the BMT process has caused his platelets to be lower than normal, but is only affecting the platelets. Usually, ITP clears up on its own after a while, with the help of IVIG. The doctor's exact wording was that she didn't want to be "fooled" into thinking it was related to the chimerism if they're actually unrelated.

What all this means is that there's a chance Caleb doesn't need a second transplant. If we can be reasonably convinced that his platelet counts are unrelated to his chimerism, he may only need the "top off" of stem cells we were looking at before, which would not include a hospital stay or any chemotherapy. *\o/* <----That's a cheerleader, if you couldn't figure it out. :)

So the plan right now is to go back into the clinic both Thursday and Friday of next week for IVIG infusions. Hopefully the high dose will help boost his platelet counts by protecting them from being destroyed (as I understand, IVIG sort of coats the platelets and acts like armor). Then we'll go back again, probably in a week, and see where his platelets are and basically go from there. Everything's still pretty up in the air as it all depends on his other blood counts holding steady, his platelets not getting too low, and the chimerism not dropping anymore. We just have to wait and see. BUT, it's the first glimmer of hope we've had in a while, so I'm still pretty pumped.

Please keep the prayers going up like crazy! I SOOOOOO do not want my little boy to suffer any more than he already has. Thank you all! We love you!

Day +146

2011-12-29T08:00:00.000-08:00

Well, the news has not been great. A couple of days before Christmas was Caleb's last clinic appointment, and they let us know that his chimerism has gone down to only 20% donor. His platelets, oddly enough, had gone up from 79K to 98K, so that was good, but it won't save him from having to go through the transplant process again if that chimerism doesn't somehow boost on its own. In the good news, he's doing well enough that we don't have to go back for two weeks, so his next appointment is on the 6th. We'll go back again two weeks after that, and they'll start making some decisions based on what's happening. If the chimerism doesn't go up or goes down, the choice will be between another transplant with chemo or another transplant without chemo. The nurse practitioner mentioned the possibility of using a different donor, but the doctor said nothing about that, which usually means that possibility is a long time in future after several other things are tried first. I'm not sure what the time frame for another transplant will be, but it will be another hospital stay, regardless.

Other than that, things have been pretty good. We had a good Christmas. We got to go to Mom's and hang out for a little bit on Christmas Eve. One of my nieces was sick, so we ended up going home earlier than we planned and having Christmas morning at our own house just us, but it was still fun. Ayden got a kitchen play center from Santa, and was very excited about that. It's so much more fun now that Ayden is old enough to understand about Santa coming and all the other fun stuff. Of course, it was pretty funny that morning when he got up and saw the remnants of cookies and milk Santa left and said, "Santa ate my cookies? Santa drank my milk?" :)

It's been great having Ty home over the holidays. Definitely not looking forward to him having to go back to work in a few days. We got to go to lunch with his two best friends on Monday and then I got to have a girls' night with my friend Jenny that evening. Today I get to get a pedicure for the first time in a couple of months, so I'm super excited. :)

Please continue to keep us in your prayers. Best case scenario would still be for Caleb's chimerism and counts to go up on their own, but regardless of what happens there, please pray that the doctors will make the best possible choice and that Caleb will end up healthy and happy, however it has to happen.

Love you all!

Day +136

2011-12-18T07:39:00.000-08:00

So things are not going exactly as we'd hoped. The PICC replacement and bone marrow aspirate got moved back to Thursday and Friday of last week respectively. The PICC placement went fine. Caleb fought the sedation like crazy, and ended up getting 5 doses of it before he finally gave it up. Thanks to that, he was extremely groggy and cranky for the rest of the day. Friday we did the bone marrow aspirate, which also went well. Caleb was already asleep when they did the sedation, so he didn't fight it and didn't need as much. He woke up in a good mood, smiling and playing, fell asleep on the ride home, woke up when we got there and immediately started crawling around and playing. Unfortunately, it seems like his hip starts bothering him significantly after a few hours of sleep, probably getting stiff and sore, so we've had a couple of hellacious nights in which he's woken up after the first couple of hours and refuses to be put back down. He won't even sleep on me in my bed, just in the rocking chair. It was marginally better last night, but not enough that either Ty or I feel rested.

Worse than no sleep, Friday when we checked in at the BMT clinic before Caleb's surgery, his platelets had gone down from around 100K to 79K, meaning that his new marrow is losing its effectiveness more and more. If this trend continues, a second transplant is almost guaranteed. We don't have any real time frame yet, but I assume it won't be too long, especially if the counts keep dropping. The rest of his counts are fine, but the platelets just keep going down.

So that's where things stand right now. We won't have the results of the aspirate for a week or two, but I'll update when we do. Please continue to keep us in your prayers. We'd like Caleb's chimerism and counts to go up without a huge GVHD flare, preferably without a second transplant.

Love you all!

Day +129

2011-12-11T21:08:00.000-08:00

So, Caleb is doing mostly ok, but not great. Basically, his chimerism (ratio of donor cells to his own) is still about 50/50 right now. It's steady, so that's good, but his blood counts are also a little low--platelets around 100K--which might indicate that the marrow is not working as well as we'd like it to. We're going to do another bone marrow aspirate Tuesday so they can get a closer look at the cellularity and see how well it's working. If it doesn't improve, in a few months, he may have to have basically a 2nd transplant. They've got extra cells from the donor stored up, enough that they could transplant him up to 3 more times. He wouldn't have to go through the chemo again, but they would give him some of the heavy duty immune suppressants (Campath) that are pretty hard on him too, so it would be another hospital stay and probably more isolation. It's kind of a wait and see game right now. They are weaning the Cyclosporine (immune suppressant) again, hoping that will help the donor cells to take over more and hopefully drive his counts up so he wouldn't need another transplant. His rash has stayed well-controlled with the topical ointments, so the weaning is going much more smoothly this time.

I did end up in the ER with him a couple of nights ago. I flushed his PICC lines at night like normal, then looked at the dressing and realized that a good bit of the fluid ended up under the dressing instead of in his line, which meant there was a leak somewhere. It was totally ruined, and they just had to pull it. Since he's had a bit of a skin GVHD flare up, the skin under the dressing was already very irritated since it was the only place I couldn't get the topical ointments. Several hours under salt water (saline) and heparin definitely did not help, and he had a really nasty looking spot there. It's looking lot better since we've been able to get topical ointments on it. They gave me an antibiotic ointment and an anti fungal to put on it, and it's helped a lot. He'll have to have another line placed in a few days, but hopefully they'll be able to use a different vein so that skin will be able to keep healing.

So that's basically it right now. We're just waiting to see what his counts do and if he needs that second transplant. I imagine the hospital stay would be shorter since we wouldn't have to factor in 10 days for chemo, but I'm not sure how much shorter. I'll try to get more details on that next time we're in clinic.

Other than all that, he's doing awesome. He's crawling like crazy, pulling up on stuff, trying to stand on his own, babbling like crazy. He'd be the picture of health if we didn't know better. He cracks us up all the time. He managed to crawl his way all the way up the stairs several times today. :) With Ty right behind him, of course. We have to keep a gate in front of the stairs now, or he'll try it on his own every chance he gets.

So please just continue to keep us in your prayers. The best-case scenario would be that weaning the Cyclosporine drives his chimerism up and his counts go up with it and we can keep the GVHD at bay with topical ointments. But we're willing to do whatever it takes to get him healthy. Still. The best-case scenario would be nice. :)

Love you all!

Day +117

2011-11-29T21:54:00.000-08:00

So things have not been quite as smooth as we'd like, but we're still doing ok. Caleb's chimerism has been stable at around 50% donor. Last week, the day before we left for Fredericksburg, the doctors took him off the immune suppressants to see if it would drive his chimerism up. His rash had cleared up with the help of topical Triamcinolone cream. About a day and a half after he stopped the Cyclosporine, his rash started flaring with a vengeance all over his body. There's no doubt now that it's GVHD. We kept applying the Triamcinolone, but this time it didn't seem to help at all. So, we finally called the inpatient unit and talked to a doctor. He consulted with the doctor who regularly follows Caleb and they decided to put him back on his very low dose of Cyclosporine. Of course, we were in Fredericksburg, and I was totally sure I'd left the Cyclo at home since he'd been taken off of it. We called every Walgreens pharmacy within a 3 hour radius, including Austin and San Antonio, and not one of them had Cyclosporine in stock. Just before we were about to lose hope and go home so he could have his medicine, it dawned on me that I'd taken it with me to the clinic on Tuesday and, as far as I knew, had not taken it out of the bag. I was right! :) So we didn't have to leave Fredericksburg and drive 5 hours home after all.

He's been back on the Cyclo for about 5 days now and his rash hasn't improved dramatically, but it hasn't gotten worse either. It does actually look a little better in some places, so that's encouraging. Today was his normal weekly appointment. The doctor said that, in one way, it's good that the rash flared a bit, as it indicated that the graft (new marrow) is working and making a difference in his body. We just don't want it to get bad. He kept him on the low-dose Cyclo and increased the topical applications from twice a day to 4 - 5 times. The goal is to control the rash exclusively with topical medications, getting Caleb off of the immune suppression completely and allowing the donor cells to take over completely. We're going back in on Thursday so they can see how the rash is responding.

Unfortunately, Caleb's platelets were down to about 100K as well. If they continue to drop, it indicates that he may need a "top off" dose of bone marrow. If that happens, he'll have to go back to a higher dose of Cyclosporine to prevent serious GVHD. Right now, everything is basically just "wait and see." Everything depends on all the variables: his rash, his chimerism, and his counts. A small change in any one of the variables precipitates a different course of action. Best case scenario, the GVHD is controlled by the topicals, he gets off the immune suppression again without another flare up, his chimerism rises, and his counts get back up to normal. Worst case (at least as bad as I'm emotionally willing and able to entertain), we'll go through the entire transplant process again.

So please be praying for the best case scenario. There are several acceptable in-betweens that would be ok too. Hopefully this can all be resolved relatively quickly and easily and we can be "normal" (whatever that is) again. :)

Thank you all so much! Love you!

Day +97 - Setbacks

2011-11-09T04:17:00.000-08:00

We went to Caleb's weekly appointment yesterday. The results of the bone marrow aspirate were in and were at least a little encouraging. His cellularity, or the balance between the types of blood cells (white, red, immature, etc) in his blood, was good, indicating that his marrow is working and doing its job. The discouraging part is that as of last week, his chimerism has dropped even more, closer to 50% donor cells now.

Where we go from here, depends on a couple of things. They are considering giving him an infusion of t-cell lymphocytes which would boost the donor's immune system, therefore driving the chimerism up. The problem with that is that Caleb has a little bit of a rash on his back. In the doctor's words, "It sort of looks GVHDish and sort of doesn't." If it IS GVHD, boosting the donor's immune system will make it worse, and even if this particular rash is not, boosting could still cause GVHD. So, they prescribed a topical ointment and said we'll see how the rash responds to it before going ahead with an infusion. This is the same reason they don't want to completely take him off of his immune suppressants yet. It's possible the chimerism would rise without them, but if he's got GVHD a little bit now, it could go crazy without the suppression.

The doctor said she's going to do some research specific to WAS patients about how low the chimerism can be and them still be ok. It is possible for WAS patients, or any patient with no malignancy, to live with mixed chimerism and be fine. The problem is if it drops too low and start affecting the other counts (platelets, ANC, etc). If it gets to that point, it looks like the answer is to re-transplant. Yeah. Put Caleb and our family through another BMT. The doc told me that they have enough cells from the donor stored up to re-transplant up to 3 times if necessary. I am trying really really hard not to think and stress about this option until such time as it is for sure the way we are heading. Obviously, I'm glad it IS an option, as we'll do anything to save Caleb's life. But oh. my. God. We really really really really really do not want to go through all of that again. We're finally just 3 days away from this amazing celebratory point, +100 days post, and I feel like we've fought tooth and nail to get here, just to hear that we may have to do it again. Again, no fight is too much for our baby boy, but if there is any way we could be spared this one and him be healthy, I'd prefer it.

So for now, we're just waiting and watching. Watching his rash and watching his chimerism. Fortunately, all of this doesn't effect the lifting of social isolation on Friday, so we'll still be able to get out and see a few people and enjoy a little semi-normalcy, at least for a while.

So, prayer requests are:

1) That Caleb will continue to remain infection-free, especially once social isolation is lifted and we're allowed out into the world again. It's exciting and a little scary at the same time.

2) That his chimerism will rise and not drop any further.

3) That his rash will clear up, and that it's not GVHD and no GVHD develops.

4) For strength for our family to deal with these setbacks. For us to have a good attitude and not to give in to worry and speculation.

5) For God to provide us a way through this.

6) Wisdom for the doctors and that they make the right decisions.

Thank you all so much! We so appreciate all your love and support!

And just so it doesn't look like we've forgotten our other son, here is Ayden, happy with a diaper on his head. :)

Day +83 - sigh

2011-10-23T09:34:00.000-07:00

So, everything's been going really well, but at today's appointment, they told us that Caleb's chimerism (ratio of donor cells to his own cells) is at about 76%, meaning that while his marrow is predominately the donor's, there is still some of his in there too. This isn't necessarily a big deal. It can easily happen as a result of the immune suppressants he's on. We just stopped his Prednisolone (steorid), and are weaning his Cyclosporine (immune suppressant), so there's a good chance we'll see the engraftment go up because of that. They also instructed me to hold his Ganciclovir (anti-viral) for a bit as it can effect counts as well, and his CMV testing has all been negative. Because TCH is so proactive, they've scheduled a bone marrow aspirate for this Friday. Basically, Caleb will be sedated and they'll use a tiny drill to drill into his hip socket and extract a little bone marrow. They can get a much more accurate chimerism count with that and also check how many white, red, etc blood cells he has and make sure all of that is normal. If it's too low or looks odd, they'll probably request extra cells from the donor as a "top off" for Caleb. He won't need any more chemo or anything, and it won't even require a hospital stay, but if it's necessary, that should help boost his counts a bit.

It is possible for a WAS patient to be just fine with a mixed chimerism. It would be much more serious for a leukemia or other cancer patient. I'm not exactly sure why, but I'm guessing because WAS doesn't "recur" like cancer does. It's only an issue if his counts (white blood cells, red blood cells, platelets, neutraphils, etc) start dropping dramatically as well. Right now they're a little low, but still in a good range. Still, it makes me nervous. I know very well how blessed we are and that other people have struggles so much harder than this one, but I'm also just so tired, and the continued stress is starting to take effect physically, psychologically, and emotionally. I wish I could have just one day to go sit alone in a hotel room and allow my body and mind to process through everything, because I never really have the chance to do that. Prayer is very difficult for me right now. I've heard all my life that prayer changes things, "The prayers of a righteous man availeth much," "if you're going to pray for rain, you better bring an umbrella," but I also see many people praying hard with tears and pleading, laying everything before the Lord day in and day out ... and nothing changing. All around me, I see evidence that prayer doesn't change situations. Don't get me wrong; I'm not losing my faith. I just don't think I understand prayer very well. When I pray honestly with my whole heart, usually with tears, I do feel a peace that doesn't make any sense, and I do feel comforted. I'm just very confused on the idea of the power of prayer in changing situations. It seems to me that God's will is going to be done no matter what I pray. In 90 Minutes in Heaven, Don Piper told about a friend of his who visited him in the hospital at a point when Don genuinely wanted to die and go back to Heaven. His friend told him, basically (paraphrased), "You don't have to do anything. We will pray you through this. You don't even have to want it. We will have faith for you." I think that's what I need right now.

So between clinic appointments, we hang out at the house and walk to the park some days. Ayden plays on the playground while Caleb and I sit with him in the stroller, under a rain guard if there are people around. The weather's been so beautiful, we've been going to the park a little more often.

I took Ayden to the doctor last Wednesday. He hadn't had a regular check up in a long time, so we thought it was time. I told the doc about all the things he's afraid of and some of the other problems he's been having, and the doctor said it sounds like he has classic separation anxiety. It makes a fair amount of sense. We moved, then suddenly Mama and Daddy and Caleb were gone for a month, and he only saw us a few times, then we came home and suddenly the people he'd been with for a full month weren't around anymore. The result has been that he develops phobias out of nowhere -- everything from birds, to bugs, to rain and thunder. And I really mean phobias. He becomes completely debilitated when he sees one of these things. He also very suddenly decided he was scared to be alone in his room. We had a couple of very hard nights trying to get him to sleep in his bed again. That has improved greatly, thank goodness. He's not quite where he was before, when we could just turn out the light, shut the door, and leave, but he's at least sleeping alone all night. We're also trying to give him ways to deal with his fears when they come up, such as clapping and yelling "Go away, birdy!" when he sees a bird that scares him. He is getting better gradually, and I'm sure things will improve even more with time.

We've got 17 days left until Caleb is 100 days post-transplant! The nurse practitioner said today that all the chimerism stuff doesn't effect that, so that's good. I'm so ready to feel like we have just a little more freedom, even though we will still, of course, be cautious. We just have to take it all one day at a time and deal with each as it comes.

So prayer requests for now:

1) That Caleb's chimerism will get back up to 100% very quickly.

2) That Caleb will eat better and better. It still fluctuates a great deal.

3) That Caleb will continue to be protected from infections.

4) That Ayden will overcome his fears and insecurities, and that Mama and Daddy will be able to help him patiently and lovingly to achieve that.

5) For strength and calmness for me, and probably for Ty as well, though he seems to handle things a little better at this point. At least he doesn't break down in tears every time there's a small change in the routine.

6) For all the other families out there dealing with hard things. It's easy to forget in the middle of the storm how blessed we really are.

Thank you, everyone. We love you.

Day +69

2011-10-10T04:51:00.000-07:00

Things have continued going really well, praise God. Caleb's counts dipped just a bit early last week, but were rising again by Thursday. They think it was just a response to the rhinovirus that he's still fighting off. Apparently this particular virus can hang on for over 100 days, so we may remain in the isolation rooms at the clinic for a while. I can't wait till he's over it, though, because Ayden enjoys playing in the waiting room. The best news is that Caleb's eating is FINALLY improving! I asked the doctors about a week and a half ago if we could do a trial run of a few nights without the TPN. I felt like, as one of my fellow WAS moms put it, if he was getting his nutritional needs, there was really no reason for him to increase his intake. The doctors agreed since there was no real reason he shouldn't be eating better at this point, so I stopped giving him the 12 hour nightly infusions. His eating has climbed very steadily ever since! In fact, yesterday, he was only 4 calories shy of what he actually needs to get in a day. He's still kind of figuring out his appetite, so there are many instances where he will drink 2 oz of formula, then an hour later drink 2 more, but that's ok. Well, it's ok other than all the bottles I'm having to wash. :) More and more often he's completely draining the whole 4 oz in his bottle, so I'm planning to start putting more in soon.

Also, we've dropped down to once a week appointments now! It's so nice to be at home and able to get some things done instead of constantly having to rush off to the clinic. Of course, it cuts into my social interaction, since while we're on isolation, I mainly talk to nurses, but that will be ending soon enough. :) So we're still just being vigilant, trying to keep any infections away from Caleb while showing Ayden as good a time as possible. We go for walks in the park fairly often and let Ayden play on the playground while Caleb sits in his little bubble in his stroller. If I do it during his morning nap, it works out really well, actually. He'll sleep through it and when he wakes up, we head back. I know Ayden is bored to tears a lot of days. He starts getting REALLY annoying in the afternoons, but I know it's just because he's so bored, and sometimes exhausted as very often there are men working on the outside of the house, often on the wall right outside his room during naptime, making it impossible for my cowardly little guy to sleep. Oh well. They've got to finish sometime, right? Right???

Ty had a really good birthday last week. Saturday a few of his friends came over for dinner and hung out for a while, which was great. I wish I'd gotten to spend a little more time with them, but Caleb woke up and demanded to be rocked again in the middle of the whole thing. Ayden got to stay up late so he could have some cake, as he'd been eyeing it all day. :) It's been such a hard year for us and our family, it feels good to have something to celebrate.

So, we're just trucking along to Day +100 now, which will fall on 11/11/11. :D I was so glad when I saw that date. Ayden engrafted on Easter and his Day +100 was on July 4th, Independence Day, which I always thought was cool and appropriate for the lifting of isolation. I wanted something cool like that for Caleb, but didn't really think there could be anything at this point in the year. I always took those dates with Ayden as kind of a sign that everything was going to be ok. It's nice to have something kind of cool and similar with Caleb. I know that's dumb and a little superstitious, but who knows? Maybe it is God just trying to keep me hopeful.

Our prayer requests now are:

1) That Caleb will continue to be protected from infections.

2) That his eating will continue to improve and maintain at a good level.

3) That we'll find some good outlets for Ayden and he'll have a little patience with us.

4) For our BMT buddies, specifically Lukas and Max this week.

Lukas has been in and out of the CCU ever since his transplant a few weeks ago. He's doing better now, back in his normal hospital room, but still needs our prayers.

Max is a couple of years post-BMT, but still dealing with extreme skin GVHD and is back in the hospital now getting strong antibiotics for a staph infection in his lines.

Thank you all! Love you!

Day +55

2011-09-27T20:09:00.000-07:00

Nothing earth-shattering to report this time, which is great! :) Just felt like it was time for an update. Things have been going pretty well, with a few rough patches thrown in there. The problems Caleb was having per the last post did seem to be related to his Cyclosporine levels and nothing more severe, which is wonderful. His dosage was adjusted and he seems a lot happier. His counts are all beautiful, going up or remaining steady exactly as they should. It's soooooo nice to get the sheet of lab results which shows the results from the last 4 or 5 appointments as well as that day's and see that his platelets have been in the 200+ K range for well over a week now. So beautiful. His blood pressure's been a little all over the map, ranging from 65/41 (too low) to 110/70 (which is fairly high for a 6 month old). He's on Amlodipine because it was consistently high while we were inpatient. The doc said if it's low again Thursday, we'll go to once a day with it instead of twice. We've been weaning his Prednisolone (steroid) a little at a time. We're down to 0.8 ml once every other day. So far, so good! We've gone to having clinic appointments just twice a week instead of 3 times. Soooo glad about that. Tomorrow will be the first Wednesday since our discharge that we haven't gone in. Every day that we're home feels just a bit more "normal" than other days, and I really love them.

The only thing really giving us any problems is still just his eating. *sigh* It seems like every time I think it's really picking up, it drops right back off. So frustrating. BUT, if this is the only complication we're having post-transplant, I'll take it. He's still on 12 hour TPN overnight which gives him about half his nutritional needs, he's eating some baby food every day and taking several bottles, just not drinking enough from each. He should be drinking somewhere between 6 - 8 oz 6 to 8 times a day (less with baby food), but he's drinking 1 to 4 oz 4 to 5 times a day. The nutritionist has had us start adding just a little extra formula per ounce of water to his bottles to fortify it a bit, so we'll see how it goes.

He went through a few days where he was waking up and staying up for a bit at night, not eating, just waking up. I was going a little crazy with it. Fortunately, he seems to have settled back down into just waking up once at night, taking a bottle, and going back to sleep. He usually wakes up around 6, but if I get him quickly and rock him, he'll fall back to sleep then he'll sleep in bed with us for another hour or two after that. :)

Other than that, he's starting to really look like a post-BMT baby. His eyebrows have darkened significantly from the medication, and have started forming a unibrow, he's got a discernible mustache, and there's fine hair growing in all over him. His hair on his head was so crazy, super thin on one side, full on the other, looking like a combover so badly, we decided to shave it with Ty's trimmer. He's got a lot of new growth, so we figured it could just all grow in together. I didn't think it would make him look so different, as what he had was so thin anyway, but it really did! Between the dark eyebrows, high forehead, and baldness, he looks like a mini evil mastermind. :D Fortunately, he's still got a blindingly sweet smile, so it overrides that.

Ayden had me scared pretty bad yesterday. He kept very randomly bursting into tears like he was in some kind of serious pain all day long. I made him a doctor's appointment for today, but by evening, I was just about ready to take him to the ER. He just seemed to be in so much pain, and I was worried that he might have had another UTI or something. I thought maybe the pain was coming when he urinated. But he kept saying, "Hurt poopoo," but he didn't poop or pass gas all day, so I wasn't sure. About the time I called Ty to tell him I was thinking about taking him to the ER, he FINALLY produced a stool. After that, he was completely better. Geez. As anti-climatic as it was, I was glad that's all the problem was, even willing to wait through the 14 minutes of hold music it took for me to cancel the appointment at the doctor's office.

So, other than that, we're still working very slowly on getting everything set up in our new place. We've still got boxes sitting around and a few things we can't find anywhere. I know a lot of people who just can't stand the boxes and when they move, get everything unpacked and put up in 3 days max. Yeah, I have no idea how you people do that, especially the ones with kids. Even if I'd been home every day and not dealing with all of this medical stuff, I still think we'd have boxes laying around.

So our prayer requests now are:

1) That Caleb's eating will improve dramatically very quickly and stay good and he can get off of TPN altogether.

2) That he will continue to be protected from infection and GVHD.

3) For our friends the Roehlers. Their son Lukas is 4 months old and had his transplant a couple of weeks ago. Today he ended up in ICU because of seizures, extreme difficulty breathing, and other issues. He's doing a little better, but still desperately needs your prayers. The Roehlers have already lost one little boy to complications following a BMT.

Thank you everyone! Love you!

Day +44

2011-09-16T20:25:00.000-07:00

Well, there have been a few bumps in the road since I last posted. Tuesday night, Caleb had a really hard time sleeping. He was very restless. But we got through the night and went in for his appointment on Wednesday. His counts were fine, except his Cyclosporine level was much too high, so they told us to hold his dose that night, then resume in the morning at a lower dosage. That day, his eating dropped off drastically. He took maybe 2 bottles all day. That night, he was really fussy again and kept me up a good part of the night.

By morning, he felt a bit warm, so I took his temperature and he was running a really low grade fever, ranging from 99.4 to 100.3 (F). He was obviously just not feeling really well, so I planned to call the clinic when they opened around 8:30. Around 8:00, I had Caleb sitting in his Bumbo while I did the dishes and I glanced over at him and noticed something pink dripping down the Bumbo. His TPN and lipids (fats) were still hooked up to him and the lipids, which are white, were dripping and blood was backed up into the line, thus causing the pink color. I quickly clamped the lipids off, went ahead and shut off the pumps as he only had a little left to go anyway. I thought that the cap had probably come loose, so I got everything together to flush the line and replace the cap. As soon as I pressed the saline to flush the line, it literally squirted out of the side of the line itself. Not the cap. The line. So I clamped the line off completely and called the inpatient unit. Of course, they told me to go ahead and bring him in.

We got there, they assessed the line and, as I expected, decided it needed to be replaced. Again. I may have forgotten to mention that while we were still in the hospital that Caleb's line had pulled out several centimeters and was replaced once. So, we went downstairs to get his third PICC line put in. I hate doing that because he's totally awake and I have to leave the room to maintain sterility. They give him a local, so supposedly he doesn't feel anything other than the shot, but still, he's only 6 months old and I know he wants his Mama and the whole process probably freaks him out a bit. ANYWAY. Fortunately, it doesn't take very long, maybe 15 minutes, so we got him back and headed back upstairs. Side note: Ayden obviously cares for his little brother. When we left the room, he kept saying, "Get Caleb? Need get Caleb. No leave Caleb." :)

When we got back to the clinic, they went ahead and gave him some antibiotics to prevent any infection from the line exposure and because of the low grade fever. One ran over 30 minutes, the other over 2 hours. So we'd gotten to the clinic at about 9:30 AM and left around 4:30 PM. Right in time for rush hour ... Not fun.

Last night, Caleb threw up everything that went in his tummy, from the 2 oz of formula I got him to drink to all his medicines (I had to re-dose the Cyclosporine), slept for 3 hours, then woke up obviously not feeling well again. The more we observed him, the more it seemed like he was in some kind of pain. We gave him a dose of Tylenol. He threw up a good part of it, but kept some down. After that, he settled down pretty quickly, took another couple of ounces of formula, held it down, fell back asleep, and slept through till morning. That seemed to prove our theory about him being in pain.

This morning, he still refused to eat and was fussy again. We went back in to the clinic for our regular appointment where they informed me that they'd be repeating the same antibiotics again just to be on the safe side since he was obviously feeling bad. That sucked since I hadn't planned for that, so I hadn't brought anything to entertain Ayden long term. Still, we survived somehow. Caleb's regular doctor wasn't there, so another doctor came in to assess everything. She said that Thursday his Cyclosporine level had still been high and that high Cyclosporine levels could cause some pretty severe headaches which could, in turn, cause nausea, fussiness, restlessness, etc. She said to hold his doses for today and tomorrow morning. We'll go in for just a couple of minutes in the morning to get a blood draw to check his levels, then they'll call with instructions as to how to proceed. I think they may have actually figured it out. He's held everything down since this morning, taken more bottles than he took the last two days combined and is sleeping soundly so far. If that's all it is, I'm overjoyed. I was really beginning to fear gut GVHD because of the nausea, reluctance to eat, and obvious pain. His counts had all been fine, so I knew it was unlikely, but I just couldn't think of much else.

So, it's been an eventful few days. I will be so glad not to go back to the clinic until Monday, and hopefully have a normal in-and-out appointment again then. Tomorrow we're going to Baytown to try to get our storage unit cleared out. Mom's going to come stay with the boys. Then Sunday will be family time/get work done around the house time. 56 more days to 100 days post!

Prayer requests are:

1) That Caleb have protection against any infections.

2) That his Cyclosporine levels will get back in the right range and he'll be able to return to a more normal routine.

3) That his eating will pick back up and continue to increase in volume. Really looking forward to having him off the TPN. Such a hassle!

4) For our friends the Finchs. Max is doing much better, out of ICU into a regular room, but still needs some healing.

5) For our BMT Buddy Lukas Roehler who's in Canada and just got his BMT a few days ago. He's only 2 or 3 months old, poor little guy!

Thanks everyone! Love you!

Day +38 - Doing Well!

2011-09-10T14:08:00.000-07:00

Sorry!!! I know it's been forever since I posted here. Things have just been so crazy! Things have been going really well!

Caleb engrafted somewhere around Day +22 or +23. He got a little help from a drug called GCSF to boost his counts because the ANC kept hovering in the 400 range when it needed to be above 500. It got there really quickly that way and stayed there! We were discharged from the hospital on Day +26, August 29th, and came home where we were reunited with Ayden. :) So glad to be back together as a whole family again.

Since then, we've been going to the clinic 3 days a week and trying to establish some sense of a routine at home on the off days. Fortunately, it seems like they've gotten a lot more time-efficient in the clinic since Ayden's days there and we're spending usually about 2 1/2 hours there instead of the 4 or 5 I remember from a couple of years ago. Caleb is still on TPN (IV nutrition), and his eating is picking up pretty slowly. It's gone from about 2 oz a feeding to about 3 oz or a little over. Hopefully it'll start picking up faster here soon. I hate having to put him into bed with all those lines everywhere. He's also on Cyclosporine (immune suppressant), Ganciclovir (anti-viral), Prednisolone (steroid), Lansoprozole (Prevacid - acid reducer), and Amlodipine (blood pressure). We've had to increase his Cyclosporine dose twice because his levels were too low, but we've already started weaning the Prednisolone and reduced the Ganciclovir, so that's a good thing. He's gotten one dose of IVIG which they give to everyone for a while post-transplant to protect against infection. He still has rhinovirus (common cold) and it is being incredibly persistent. Some days I think he's just made of snot and slobber. :)

I was a little concerned that Ayden wouldn't adjust well to having his little brother around again, but he's been awesome, wanting to show Caleb the ropes on his bouncer, playmat, swing, etc. He gives him hugs and kisses him on the head a bunch, and when he's crying, he runs to him and pats his head and says, "It's OK, Ca-yeb!" (still working on those Ls ;).

We're finally getting enough back into the swing of things that I've managed to cook at home a few times. I never thought I would get tired of eating out, but man, it happened. Home-cooked food has been such a welcome change.

Our biggest struggle lately is that SOMEBODY doesn't want to sleep in his crib anymore, and often won't stay asleep if we put him in it. He wants to sleep in Mama and Daddy's bed and prefers for one of us, usually Mama, to be present the whole time. I would SOOO go ahead and let him cry it out if it weren't for all the lines from his TPN that he's on at night. He loves to play with them, so it's a no go till he's off those.

So, our prayer requests for now are:

1) That his eating will pick up and he'll be able to get off the TPN soon.

2) That this nasty cold will go away and we can get out of isolation in the clinic! Ayden misses playing in the waiting room and poor Caleb is really sick of having his face wiped constantly.

3) That Caleb will return to normal sleep patterns soon as Mama and Daddy are often on the verge of collapse at some point each night.

4) For our friends Bee and Tim and their son Max. Max is 4 and had his BMT over a year ago, but has been dealing with skin GVHD ever since, and therefore still has a suppressed immune system. He was admitted to the ICU last week with an unknown infection and was retaining fluid all over his body and in his lungs. He was on a BiPAP machine to help him breathe, but had to be intubated when his difficulty breathing increased. They've gotten rid of most of the fluid on his body, but there's still some in his lungs and pleural cavities and he's still fighting off the infection. Pray for his total healing!

Thank you all so much! Love you!

First Feeding

2011-08-18T12:05:00.001-07:00

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Day +12

2011-08-15T20:24:00.000-07:00

We got some good news today! Caleb's white blood cells and neutraphils both went up a little bit since yesterday, so that indicates that he's *starting* to engraft. His neutraphils were at 50 this morning. When they're at or above 500 for 3 days, we'll know he's completely engrafted!

His clinic doctor came in and talked to us a little bit too. She said she's still concerned with his liver because of how many platelets he's going through. He's had a platelet transfusion every day for the last 4 days. She said it could be a really early sign of his liver acting up. If he needs platelets again tomorrow, she's going to get them to draw a lab one hour after the transfusion to see how much of a bump his platelet count gets from it. If it doesn't go up at all, that would indicate that he's developed an antibody to the platelets, in which case, he would have to get platelets that are perfectly matched to his type from now on for them to help. If his count does go up significantly, but is then back down again by morning, that would indicate some liver problems. In that case, they'll try to prevent any serious problems by giving him lots of lasix (diuretics) to keep him from retaining fluid and the problems should improve as he engrafts, so it shouldn't be a long term thing. I'm going to ask more about possible long term damage tomorrow, though, just to be sure.

His hematology doctor, Dr. Lakshmi, popped in for a minute today too. I always appreciate how much she and many of the other doctors here at TCH really care for their patients and follow their progress even when they've moved out of their immediate care. I'm so thankful we're here for so many reasons.

So, updated prayer requests:

1) That Caleb's engraftment continues and that only the donor's cells "set up shop" in his bones. There is a slim possibility that some of his own cells survived all the chemo and we don't want them to re-engraft in his body since then we'd have gone through all of this and he'd still have WAS. Once his neutraphil counts are at 100 - 200, they'll send off an engraftment study to make sure the cells are donor and repeat it periodically even after he's fully engrafted.

2) That if there's a problem with his liver, it will be well managed and controlled and that it won't cause any long term damage to him.

3) For my sister, as she's returned to our mom's house today and will be taking care of Ayden and her two girls by herself for a little while since Mom had to go back to work. Ayden and Ana together can get a little...hard to handle.

4) Again, for Ayden, that's he's safe and well while we're apart and that we all get to be together again very soon.

5) When that time comes, that Caleb will not get any infections or have any major problems post-transplant. I figure might as well start early on those prayers. :)

6) As always, for my brother and his kids. The wound of Kristen's death is still very raw for all of us, but I know especially for them. Our nurse's name today was Kristen and I couldn't help but feel a pang of sadness when she introduced herself.

Thank you everyone for the prayers and support! It's always greatly appreciated! Love y'all!

Day +11

2011-08-14T16:49:00.000-07:00

OK, since Steve Jobs thinks he's so awesome that he doesn't have to use JavaScript like the rest of the world, I can never post an update to the blog or even to my Facebook notes without Ty's computer which he has to take to work with him every day. So. Here's the update.

Things have been going ok. Caleb's been a little nauseous, but we got the doctors to approve him getting Zofran at least twice a day without having to throw up first and he's been keeping bottles down ever since. Other than that, he's just been kinda antsy and restless periodically throughout the days. They said the stem cells getting into position can cause some restlessness, so hopefully that's what we're seeing. His counts are right on target for where they should be, which means basically non-existent white blood cells or neutraphils, and continuously falling hemoglobin and platelets. All his electrolytes have been fine, so he's at least getting the nutrition he needs. He's continued to eat roughly 2 oz every 2 hours which is great. He's dropped off a bit today, but we're just glad he's still taking anything at all.

There was a little concern about his weight. It kept creeping higher and higher. Now, some of that could be true weight gain, but one of the risks of one of the chemos he got is that it can cause you to retain fluids, which, if left unchecked, can eventually make it hard to breathe, etc. They were also starting to get concerned about possible liver damage, but his liver has stayed soft and small, so it doesn't appear to be a problem.

The wonderful Ms. Connie came and watched him for a while on Friday. Mom had a training to go to, so Ty took Friday off to keep Ayden. Ms. Connie coming enabled me to go hang out with Ayden for a while. I hadn't seen him in over a week and I was having withdrawal pains! I can't wait till we all get to go home together and be a whole family again!

So, we should be seeing "signs of life," as the doctors called it within the next week. In other words, his counts should start to fluctuate a bit. When they've been rising consistently for 3 days, we'll know he's actually engrafted. Can't wait for that day! Ayden engrafted at day +17, and we were out of the hospital by day +22, so hopefully, we'll be doing something close to that again this time.

Thank you guys for the continuing prayers! Prayer list is still pretty much the same from last week. We definitely do want to start seeing those counts move around within the next week, so be praying for that as well. Also, money seems like it's getting tighter and tighter as long as we're here, so please pray for that too. Thanks everyone! Love y'all!

Day +4

2011-08-07T04:41:00.000-07:00

Well, everything's been going really well! With Ayden, I updated the blog daily or, at the very least, every other day. This time, it just hasn't seemed necessary as every day is pretty much like the last. Caleb still has the cold, so he coughs and sneezes pretty often, but other than the throaty cough, it doesn't seem to be causing him too much discomfort. He is still eating! Not nearly as much as before we came in, but eating, nonetheless. The doctors are amazed that he's still eating anything at all, and so are we. He drinks between 2 and 4 oz of formula about every 3 hours consistently throughout the day. The doctors did start him on TPN (IV nutrition) which runs for 12 hours overnight to supplement the calories he's not getting, but the fact that he's still eating is tremendous. He is a bit nauseous, throwing up 2 or 3 times a day, but it's usually pretty anticlimactic, unlike Ayden's episodes. We get him cleaned up, change the sheets, and go on about the day. His bottom looks wonderful! No skin breakdown from the chemo at all, and his stools haven't completely dissolved into constant diarrhea either. Ayden was having a heck of a time with his stools and diaper changes were a nightmare by this point. Caleb's up playing most of the day and sleeping most of the night! God is truly being faithful and saying yes to many of our prayers! Days +7 - +14 are usually the "low point," so we still have a ways to go, but so far things have been looking pretty good.

The last time I was in one of these rooms on this unit with Ayden, I was full of doubt and fear about God, scared that it was in His plan to take my son from me. This time, understanding at least a little more about God, I think, and about suffering in this world, I'm going through it leaning on Him. Much more anyway. Of course there are still moments of doubt and fear. Still moments when I just hold Caleb and beg God for his life, afraid it will be taken. But, I also have a hiding place, and that is truly a wonderful thing.

So, updated prayer requests:

1) His donor will probably be returning to regular daily activities about now or maybe yesterday. Pray that he/she will be comfortable despite the healing process.

2) That the ease of these days will continue! Specifically, that Caleb's bottom will continue not to breakdown, the nausea and diarrhea will be minimal and won't cause him much discomfort, and that his eating will continue.

3) That Ty and I, but especially Ty will be able to get enough rest. I have the benefit of taking naps with Caleb during the day, but Ty has to go to work most days, and he's dragging. Pray we'll have more energy than we should, given how much sleep we get at night, but also that we will get some more sleep on top of that.

4) For Ayden, that he stays safe, happy, and healthy while we're apart. I really miss that little guy. My mom caught Caleb's cold, so she has to stay away until she's completely healthy, so we can't see him until then. Pray he doesn't get the cold too, or sick in any way.

5) And again, for my brother and his kids. That'll be a long term thing, I'm afraid.

Thank you all so much! We love you!

Day +1

2011-08-04T05:22:00.000-07:00

Well, yesterday was Transplant Day! It went off without a hitch. I feel like many of my friends who haven't ever seen one still don't really understand what happens. Many people are imagining a big surgery in an OR, but it's actually much simpler than that. Right around 1:00 PM, our nurse for the day, Holly, came in with the bag of stem cells (bone marrow) that had been "harvested" from the donor early that morning, flown to TCH (we assume, I don't actually know where they were coming from), then processed. It looks like a bag of blood, only the color is a little off, a little too light. Caleb had been given Benedryl as a pre-med a little before and hooked up to heart, lungs, and...some other monitor by way of leads on his chest and belly, plus a pulse/oxygen meter on his toe. He was sleeping on me in the rocking chair. They hung the bag on his pole, and hooked it up to him. It doesn't run through a pump, so they control the speed through a clamp that can be adjusted and gravity brings it through the line. They checked his temperature and blood pressure several times throughout. His blood pressure did climb pretty high, but that's not unexpected with such a dense fluid going into his body. All in all, the whole thing lasted about an hour and we sat there holding him, talking and laughing at America's Funniest Home Videos the whole time. It's very deceptive in how anticlimactic it is.

Right now, and for the next 2 1/2 weeks or so, those stem cells will travel through his body, finding their way to his bones and, once they find them, they'll "set up shop" inside. That is referred to as engraftment. You can start to see engraftment anywhere from 14 to 22 days post-transplant, but the "magic" day is often day +18. Ayden's was actually day +17, Easter Sunday. :) At that point, Caleb's blood counts will start climbing. They determine the date of engraftment when the counts have been steadily rising for 3 days.

Until then, we just have to deal with the side effects of the chemotherapy he was given. I've been reading over my blog posts from this time with Ayden, and I'm sooooo hoping Caleb does better, even though Ayden, by all accounts, was doing really well. There was a lot of vomiting, diarrhea, and generally not feeling good at all for Ayden. I'm not really looking forward to all that. On the plus side, Ayden's little bottom had already started breaking down by this point because of the chemo in his waste, but Caleb's looks great, even better than when we first came in. I bought a ton of Desitin before we came in and I've been covering his bottom in it since day -10. So far so good.

So, specific prayer requests for right now:

1) That Caleb's donor will be blessed, that he/she will heal quickly from the donation process, and that we'll be able to meet him/her in a year or so.

2) That Caleb's next 2 1/2 weeks will be as comfortable for him as possible as the chemo goes crazy in his little body.

3) Caleb tested positive for rhinovirus (the common cold) the other day, so we're in isolation now. Ayden also had it when we were in for his BMT. It's not serious, and they don't treat for it, but he's coughing like crazy and sneezing with a runny nose. The coughing really bothers him and makes it hard for him to sleep at night, so pray that it will subside quickly.

4) That Caleb's eating will hold up in some form. He's been doing really well so far, taking about 4 oz every 3 hours or so during the day. We'd love if he'd just continue to take something, anything, to keep him in practice.

5) That Ty and I will hold together for these next few weeks. The lack of sleep is really getting to Ty, but he refuses to go home and get a good night's rest. Of course, I want him to, but I don't, as nights are particularly hard for me, being a through and through morning person. I tend to lose all compassion in the middle of the night, at least until I wake up enough to remember it. I need to work on that, but it would be awesome if Caleb would sleep a little better at night too. He's been sleeping on my chest on our bed for several days now, not in his crib where he belongs so Mommy and Daddy could get some decent sleep. So tired. Lol

6) That the transplant will work and that Caleb won't get any infections in the next year that could cause complications. At this point, with absolutely no immune system, the flu could easily kill him, along with any number of other infections. We want him in a bubble from Heaven basically, keeping him healthy during this time.

7) For Ayden, that he treats his grandmother well and doesn't forget us, and that he's protected as well while we're apart.

8) And of course, continued prayers for my brother and his kids as they continue to deal with the ramifications of Kristen being gone. The church has been amazing and has done a ton of work on their house already, and several other concerns have been taken care of in answers to prayer, but it's still very difficult for everyone.

Thank you so much everyone! Your support on Facebook and in texts and other ways has been amazing! We're so blessed to have such an amazing support system in place for times like this. Love y'all!

Day -5

2011-07-29T17:27:00.000-07:00

Yesterday was a pretty good day. We got a visit from the His Grace Foundation who have adopted the BMT Unit. They provide all kinds of services to the patients, including free parking, a shopping list every week, rides to and from stores and malls, occasional group dinners and brunches, dinner on the day of the transplant, and a bunch of gifts on the first week. The lady who came in our room was here 2 years ago when we were here with Ayden too. She looked at us and said, "Am I having deja vu?" :) They're a really amazing organization. I've been thinking that once we're through all of this and a little more financially secure, I'd like to spend some of my time volunteering with them.

There's also a masseuse who donates a full day once a week to giving 15 minute massages to parents in the unit and to nurses and PCAs if there's time. He was here yesterday and it was AWESOME! I really needed that massage. Caleb was nice enough to sleep the whole time, so I really got to enjoy it. We also got a visit from David and Kim Ellis from Lakewood church of Christ in Baytown, where we were going before we moved. It's always so nice to see familiar faces around here, so we really appreciated their visit.

Unfortunately, I think today undid all the good work the masseuse did yesterday. It was Caleb's first dose of Campath, a drug that is not chemo, but is used to destroy the white blood cells and lymphocytes, basically the whole immune system. The initially started to run the infusion over 4 hours, but slowed it down to 5 hours 2 hours in when Caleb's heart rate started to climb. Even with the reduced pace, his heart rate stayed up near 200 for the remainder of the time and probably an hour or so after it was done. His temperature also got up to 101.6. He was completely miserable.

I literally held him for about 6 or 7 straight hours while he went in and out of fitful sleep, crying and moaning when he was awake.

We gave him some Tylenol for the fever and some Ativan to try to help him relax. It did help, but he still felt bad. A little while after the Campath was done, we started noticing a rash on his back and face and head. Campath can also cause people to break out in hives and Caleb was positively covered in those places (see picture). We got him some Benedryl for that, and they're almost gone now. Thankfully, when I told Ty about the heart rate and temperature, he left work early and came to help us. Even though Caleb really wants to be held by me and there's not a whole lot Ty can do in those situations usually, it helps me so much for him just to be here with me. I don't feel so alone.

Anyway, that's where we are right now. Hopefully the next two doses of Campath won't be as traumatic, as many of the white cells and lymphocytes have been killed off with the first dose. Hopefully Caleb will humor us and sleep in his own crib tonight so Daddy and I aren't falling off the bed while he sleeps comfortably in the middle. :) Thank you everyone for your continued prayers and support! I could really feel them today! Love y'all!

Days -8 and -7

2011-07-28T02:20:00.000-07:00

It's about 4:20 in the morning on day -6, but I can't sleep so I figured I'd update the blog. Things are going ok at the moment. Day -8 was pretty uneventful for Caleb and me. Ty had to go to work all day, including the history class he teaches at Lee College back in Baytown from 6 - 10 PM, so we were alone for a long time. Thankfully, nothing bad happened, so we managed pretty well. We did get a pleasant surprise visit from Bill and Jane Hanna, so that was wonderful! Always nice to see familiar faces, especially on those long days that Ty is gone.

Day -7 was, regrettably, a bit more eventful. Everything was going fine until the early afternoon. Mom brought Ayden up to the hospital and we took him to lunch while she sat with Caleb. Caleb had been a little wishy washy on eating that morning, but was still doing ok. We took Ayden over to Chipotle because he loves the "tortillas" (quesadillas) there, then over to see the cool train set up the hospital has, then to get ice cream at the McDonald's inside the hospital. We had a good time and it was great to see him. A little time away from him has really made me appreciate how much fun he is to be around. A pain sometimes too, but then, he is 3.

When we got back, Caleb was sleeping on Mom and had finished a whole 6 oz bottle. I took him and let him sleep on me for a long time. Eventually, I shifted so I could lay down with him on my chest and we all took a nap together. After an hour or so like that, Caleb started rousing a bit and I could tell something was wrong. I tried to sit up in time, but I was too late and he vomited all down my shirt. He pretty much emptied his tummy, then we got him (and me) cleaned up, our sheets changed, etc. He took a long nap, then had another bottle when he woke up. About an hour later, threw that one up too. We got him cleaned up again and I just held him for a long time and he started to fall back asleep.

Suddenly, in the middle of drifting off, he arched his little back, lifted his head, and started looking around, pretty distressed. I sat him up and then we noticed that he'd started shaking. I was terrified it was the start of a seizure since the chemo he's been on the past few days can cause seizures, but his eyes never lost focus, so it wasn't that. But he was shivering like he was freezing. The nurses took his temperature, and it was fine. I wrapped him up in a couple of blankets and held him tight, but the shaking just kept coming in waves. I jumped on my phone and updated my Facebook status, asking for prayers that it would get resolved quickly. The nurse called the doctor on call and he said to give him a dose of Ativan, but we were very concerned about no one actually coming to look at him. Ty made a bit of a fuss about it (not too bad, but firm) and suddenly doctors were descending on our room en masse. A doctor from the PICU took control and ordered blood tests to check glucose levels, electrolyte levels, Dilantin (anti-seizure med) levels, and a few other things. They ran multiple blood pressures, put a pulse/oxygen meter on him, and took his temperature repeatedly. All the stats looked fine and all the blood tests were perfectly normal, right where they should be. Meanwhile, he'd been given the Ativan and the shaking started to slow as it made him drowsy. Ativan is an anti-seizure med, but it also usually has a sedative effect as well (with Ayden, it made him super excitable. Go figure.). The BMT fellow on call did arrive in time to see some of the shaking, but it had completely subsided by the time he left.

So, the most educated guess we've got is that it was a reaction either to the Busulfan (chemo) or to the Dilantin, which he didn't tolerate great on the first day. He's got another few doses of both today, so please be praying that this doesn't happen again.

After all of that, neither Ty nor I was willing for Caleb to sleep in his crib, so we laid him on our bed and laid around him. Not the most comfortable arrangement, but we were worried that we might miss something if he was away from us on the crib.

It's strange how my body is responding to scary and strange situations now. There used to be a much more immediate response. I would start crying quickly or at least feeling some strong emotion. Now, my body basically won't let me process emotion until much later. Last night when this happened, I felt exactly the same as I did when Kristen passed away. Completely numb. Obviously, my brain knew enough to worry and to act quickly and get prayers and doctors, but my body absolutely refused to let any emotion through. I guess it knew, just like with Kristen, that if I felt the emotion right at that moment, I'd completely fall apart, so it kept me from dealing with it so I could deal with the situation. It's a very odd feeling. I think I'd rather process the emotion. Because it always comes back to bite me at some point. I'm sure in a month or two, all the stress of episodes like these and everything that's to come will catch up to me. I'm not sure what will happen at that point.

Thank you to everyone who saw my Facebook post and prayed for Caleb. The issue was resolved quickly, so it definitely worked! Please keep him in your prayers today as he gets his last doses of Busulfan and we add another type of chemo, ara-c, to the mix. Ara-c is one of the ones that usually starts causing lots of vomiting, appetite loss, and bad diarrhea, so we'll definitely need your prayers as we start this phase of his treatment. We've had it pretty easy so far. Thank you all, and we love you!

Day -9!

2011-07-25T04:15:00.000-07:00

We have been so insanely busy it hasn't even been funny. I'll try to go in chronological order. First, the second week of July, the week after Ayden's donor headed back home, we spent the week wrapped up in doctor's visits and continuing to try to get settled in the new place. Monday of that week, Caleb had a minor surgery to place his PICC line. It had been rescheduled for the following Friday, but after a day in the clinic when it took 5 tries to place an IV, the nurse practitioner moved it up. On Tuesday, his hematologist discovered a small ear infection and started him on antibiotics. Our admission date was moved back a week to the 24th so he wouldn't be admitted with an active infection.

Saturday, the boys and I headed to Baytown to have lunch with some of my friends, since there won't be much opportunity for that in the coming months. Mom offered to watch Ayden, so I dropped him off in the morning and headed out to town. No sooner had I gotten to Kohl's than Mom called and said my brother Paul had called her and said one of his seven kids had found his wife Kristen unresponsive on their bed, so she was heading over to his house (basically right next door), so I needed to get Ayden. I rushed back to help any way I could. When I got there, they were just getting Kristen on a stretcher to take her out to the ambulance. She was talking, though not really to anyone, so I thought, OK, good, she's ok. I went to get some formula for their 5 month old since she had been exclusively breastfed. When I got back, Paul had gotten home from work, dropped off his 11 year old who'd been with him, and headed to the hospital, and Kristen's parents had arrived. She'd been taking care of her older sister that day who has cerebral palsy.

A few minutes later, Kristen's dad got a phone call. It was Paul, letting him know that Kristen was gone. Her heart had stopped beating in the ambulance and they worked on her till they got to the hospital and for 15 minutes afterwards, but there was no response. At 41 years old, leaving a husband, 7 children, 2 parents, 2 sisters, 2 sisters-in-law, and MANY other friends and family behind, Kristen passed away with no warning whatsoever. We don't have the final autopsy report yet, but they believe she must have had an undiagnosed aneurysm. I never thought I'd thank God one of my kids had an ear infection, but I cannot imagine if we'd had to go into the hospital last Sunday, the day after her death, unable to help at all or attend the visitation and funeral, etc. The rest of the weekend and the following week were filled with helping my brother's family any way we could. The church family at Lakewood church of Christ was absolutely AMAZING. They covered the entire funeral, they provided tons of food and supplies, they set up a mealtrain.com account for Paul and the kids to make sure food continues to come in the coming weeks. They have organized volunteers to help make the house what Kristen had wanted it to be. She had several projects pending that she was passionate about, such as changing the front parlor into a room for the boys (3 girls, 4 boys among the kids). Lakewood CoC is committed to making that happen for them. The visitation was Tuesday evening and the funeral Wednesday morning. Both were absolutely packed. If there was ever anyone you don't wonder about whether they got into Heaven or not, it was Kristen. She loved Jesus with all of her heart and was prepared in every single conversation to tell you about it. I know there was no response as the medical team worked on her because as soon as she caught a glimpse of her Savior, she couldn't help but run to Him and fall into His arms. :)

I could go on for a long long time about all of that, but I'll cut it short so the post doesn't take forever. After the funeral Wednesday, we headed back home. We had to keep the boys away from all the other kids as much as possible to prevent any sort of infection this close to transplant time, so there wasn't much point in staying. We couldn't go over to my brother's house. Thursday was spent running errands and getting last minute stuff for the hospital stay. Friday was another BMT appointment where we got the go-ahead to come in on Sunday, then we had an early dinner as a family since our time as a complete family unit was getting pretty short.

Saturday we went back into Baytown, with Ayden all packed up to stay with my mom for the next month. I got my last pedicure for a while :) and we had lunch with our friend Sheree and her little girl. Then we took the boys to the Kemah boardwalk for a little while for our last bit of family time. Ayden enjoyed the ice cream, aquarium, and seeing the boats. Then we took him back to Mom's and dropped him off. He loooooooooooovvvvveeesss staying with my mom, so there was no drama there.

Yesterday morning we had breakfast at Cracker Barrel just like before Ayden's transplant, finished packing up and headed to the hospital. We got in a room very quickly and a BUNCH of people stopped by to see if we needed anything (social worker, guest services lady, physical therapist, nutritionist, etc). We got the schedule of his chemo and when the transplant will be (see left). The doctor came in and looked Caleb over and gave us the final go-ahead for the transplant, so we got all settled in. He got his first dose of Dilantin, an anti-seizure med, last night. It didn't seem to sit well with him. He became pretty agitated and had a hard time falling asleep, then staying asleep later. He ended up between us on our little slightly-bigger-than-twin-sized bed in the wee hours of the morning, as he always sleeps better in bed with us. This morning, they will start his chemo and there will be absolutely no turning back.

So, specific prayer requests we've got right now:

1) for Paul and the kids, and also for Kristen's parents. I don't know the pain of losing a spouse, mother, or child, and hope I never will, at least not till my mom is in her, you know, 130s or so and Ty has promised me 500 years. :) Kidding aside, though, this is extremely difficult for all of us, but I think especially for those people.

2) for Caleb as he undergoes the crazy high doses of chemo required to kill off bone marrow. Pray for minimal discomfort for him, specifically minimal nausea and diarrhea, and especially that his little bottom won't break down as the chemo irritates the skin. I bought my weight in Desitin before we came, so hopefully that will help prevent the sores that can come with chemo-ridden diarrhea.

3) for Caleb's donor, that God will protect him/her and make sure that everything goes well with collecting the marrow.

4) that everything will go perfectly in getting that marrow to us on the day of the transplant.

5) and of course, that Caleb will recover from the transplant successfully and just as smoothly as Ayden did.

6) Also, this is kind of a weird one, but it's normal for people on this much chemo to lose their appetites, so I'm not too worried about that, but once Ayden's came back, he had decided not to take a bottle or formula ever again. It took us months to get him enough calories and fluids to get him off of IV nutrition. So, please pray that when Caleb's appetite comes back, he'll go back to taking his formula from a bottle like he does now so that isn't an issue.

7) For Ayden, that he'll be kept safe and healthy while he's away from us. As much as he annoys me every day, he also brings a lot of joy and laughter and I already miss him.

8) for Ty and me, that we can take each moment as it comes, not get too horribly stressed out, and be the best parents we can be for our boys during this time.

Thank you all soooo much for your prayers and support. I've been just overwhelmed by the amount of love we've received through everything with Kristen and now with Caleb. You guys are truly amazing and we love you!

TONS of New Info

2011-07-08T20:21:00.000-07:00

Well, I've been without internet and/or a computer for a while now, so I haven't been able to post everything that's been going on. We finally got internet in our new house today, so here goes!

First off, we have a transplant date! We will be admitted on July 17th and the transplant will be July 27th. Yep, that's just 8 days away. Ugh. Originally, our admission date was the 10th, but it got moved due to donor availability. I can't say I was all that disappointed as it's been a really crazy time for us the last few weeks. The last week of June, we got moved out of our old place and into the new one here on the west side of Houston. The location is amazing, and I'm glad we decided to do it. Caleb has completed all of his pre-transplant organ tests and passed with flying colors. They included a GFR (kidney function), an EKG and sedated echocardiogram (heart), a chest x-ray, and an infant pulmonary function test (lungs). He is NOT a fan of oral sedation meds, just fyi.

Then last Sunday, Ayden's donor Misty flew in from Seattle with her 3 year old grandson Joey, and stayed till Thursday morning. So as soon as we moved away from Baytown, we had to drive back and forth for several days since they stayed with my mom. It was so worth it, though. I feel so fortunate that we were able to meet her and spend a few days getting to know her. It's humbling to think of how many people were involved in saving Ayden's life and it was amazing to me to see Misty and Ayden standing in the same room on his 3rd birthday, knowing that his 3rd birthday wouldn't have been possible at all without her willingness to help a total stranger many states away.

Thursday was a huge dose of "back to reality." I took Ayden and Caleb for Caleb's appointment with Immunology, then we followed that up in the BMT unit with a platelet transfusion and infusion of Pentamidine (pneumonia preventative) for Caleb. The immunology appointment went fine. When we got to BMT, one (good, experienced) nurse tried to place an IV with 2 unsuccessful attempts. Then they brought in a nurse with a portable Doppler device so they could see the vein easily. 2 more unsuccessful attempts. Then we headed down to the radiology lab where they used a bigger Doppler device and finally were able to place the IV. By the end of it, Caleb had all but lost his trust in everyone. Even several hours later at home, he started crying when I would so much as try to put his arms in a sleeve. Crying really isn't the right word; weeping is more accurate. He didn't smile the rest of the day. I felt awful. It was one of the first times in a long time I've cried in front of medical professionals. Heck, the medical professionals looked like THEY might cry. Thankfully, Ty came and picked Ayden up so I didn't have to deal with him while I was trying to focus on Caleb, and we got through the infusion and transfusion with Caleb sleeping on my chest.

Due to all the heart-wrenching drama of trying to get that IV placed, Caleb's nurse practioner in the BMT clinic got the surgery for his PICC line placement moved up to Monday instead of Friday since he's got a few more blood draws required before his admission. So he'll get one IV Monday for a platelet check (to make sure they're above 50K for the surgery) and the sedation, then after that, they'll just have to access his PICC line which is, mercifully, totally painless.

Today Ty's mom and brothers came down and met Caleb for the first time. I'm glad they got to do that, and I hope his dad gets to soon. We haven't seen him in over 2 years now. Time and finances always get in the way of getting up there to see them. Caleb got hungry at one point and let us know it, as you can see from the picture. :)

So between now and then, we'll be trying to get the house unpacked and set up, cook some meals for our hospital stay, and get all the loose ends tied up before we go. We're ready and we're not. We're happy and we're not. We're scared and we're not. It's quite a mix of emotions.

This second baby has been so much easier for me in so many ways, not the least of which is that, having been through it before, I know the hard times will pass. I can see the other side of the BMT, whereas I couldn't last time. I just wish I had a guarantee that everything will go just as well this time as it did with Ayden. But that guarantee cannot be made, so we still have to take just one day at a time and treasure each moment we're given. Until going through this with Ayden, I never really appreciated how truly precious each moment is and how quickly they could be taken away. Now I know, and living in that knowledge is not a particularly comfortable place to be. But I'm thankful all the same.

Thank you for your prayers and support. Please keep them up! Love you all!

Paige - Father's Day

2011-06-11T13:45:00.001-07:00

Click here to view these pictures larger

And the hits just keep on coming... :)

2011-06-03T19:33:00.000-07:00

So, Sunday of this week, we're all getting ready for church, on time for a change, when I pick Caleb up and think his head feels a little warm. We take his temperature and it's 100.6, which counts as fever for a baby his age. So we call the hematologist on call and he says to go ahead and bring him into the ER to get checked out. Several hours later, after blood draws, a urine catheter, a chest x-ray, and a platelet transfusion, Caleb was admitted to the hospital with pneumonia. He received several rounds of IV antibiotics and we were released on Tuesday with oral antibiotics to finish up. Good gravy.

Then Wednesday, we went in for his regularly scheduled appointment with hematology. We had been planning to give him a trial run of IVIG that day in hopes of boosting or stabilizing his platelet counts. His platelets were at 68K after the transfusion on Sunday, so we did a 2 hour infusion of IVIG and planned to return Friday (today) to see how his counts responded. Unfortunately, his platelet count today was 24K, indicating that he had no response at all to the IVIG where his platelets are concerned.

All of this together is beginning to convince us and the doctors that we may not be able to wait until he's 6 months old before going ahead with the bone marrow transplant. Every transfusion he gets increases his risks of being exposed to something that could cause problems after the transplant when his immune system will be nil, and also increases his chances of creating a platelet antibody that could render the transfusions useless.

On the good news side of things, I did contact Caleb's BMT doctor to see what the status of the donor search is. She indicated that we have more than one 10/10 (perfect) match and said they're choosing between them now. While a 10/10 match in no way guarantees a perfect outcome, it greatly reduces the risk of Graph vs. Host Disease (rejection) after the transplant. GVHD is one of the most common, and dangerous, possible side effects of a BMT, so any chance we have to avoid it is a huge blessing. Also, there are some advantages to an earlier BMT. The BMT team here at Texas Children's is quite experienced with transplanting young babies and is pretty confident about what they do. If we did the transplant in the summer, my mom will be off from school and can help a whole lot with Ayden. Ty and I were already trying to figure out how in the world we were going to get Ayden taken care of in September. Summer would make that problem pretty much a moot point. I feel like this is the first good news we've gotten about Caleb's medical stuff since the day he was born.

With all of this going on, we've also come to a pretty big decision. At the end of this month, we will be moving to the west side of Houston (roughly an hour from where we are now). The location we've found is 10 minutes from Ty's work and about 20 minutes from the hospital. That is significant because it means we won't have to find somewhere closer to stay for a while when Caleb is discharged. Some of you may remember that after Ayden's discharge, we had to stay in Pearland so that we'd be closer to the hospital than we would have been at home. It was an extra month of not being home after being in the hospital for a month. We were very blessed to "chance" into a donated place, free of charge. Otherwise, we'd have had to pay something, even if it wasn't a ton. Even Ronald McDonald House charges a minimal fee. Anyway, with this move, that won't be a necessity. We did the math and discovered that between Ty's commuting and our frequent trips to the hospital, we're spending nearly $700 a month on gas alone. We also have to eat out often because of the distance from the hospital and Ty is spending 2 hours of his very tightly packed, busy days on the road instead of working or with his family. It's honestly gotten to the point where it's just too expensive for us to live in Baytown. Plus, with all of Caleb's problems, only good can come of being closer to the hospital. The location we're moving to is right next to a wonderful park where I know Ayden will have a blast, and it's only a few blocks from the store where my brother works, which is a plus (believe it or not ;).

The townhouse is bigger than where we're living now, and the boys will be able to have their own rooms (which Ayden will greatly appreciate when we start sleep training Caleb).

Of course, the downside to a move is all the wonderful people we'll have to leave behind. It's very convenient and nice to live so close to all my family as we do right now. And also, we hate to leave behind our amazing church family who have been so wonderful and supportive through all of our struggles with Caleb's health. We can't put into words how much we love and appreciate all of those wonderful people. I sincerely hope we'll be able to maintain the relationships we've made with them and we plan to visit as often as possible.

So now we're packing things up, getting ready for a big yard sale, and everything else moving entails. While it's hard, we know this is right and necessary for our family.

I have so many people tell me how strong I am as I deal with everything that's going on in our lives. In trying to encourage us, people tell us that everything happens for a reason, and God won't give us more than we can bear. I have to disagree. It occurred to me today that I'm positive God gives us, or allows us to deal with, more than we can handle. Were we only dealt loads we can shoulder, where would be our need for God? Since Caleb's birth, with every emergency that's hit us, from Caleb's medical stuff to my emergency gallbladder surgery, to Ty's hernia, to the cars trying to break down under us, I've been wondering where God is and why He's allowing all of this to happen. I know life isn't supposed to be perfect, but geez! You would think you'd at least get a little break. I've told some people that we couldn't write a book about our lives for the past few months because people would think it unrealistic for so many bad things to happen to one family in such a short period of time. I've also heard some of my fellow Christians make statements about how nothing bad is going to happen to their family because God wouldn't allow it. Well, what about all those children I see all the time at the TCH Cancer Center? Does God hate them or their families? Are they just not praying hard enough? The reality is, Christian or not, no one is exempt from life's difficulties. It's ridiculous to say that just because I'm a Christian, nothing bad will ever happen to me or my family. Maybe these things do happen for a reason, maybe it's just a consequence of living in this world. Either way, God never promises to keep us from harm, but does promise to be there in the hard times. It occurs to me that all this time, I haven't been strong enough to deal with everything that's happening. I've been wondering where God is, only to find that He's been holding me up all along. Maybe there is someone in the world who could handle all of this without help, but it's not me. Despite my doubt, anger, fear, and any number of other mistrusting characteristics, God has been there and will continue to be there as we fight this fight. And we will continue to pray that He will see us through to the other side, giving us a healthy, happy little boy when we get there, just as unscathed by his BMT as his older brother is. I honestly don't know if I could handle losing him, so I do hope God takes that into consideration as He works with us through this.

We love you all. To our friends in Baytown, we will greatly miss all of you and will try to visit as often as we can. Thank you so much to everyone reading this for your thoughts and prayers. We love you!

Awful Beautiful Life

2011-05-27T19:36:00.000-07:00

Well, it's pretty much been total chaos around here since I last updated. I'll try to compartmentalize...

1) Caleb

He's doing pretty well other than the fact that his platelets just aren't stabilizing anywhere. As long as they give him a somewhat larger dose of platelets than they give the typical patient (15 mls/kilo instead of 10 mls/kilo), he can hold out for about 2 weeks, but that's it. We haven't had to make as many ER visits as we did with Ayden, but I think a lot of that has to do with just knowing what we're dealing with and what to look for, and not because he's really doing any better than Ayden was at this point. Caleb will be 3 months old in 9 days, and he's already had 6 or 7 transfusions. This week coming up, we're going to be doing a trial of IVIG along with platelets if he needs them to see if that will help bolster his counts and keep them higher longer in order to avoid so many transfusions. The danger with the transfusions is that, number 1, the more he gets, the more likelihood that he'll be exposed to something that could cause problems post-BMT, and number 2, that he could create an antibody to the platelets which would deplete their effectiveness. It's very possible that the latter has already happened to some degree, which is where the IVIG comes in.

His eczema, another of his WAS symptoms, had been causing him considerable discomfort, so we finally got in to see dermatology at Texas Children's. They gave us several ointments that are stronger and safer fora baby than steroid creams (hydrocortizone), and since we've been using them, he's felt muuuuuuch better.

Other than all the medical mumbo jumbo, Caleb is an absolute joy. He's adorable, he smiles and giggles at us, sleeps well, loves being in Mommy's arms. :-D

2) Ayden

Ayden's doing well in most respects. He's adjusted to having a baby brother beautifully without all the jealous drama I've heard of in some toddlers. However, it appears that he's possibly a little behind with his speech, so he's been referred to be evaluated for speech therapy. We're finishing up a couple things before we get rolling on this, but soon we'll take him to TCH for his evaluation and see what we need to do from there.

We've also started working on getting rid of his pacifier, and have met with pretty hearty resistance. :) He's finally accepting it a little better because he knows he can have it at nap time and bed time. Some days, he'll come up to me at 9 AM, though, and say, "Night night time. Paci?" Diabolical little boy. He refuses completely to potty train, no matter what we try. To be honest, we haven't exactly been fixated on it with everything else going on, but regardless, he shows no interest whatsoever. I'm hoping there will come a time when we can stay home a little more often and really start working on it.

3) The parents

I very unexpectedly ended up in the hospital the weekend before last having emergency gallbladder surgery. Fortunately, they were able to do it laparoscopically, so I was out of the hospital the day after the surgery. Can I just say, I'm really not a fan of abdominal surgery? Having had 2 within a less than 3 month time frame, I can definitively tell you that I do not enjoy them in the least. And I really do not like prescription pain meds. The morphine while you're in the hospital is cool, but Norco and Hydrocodone do not float my boat. Both of these surgeries, I've just gotten by with Ibuprofen once I got home.

Ty is preparing for surgery since we found out around the same time as my gallbladder stuff that he's developed a hernia. Because we really need one more thing on our plates. A friend of ours said once that the universe doesn't pick on YOU, it picks on everyone, but I gotta say that sometimes I feel a little closer to the bulls-eye than most people. And yet, there are so many who are even worse off than we are, so we're also thankful that things are not worse and pray that they don't get any worse either.

So that's where we're at right now. Please pray that Caleb's IVIG treatment will make a difference in his platelet counts in a positive way. Also, please please pray that all the surprise emergencies stop coming up. It would be really awesome if we could just focus on Caleb and not worry about ourselves, the cars, and all the other pulls on our attention and finances that keep coming up. As Mother Teresa once said (paraphrasing), I know that God won't give me more than I can bear, but sometimes I wish He didn't think I was so strong.

Thank you all so much! Love you!

Transfusions, Potential Matches, and Easter

2011-04-29T06:58:00.000-07:00

Well, we're still just trudging along, trying to keep both our kiddos healthy and happy. Caleb's platelets stabilized right around 20K for a good 3 weeks, but then dropped to 14K this past Tuesday, so he received his 4th platelet transfusion. We drew labs again an hour later and they'd gone up to 163K, so that at least tells us that he had a good response to the transfusion. He's had an upper respiratory infection and an ear infection in the past month, so there appears to be at least some immune deficiency despite his T- and B-cell lymphocytes being good. His hemoglobin has been a little low, so his hematologist is going to test for microbleeding in his stools, meaning I get the lovely task of taking 3 stool samples from his diapers and returning them to the doc. :-\

They did let us know that the results of the HLA typing are back and they've already found "several" potential matches for him. I don't know yet how many "several" is, and I'm

very curious about it, but I assume we'll be hearing from BMT soon, so I guess we can wait. We do know that he and Ayden do not have the same HLA type, meaning that Ayden's donor won't be able to donate again for Caleb. Hopefully we can find a perfect match for Caleb that will work just as beautifully as Ayden's donor's did for him. The last time we talked to BMT at Ayden's 2 year post check up, we talked a little about Caleb informally and the doctor told us that since Ayden's transplant, they have done more cord blood transplants with better results than they'd had in the past, so that is more of an option now. She still prefers a live donor, but at least if a cord is our best match, TCH is better prepared for it now.

We go back in to the hematologist next Tuesday, so we may talk more about IVIG or other methods to try to stabilize Caleb's platelets a little more without constant transfusions. Basically at this point, it looks like his case of WAS is every bit as severe as Ayden's was, if not worse. We're just trying to keep him healthy enough to wait till he's 6 months old for his BMT, preferably with as few transfusions as possible in between.

I keep it well at bay most of the time, but every once in a while, my defense slips and I realize how absolutely terrified I am of going through this process again, especially with an almost 3 year old prone to picking up viruses from other kids. We don't know exactly how we're going to do the whole transplant thing as someone's got to stay home with Ayden during the day every day for at least a month while I'm at the hospital with Caleb and Ty's at work. Aside from the logistical nightmare of that arrangement, we hate the idea that for a month, Ayden is barely going to see either of his parents. Then afterwards, when Caleb is still immune suppressed, we've decided we're pretty much just going to have to keep Ayden away from kids, period, at least for the first 100 days post or until Caleb is off all the steroids and immune suppressants. We just can't risk Caleb getting sick. It's too terrifying a prospect. I'm scared. And I know Ty is too. It's one thing to know in your head that you and/or your kids are not guaranteed tomorrow, that an accident or something else could take them away from you at a moment's notice any day. But it's something else entirely to be directly faced with the possibility of their death every day. You don't dwell on it, you try to stay positive, you have faith that God can bring them through, but it's still there staring you in the face every time you have even so much as a moment of doubt.

Sorry for the morbidity. Again, it's usually kept at bay, but it's not something I can completely set aside. In other news, we had a good Easter. Ayden got to meet a live show bunny, do 2 egg hunts, and wear spiffy new duds, courtesy of Grandmother. :) We FINALLY got a picture of all 4 of us together, so that was good. Easter will always be an extra special holiday for me. It marks Christ's resurrection, which is the greatest gift the world's ever been given, but it also marks the day Ayden's new bone marrow engrafted over 2 years ago. Somehow I knew he would engraft on Easter Sunday. It was like a sign from God that He was watching out for him and that everything would be ok. He engrafted on Easter, then his 100 days post transplant date, the day social isolation lifted, was July 4, Independence Day. Coincidence? I think not. ;)

Thank you all so much for your love and support. We are shamelessly soliciting your prayers for Caleb and ourselves as we go through the next year and a half or so (hopefully only that long!). We know God is capable of bringing Caleb through this treatment just as miraculously as He did with Ayden, so we pray, and ask you to pray also, that He'll do so.

Love to you all!

Caleb So Far

2011-04-08T13:06:00.000-07:00

Well, been a little while since I updated. Usually when I have time to blog, I opt for sleep instead. :) Things have been going OK. We were pretty concerned there for a bit because after the first transfusion in the ER which only sent Caleb's platelets up from 25K to 32K, they dropped all the way down to 15K a week later. He got another transfusion, obviously, at that point, bringing the total up to 3 in less than a month, basically one a week. We did not like that trend since, as my fellow WAS parents know, the more transfusions you receive, the more chance there is of being exposed to infections that could cause problems after a BMT, and the more chance you have of developing an antibody to the platelets, rendering the transfusions completely ineffective. We want as few transfusions as possible leading up to BMT time.

This week, however, things started looking more up, at least for the moment. We went in on Tuesday and his platelets were at 38K, meaning we did not need a transfusion. Also, we had some results from some of his blood work, and his T and B cell lymphocytes look good, indicating at least decent immune function. They're going to draw for immunoglobulins next time, which are another indicator of immune function. We discussed a few things with his hematologist and came to the agreement that we would not transfuse above 20K anymore as opposed to 30K. A huge difference this time around is that we have an amazing support group of fellow WAS patients and parents of patients and our shared experiences are an incredible help in making decisions. Obviously, every WAS patient is different, but from what I can tell, most patients' platelets stabilize, if they're going to stabilize, in the 20K - 30K range. If we continued to transfuse below 30K, we might be wiping out the chance for Caleb's platelets to stabilize. His hematologist agreed with me, saying that usually for little babies, they're more aggressive, but as we know the signs and symptoms so well and are definitely not known for taking risks, she was comfortable with that arrangement. We also discussed the possibility of using IVIG in an attempt to protect his platelets from being destroyed so quickly. IVIG is a blood product that, as I understand it, coats the platelets, helping them withstand attack, and therefore hopefully boosting or at least stabilizing falling platelet counts. For the time being, we're going to track how his platelets do without it, but it is definitely a treatment option in the future.

We discussed a little about Ayden's socialization as well. Every time that child gets sick, it seems like we all get it, so we were concerned about how much he should socialize in our attempts to keep Caleb healthy. She said that we can be pretty normal with him, but just make a somewhat more concerted effort to keep him away from sick children, or children who are sick often, use lots of hand sanitizer, and make sure he's bathed pretty often to reduce germs. If he shows any sign of infection, one of us packs up either him or Caleb and heads to my mom's to keep them separated until he's completely better. So for now, we will continue attending church, going to MOPS, playdates, etc. Once Caleb has had his BMT, I expect we'll crack down a bit more at least for the first 100 days post, but we'll just have to wait and see what that means exactly. They did draw for his HLA typing Tuesday, so when we go back two weeks from Tuesday, they should have the results of that and we can start the search for a donor.

Thursday, we went for Ayden's 2 year post transplant check up at the BMT unit. He already did all his annual tests including a GFR (kidney function test), chest x-ray, bone age scan, EKG, and an echo (heart ultrasound) a couple of weeks ago, so all that was left were the blood labs. They drew more tubes than I had ever seen in one place, though we did make sure it was below the safe limit. We don't have all the results yet, but his counts all came back looking great. Platelets are 216K, hemoglobin is 13, white cells are 8, etc, etc. Basically, he's doing awesome. He's almost completely caught up with his vaccinations now. He's basically a normal little boy. We couldn't be more blessed by how easily he made it through this process. I pray constantly that it will all go just as well for Caleb.

We are so very grateful for all of you and the love and support you've given us. I'm so thankful that we have such amazing people in our lives. I can't wait until we're past all of this and I can spend more time focusing on other people's problems instead of my own.

2 1/2 Weeks

2011-03-23T12:03:00.000-07:00

Well, it's been 2 1/2 weeks since Caleb joined us and there have been some ups and downs. Recovering from a c-section has not been one of the most pleasurable experiences of my life, though, when you consider that I'm up and about, doing chores, driving to doctor's offices, etc, just 2 1/2 weeks after major abdominal surgery, it's not that bad.

Caleb is doing ok. Everything was going along pretty well until Sunday night when we noticed one tiny speck of blood in his diaper. We decided, as it was so small, we'd just keep an eye on it. Then Monday evening, the day before his appointment with TCH Hematology, there was more, only streaky this time. I decided to go ahead and call the hematologist on call, though it was tempting just to wait until the next day. But with him being so small and just not knowing yet what it looks like when his platelets are at certain levels, I just didn't want to take the chance. Of course, they told us to come into the ER, so I dropped Ayden off with my mom for the evening and headed into Houston. We got there at 8 PM and left around 5 AM. Ty joined us as soon as he could when he got out of his class that he teaches Monday nights. Caleb's platelets were at 25K, which is actually higher than I was expecting. They transfuse anywhere under 30K with babies under 2 months old, though, so we had to wait for platelets to be ready and all that jazz. It took forever.

We got home, got about 2 hours of sleep, then got ready to head in for his appointment. Ayden also had appointments for some of his annual post-BMT tests since he'll be 2 years post on Saturday *\o/*. Caleb's appointment was a little unnerving for us. After a transfusion the night before, his platelets only went up to 32K. Ayden's counts always skyrocketed after a transfusion, so this minor rise is fairly concerning to us. Also, Caleb had a white lesion of some kind on the back of his throat and they're not sure what it is. They said it might be a viral infection, but he doesn't have any other symptoms, so they did a culture swab and we're just keeping an eye on it.

Ayden did pretty well with his EKG, semi-well with his echocardiogram, and not well at all with his chest x-ray and bone age scan. He really cannot stand x-rays of any kind. He's still got at least one more test to do. It's the GFR which is a kidney function test that requires, I believe, 4 blood draws, meaning he'll get an IV for it. Blech. I'm not sure if he has to do any other testing after that, though. Ayden's been doing very well adjusting to our new addition. I think he's at least somewhat relieved that Caleb's coming is all that's happened. We were gearing him up for a big change and he could tell something was coming, but didn't really understand what it was. Now that Caleb's here, it's almost like Ayden's attitude has become, "Oh, that's all it was? That's not really a big deal." :-D

So anyway, we'll be going in once a week to do labs on Caleb (platelet counts, any other blood tests he may need) and every other week, we'll have an office visit with the hematologist and possibly the immunologist to discuss how things are going. Either next week or the next they'll start the HLA typing and then start the search for a bone marrow donor if necessary. There's a 25% chance that he'll match Ayden's old HLA type, in which case Ayden's donor has already extremely graciously let us know that she's ready and willing to donate again. If he doesn't match that, however, they'll go ahead and start the search through the registry. Immunology also wants to do a full immunological workup on him to start assessing how effective they think his immune system will be.

So that's where we are right now. Otherwise, we're just thoroughly enjoying having Caleb with us. It feels much more natural to me this time than it did with Ayden. Shifting from "me" mode into "mom" mode was a very hard adjustment for me when Ayden was born, but it's so established at this point that it really hasn't been that difficult. I just desperately want Caleb to be ok and to come through all of this with as much finesse and ease as Ayden did. Please be praying that his platelets will stabilize somewhere and that he'll remain healthy as we continue. Thank you so much!

He's Here!!!!

2011-03-09T18:30:00.000-08:00

At 9:05 AM on Saturday, March 5, 2011, we welcomed Caleb Samuel Welborn into the world! The c-section was scheduled for Monday, March 7 at noon, but around 4:30 AM on the 5th, I started having fairly intense contractions 8 to 9 minutes apart. We called the hospital, and the doctor on call told me to go ahead and come in. Since we were only 2 days away from the c-section anyway, there was really no point in trying to stop the labor or anything like that, so in just a few short hours, Caleb joined us via c-section weighing 7 lbs, 8 oz and 20 1/2 inches long!

I was absolutely amazed and thankful at how calm I was going into and during the surgery. Having never had any kind of major surgery before (anything involving a scalpel), I'd been positive for months that I was going to have my first panic attack right there on the operating table, especially being fully conscious. I kept waiting for the panic to hit at just the idea of them cutting me open while I laid there fully aware of what was happening, but it never came up. I can only attribute this calm to God answering prayer as there really was no legitimate reason for it.

There were no complications at all with the c-section or the tubal ligation, and it was all over pretty quickly. Just to be safe since they were aware of the possibility for complications due to WAS, they took Caleb to the NICU for observation for a few hours, but released him to general nursery soon afterwards. His initial platelet count was 36K, and the next day stayed up at 34K. The next morning, however, it dropped to 17K, so they put him back in the NICU to receive a platelet transfusion, as they don't do anything specialized like that in the general

nursery. When I went to visit him, it became clear how traumatized I was by Ayden's 3 weeks in the NICU. I could barely hold it together. Pain, hormones, and lack of sleep didn't help either. I was so afraid it was going to be a horrible fight for us to get him out of there even though we know what we're dealing with this time and knew he didn't really need to stay. I got on the phone as fast as I could with the doctors at Texas Children's and they were soon in touch with the NICU doctors. We went into the NICU on the morning I was going to be discharged ready to fight to take Caleb with us, but there was no need. The hematologist at TCH had set the doctor's mind at ease enough that he had no problem letting us leave with Caleb that day. We were so relieved! I think it also helped that after his transfusion (50 mls of platelets), his

levels had gone up to 96K 4 hours later, and the next morning, had gone up to 101K.

We got home yesterday around 3:30 or so and Mom brought Ayden back home. He was a little leery of the new addition, but has adjusted amazingly well as of today. He's doing far better than I had hoped he would. Ty and I are still pretty physically and emotionally tired, but we're handling it. I think things would be a lot better if I could move around more like normal, but that will come in time. Caleb is a total sweetie, very snuggly and warm. He's nursing like a champ, which is awesome because I never got the chance to do that with Ayden. He sleeps a lot, of course, with a marked exception from about 3 to 5 AM :-\. He does wake up a little during the day as well, but early morning is his most active time. So far, we've seen no signs of the milk protein allergy that necessitated us putting Ayden on formula, so we're hopeful he doesn't share that particular problem.

For now, we're just keeping an eye out on things. At 4 days old, he has yet to show any petechiae, eczema, or bloody stools. I know some of these things took a while to develop with Ayden, though, so we'll deal with them if/when they show up. His first appointment at TCH is March 22 and he'll see his hematologist and his immunologist that day. They'll begin assessing his severity level, immune system, etc., and probably go ahead and start HLA typing as well, just to get the ball rolling. Only time will show us what kind of treatment Caleb will need. Ty and I need your prayers as we start this journey. As truly joyful as we are to have Caleb in our lives now, we feel like we've just begun the hardest fight of our lives. It was extremely hard to go through this with Ayden, and we didn't have a second child to consider at that time. We want to do right by Ayden while still making sure Caleb is healthy and taken care of. We're facing a lot of questions about how much Ayden should socialize in groups with other kids, etc., since we have to be extremely careful about any of us getting sick. However, pulling him out of socialization all together at his age seems like a bad idea as well. Please pray for us as we try to figure these things out.

In the meantime, I'll be home pretty exclusively for a couple of weeks at least since I can't drive until the Saturday after next. I'm hoping I don't go completely stir crazy. :) Of course, right now, walking around for any length of time doesn't sound very appealing, so it hasn't become an issue yet. Thanks for checking in on us! We love you all and greatly appreciate your support!

Quick update

2011-02-21T20:30:00.001-08:00

As of last Sunday, I am 37 weeks along now. Full term! Woot! At my last two weekly appointments (last Monday and this morning), I was only dilated about 1 cm. This morning she said I'm effacing too, but not dilating any more yet, so that's good. Caleb seems content to hang out in the womb longer than Ayden did. :-D Next week after my regular check-up appointment, we'll head over to the hospital for my pre-op appointment where we'll talk to the anesthesiologist, etc, about the c-section and then a week after that, we'll get to finally meet Caleb! Super exciting!

That's about all that's new!

Gearing Up for Caleb!

2011-02-03T13:02:00.000-08:00

I'm now 34 1/2 weeks into my pregnancy, a mere week and a half from the time I actually went into labor with Ayden! Because of our past experience, the hospital bag is totally packed and ready by the door, the car seat base is installed and the car seat waiting in the living room, ready to be thrown in at a moment's notice, the play yard/bassinet is all set up in our room, the papasan swing is standing in the kitchen, and all the other little paraphernalia that babies require is ready.

I am exceedingly uncomfortable at this point. I really don't remember it being this bad with Ayden. Caleb feels much bigger than Ayden did to me, though I'm not THAT much bigger on the outside than I was when Ayden was born. Ayden was always so low in my abdomen, but Caleb is right up there near the top. It makes it hard to sit without leaning way back all the time. Lol. My legs and hips hurt like crazy and my belly feels stretched to the limit. I've had to move to the couch to sleep because the bed just became far too uncomfortable. Something about the couch cushions gives me better support. But, it's just a few more weeks, so I imagine I'll survive. The good thing about all of this is that I'm so ready to be done with the pregnancy, I'm no longer very nervous about the c-section. It seems a small price to pay to be done with all this misery. :-D

I emailed Ayden's old hematologist, Dr. Lakshmi Venkateswaran to ask her about who will be Caleb's primary doctor once he's here. With Ayden, we started out in Hematology at TX Children's and were there until his transplant. Dr. Lakshmi mentioned once that usually WAS cases are seen by Immunology primarily, but since we'd started with Hematology, we'd just see Immunology periodically, but his regular check ups would just stay in the same place. Well, we like Dr. Chinen, Ayden's immunologist very well, but we really really love Dr. Lakshmi. Besides just being an outstanding, top-notch doctor (which the immunologist is as well), she always took a very personal interest in Ayden. When I emailed her and all of Ayden's other doctors originally about Caleb's amniocentesis results, she contacted us immediately and gave us a checklist of everything we needed to know to be prepared. She was the one who arranged to have Ayden's paperwork sent to the hospital in Cincinnati so they could just track down that exact mutation instead of sequencing the whole gene, and she had it to them later the same day I let her know we needed it. She's always been just amazing. So, I told her that while we of course very much like Dr. Chinen, we'd gotten so "at home" in the hematology clinic that we'd actually like it if she were Caleb's "main" doctor like she was with Ayden. She said that would be just fine with her and Dr. Chinen agreed that it was fine as well. I'm so glad. Anything that feels like familiar ground is comforting right now.

I asked them also about when we would start seeing them after Caleb's birth. Dr. Chinen said Caleb will need a full immunological work up done around 7 - 10 days after birth and hematology can see him around the same time to start determining how stable his platelet counts are. Dr. Chinen said that while Caleb's WAS presentation will most likely be very similar to Ayden's, there's also just really no guarantee that will be the case. I find myself hoping that his case is less severe--that he'll have stable platelet counts and few infection problems and that they'll decide he really doesn't need the BMT. Ayden, of course, had an absolutely beautiful (as these things go) BMT experience, but all the risks of it have been scrolling through my mind over and over again for weeks now that Caleb's birth is getting so much closer. We're still preparing to have to go through the BMT again later this year, but I can't help but hope it will end up not being an issue.

We took Ayden to a sibling class at the hospital where Caleb will be born (Woman's Hospital of Texas) in an ongoing effort to give him ANY idea of what's coming. I know he knows something is coming and that it has to do with a baby, but I still don't think he has a solid grasp on the fact that we'll have a new baby in the house to stay. The sibling class went well, though I still don't think it strengthened Ayden's grasp on the concept. He enjoyed playing with the baby doll, though based on what he did with it, I'm not sure he'll be allowed to touch Caleb at all.

:-D More helpful was the tour of the new building they've built since Ayden was born. At least we have a little better idea of where to go when it's time for Caleb to come, plus we got a few questions answered about the differences in how to prepare for a scheduled c-section instead of a regular birth.

All in all, I think we're about as prepared as we can be for all that's coming. Once Caleb gets here, we'll just take one day at a time and see where everything goes.

In other news, I have a brand new niece as of yesterday morning! My brother and sister-in-law welcomed number 7 into the fold. Annalise Faith Fagala weighs 7 lbs, 12 oz and is 20" long, born at home (no meds) at 4:24 AM. Blech. lol. More power to my sister-in-law. Unfortunately, even though they live right next door, we haven't been able to meet her because some of her older siblings have been sick with a flu-like illness and, being this close to giving birth to a possibly immuno-compromised baby, we just don't want to risk any of us getting sick.

That's about it for now. I'll keep you updated, though I'm not expecting too much more excitement until Caleb actually gets here! :-D

2011-01-15T06:00:00.001-08:00

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Great News!

2010-12-31T16:08:00.000-08:00

I got the call from the doctor's office yesterday that the results of the 3 hour glucose test I took Wednesday came back normal! I don't have gestational diabetes this time! :-D I'm SOOOO psyched. I knew there was good reason to hope for that to be the case because I'd been checking my blood sugar pretty regularly and it had been well controlled even after less-than-balanced meals. With everything else we're preparing for, it's nice not to have to pay insane attention to my diet and the timing of my eating. That's the part I hated the most.

I'll be 30 weeks on Sunday. Just 2 months and one week left before we get to meet Caleb! I'm so excited! We managed to get Ty's office and Ayden's room switched successfully this week. Ayden now has the bigger room and Ty's stuff is crammed into the nursery-sized room. :-D Our bedroom has been taken over by 4 large bookcases to make more room in the office. However, now there's room for Ayden and Caleb to share a room once Caleb is old enough.

My next appointment is on my birthday on the 10th :-D. It'll be a nice birthday present to get to hear Caleb's heartbeat again. We officially got the c-section scheduled for March 7 on Wednesday, so now we're just continuing to pray that he'll stay in there that long.

Anyways, that's where we are on the baby front! Everyone have a very happy New Year and a fun and safe New Year's Eve tonight!

Third Trimester Coming Up!

2010-12-17T07:27:00.001-08:00

Well, on Sunday I'll be 28 weeks and the third trimester will officially be here! I'm super excited to meet our little Caleb and I have a feeling March is going to sneak up on us faster than it feels right now. I'm pre-registered at the hospital and we've got a sibling class and tour scheduled to try to help Ayden start understanding the concept that we'll have a new family member soon. He shows no comprehension of that fact right now. Ty and I, however, spent a good part of last night just staring at my belly as Caleb moved around, making it look like I have some kind of alien in there. I love it, of course, because it means that everything's ok with him, but man it feels weird! :-D

I had another prenatal appointment on Monday and Caleb is right on track as far as growth and heart rate and all that. I also did the one hour glucose screening and got the call back Tuesday that it was elevated, so I'll have to do the 3 hour one too. Ugh. I had gestational diabetes with Ayden, but I was really hoping to avoid it this time. My next appointment is in 2 weeks on the 29th, so I'll do the 3 hour test then and hopefully I'll somehow get around having GD again. Ha. Long shot, but worth hoping for.

Ayden is doing great right now. He's turning into a big boy right before our eyes. After over a year of only taking naps in our bed after I'd rocked him all the way to sleep, he's suddenly decided that he can take naps in his crib and that I can lay him down there before he's totally asleep. That couldn't come at a better time. I was really wondering how I was going to keep that routine up once Caleb joins us. He's also decided he doesn't need his high chair anymore and instead opts for a booster seat at the table. He runs and gets himself a fork when it's time to eat and insists on having "dip" (ketchup) with everything.

My house is far cleaner than it's ever been thanks to the nesting instinct kicking in with a vengeance. It also helps that I'm pretty confined to the house these days thanks to Ty's truck being incredibly dumb. We've been without it for about a month now save for a few trips out of the shop only to go back in later the same day. Ty has to take my car to work, so unless I'm able to borrow a car or bum a ride, I'm stuck. It sucks, but at the same time I think it's actually saving us a lot of money and, like I said, the house is clean! Silver lining, right? Still, I look forward to regaining some freedom in the near future.

Other than that, we're just preparing for Christmas. I just need a few picture frames to round out the presents. Today is Ty's last day of work for the semester until the 3rd, so we're really looking forward to having him home more (not to mention having access to the car!!!). We're planning on moving Ayden's room into Ty's current office and vice versa over the break. The office is bigger, so once Caleb is home from transplant, he and Ayden can share that room. We're going to convert Ayden's crib to a toddler bed at the same time. Eeeek! lol. Hoping that goes well. I can't wait to get that done because it means I get to decorate a little! :-D

We hope everyone is doing great, and since I probably won't update before then, everyone have a very merry Christmas!!!

The Waiting Game

2010-11-18T05:21:00.000-08:00

Well, not much new to report. I'm now 23 1/2 weeks pregnant. We got to hear little Caleb's heartbeat again on Monday, and it was good and strong, 143 BPM. He's a little wiggler, that's for sure. I can feel him a good bit of the time, but Ty has yet to feel him "for sure" through my belly. He says it's hard to differentiate between his possible movements and my breathing and heartbeat. But I don't think it will be too long before Caleb gives him a definite kick. He sure gives me plenty! :-D It's such a relief to be feeling him with some real consistency. It makes it much easier to get through the month between prenatal appointments now. The first few months, I thought I would go crazy the 2 weeks before my next appointment.

We had Christmas/maternity pictures taken with our friend Amy (whose website you'll find a link to on the left side of the blog under "Other Blogs/Links"). She's awesome. Here's our "sneak peek" pic of some of the maternity pictures.

Ayden is doing well, and getting closer and closer to being caught up on all his shots. He had some more last week and spiked quite a fever that night (102.6 F was the highest I got on the thermometer) before we gave him some Children's Advil and it went down. I'm a little concerned that he might be having a bit of a speech delay, which is quite common in post-BMT kiddos. He's not drastically far behind, but he's not forming sentences on his own at all yet. He talks quite a bit, but most of it is still gibberish. He has finally started asking for things by name (e.g. milk = "nuik?"), but I hear other kids his age saying, "Mama, I want milk," and he's just nowhere near that. He's also showing absolutely no interest in potty training, and I am at a loss as to how to get him interested. He likes watching Ty and me in the restroom, but doesn't seem to correlate that it's something he should be working towards. He has gotten a lot less fussy about diaper changes, though, so maybe he's starting to not like the feel of stuff in his diaper as much, which could be a sign of getting ready. Who knows?

We have figured out recently that we've had a closet eater all this time without knowing it. I started thinking maybe we were giving him a bit too much milk each day, so I asked the pediatrician how much he should be getting. He said no more than 16 - 20 oz a day. *Cough...cough* Ayden had been draining 5 - 7 nine oz cups of milk each day, equalling somewhere between 45 - 63 oz a day. So, I started giving him one cup in the morning and one at night and his appetite has skyrocketed! It's now very rarely an issue to get him to eat his meals. Funny how that works, huh? And he's definitely a growing boy. He now weighs around 30 lbs and is over 3 feet tall, somewhere around the 75th percentile for height for a child his age. I have a feeling he's going to tower over Ty and me when he gets older. :-D

So, that's about it for now. Ty continues PhD work and being department chair of the audio and film department at HCC. I've started taking Ayden to Toddler Time at the library and Chick Fil A on Thursdays, started going to a stay at home mom Bible study on Tuesdays, and gotten involved with my local MOPS (Mothers of Pre Schoolers) group who meet once a month. Gotta get as much socialization as possible before our next stint of mandatory isolation during and after Caleb's BMT. Keep praying for us, especially right now that Caleb stays put until the scheduled c-section on March 7th at 39 weeks. I'm not looking forward to the c-section as I've never had any kind of major surgery and only one (ear tubes) that even required anesthesia. I would really rather avoid making it an emergency c-section by going into labor before the scheduled one. Thanks for the prayers and support.

Love you all!

Prenatal appointment

2010-10-18T12:16:00.000-07:00

Well, not too much new, but my ob/gyn said that we'll schedule my c-section for March 7, 2011 when I'm 39 weeks along. I'm hoping I can keep Caleb in that long. My family has a bit of history for going into labor early and of course, I had Ayden at 36 weeks, so be praying Caleb will stay put that long! If I do go into labor, she said they'd do it early, which I assume means an emergency c-section, which I'd rather avoid.

Also, I'm going to see a cardiologist in a couple of weeks because I've been having some irregular heartbeats and episodes of pretty severe breathlessness. No chest pain or anything, but it's still weird, so my doc referred me over to the cardiologist. We'll see what she says!

Thanks for your prayers and support! Love y'all!

What We Know So Far

2010-10-14T17:02:00.000-07:00

OK, so since getting the news that Caleb is also affected with WAS last night, I started getting busy getting things ironed out. It makes me feel better to be doing something productive and getting all my questions answered, I think. I got in contact with Ayden's old immunologist at Texas Children's (who used to work at the National Institute of Health) and asked him if knowing Caleb is affected merits any additional fetal monitoring or if there would be any reason to do the c-section early and also if we can expect Caleb's WAS to manifest in the same way Ayden's did or if it could be different. He said that he'd never heard of any bleeding issues or anything in the womb for WAS babies, so no additional fetal monitoring would be necessary, and that there would be no reason to get him out earlier than term. I'll talk to my ob/gyn on Monday and see if we can plan for the c-section right at 37 or 38 weeks, though, instead of waiting for 40. I went into labor at 36 weeks with Ayden, so I'm concerned that trying to wait would result in an emergency c-section while I'm already in labor, and I'd rather avoid that if possible.

I also spoke with Ayden's old hematologist this morning and she recommended a blood count taken very soon after the delivery to check his platelets, and then a head ultrasound very soon after as well, to make sure there's no hemorrhaging in the brain or anything (very unlikely, but should be checked anyway). She said, barring any other issues, there's really no reason to keep him in the NICU unless his platelets are just extremely low and that as long as they're above 30,000, they don't need to transfuse and we can just start getting check ups at Texas Children's. She said it would be a good idea to watch him carefully for any infections for a few days, but since I'll be having a c-section, I'll be in the hospital a little longer anyway, so that should be enough time. The great news about all of this is that Ayden's pediatrician, who is absolutely awesome, has rights at the Woman's Hospital, so he'll be able to handle all of Caleb's testing and anything he needs instead of us having to find a temporary pediatrician to take care of him while he's there. That means we can work all of this out with him ahead of time and have it settled once Caleb is born.

Both Ayden's immunologist and hematologist said that given that Caleb has the same mutation as Ayden and it's in the same family, we could most likely expect Caleb's WAS presentation to be very similar to Ayden's. This means that there's very little chance that Caleb won't need a bone marrow transplant as well. SO, given that, I also spoke with Ayden's BMT doctor and asked her what the timeline might look like for Caleb's transplant. She said it would take a couple of months to do the HLA testing and find a match and that with WAS, it's not absolutely vital to get them in as early as possible, so we could do it around 6 months or so if we wanted to wait a bit. I asked her what she thought about doing it around 3 or 4 months old since that would put us in summer and Mom would be off from school to help watch Ayden, and she said that would be fine as well. Feels a little weird to be negotiating the timing on a bone marrow transplant for an unborn baby, but then again, there's nothing really normal about WAS.

Ty and I discussed last night how to juggle taking care of Ayden during Caleb's hospital stay. He has many options of people to stay with (major advantage of living close to a lot of family and really awesome friends), but I told Ty I just don't think I can go very long without seeing him on a regular basis, and I'm sure I'll feel the same way about Caleb as well. He agreed, so we started figuring out how to work it out. Ty is going to try to get a leave of absence from his PhD program, but if he can't, he's planning to quit it all together. While I hate for him to do this after all his hard work, obviously there are more important things. The fact that he's the chair of his department at HCC actually helps out as it keeps his hours steady, so we figure that I'll spend the day at the hospital with Caleb while Ayden stays with someone in Baytown and Ty goes to work. Then Ty will come to the hospital after work and spend some time with us then we'll alternate nights with one of us staying at the hospital and one going home to be with Ayden. We want to try to keep Ayden's bedtime routine as normal as possible for him. Then in the morning, whoever's home will drop Ayden off and, if it's me, go back up to the hospital, or in Ty's case, head to work. Then hopefully on the weekends Mom or my aunt or sister or someone will be able to bring Ayden up to the hospital and stay with Caleb for a few hours while Ty and I take Ayden to a park or do something fun with him as a family.

We talked briefly about trying to keep Ayden away from kids during this time, but that just seems very cruel and unfair to him. My fear is that he'll get sick and then neither Ty nor I could be around him until he's better. Or if one of us is around him, we couldn't see Caleb during that time. It's absolutely vital that I stay healthy as I'm the one who will be spending the most time at the hospital. They don't strictly prohibit sibling visits, but strongly discourage it if the sibling is under 10. Kids are just so germy! So, it's not a good idea to have Ayden in the room with Caleb at the hospital. We're praying and praying that Caleb's transplant goes as smoothly as Ayden's did and we'll only be in the hospital for a month. At that point, we'll have to stay somewhere near the hospital again since we live further than 20 minutes away, but it's possible for Ayden to stay with us wherever that is, as long as he's healthy. We'll be going a little crazy on Ayden and ourselves with the hand sanitizer during all of this. :-D

Everything after the transplant is subject to change based on how well Caleb is doing. I am praying and hoping and pleading with God that it will go as smoothly as Ayden's since he had just about the picture-perfect BMT experience. I want my family to be all together as soon as possible!

So, please keep us in your prayers as we go forward. It'll be a long road, but worth it in the end. We're certainly not the first family to have 2 boys with WAS and we're glad that at least this time we have such a wonderful community of support already built up. I know that God can bring us through this again as He did before and I hope that through all of this, we will learn to trust and love Him even more.

Love you all!

Paige :-D

Amniocentesis Results

2010-10-13T19:39:00.000-07:00

Well, we got the news that we really didn't want today. Our sweet Caleb is also affected with Wiskott-Aldrich Syndrome. I've already sent out emails to several doctors to see what more we need to know. I'm not sure if knowing he's affected merits extra fetal monitoring, bedrest towards the end (since I went into labor at 36 weeks with Ayden), or anything else.

What we do know at this point is that I will have a c-section (and a simultaneous tubal ligation :-) when it's time for him to come to prevent severe bruising or hematoma. They won't jump into a BMT as soon as he's born, so it'll be at least a few months before we're on that path again. I already asked in the email to verify, but I believe that sometimes the same mutation can manifest in different ways. I suppose that means it's possible that Caleb could be better off than Ayden was and not even require a transplant. It could also mean that he could be worse off and need one even more. I guess we'll see.

That's really all we know at this point. I'll update as we know more. Please be praying! Love you all!

Ayden's Donor's Story

2010-10-08T06:45:00.001-07:00

Earlier this week, we finally got in contact with Ayden's bone marrow donor! She let me know that she wrote a couple of notes on Facebook about her experience with the donation and I asked her if I could repost them here. I know some of my fellow WAS-ers will be interested to see the other side! It's pretty long and detailed, but it's an amazing story. I can never express my gratitude for this woman's decision enough! Enjoy!

HERO Part I
–9-digit donor

It was like winning the lottery!
On December 10th, I went to pick up my mail at the UPS Store per usual. There was a slip stating there was a package from FEDEX, no surprise there, I was awaiting one of many books I had ordered for my daughter for Christmas – yes, my teenage girls wanted books for Christmas! Then I saw who the package was from – the National Marrow Donation Program®. Wow! I don’t even know how many years it’s been since I attended the bone marrow drive for my high school counselor’s 3 year old son, Patrick, who had been diagnosed with leukemia. I had attended the drive against my (ex) husband’s wishes, with my 4 toddler girls in tow – he never did find out. I wasn’t a match and I’m not sure if one was ever found, but I do know, Patrick did pass.

I immediately opened the package. The included letter stated, “When you joined the National Marrow Donor Program® Registry in 1/23/1994, you did so with the knowledge that one day you could save a life. You were just identified as a possible marrow or blood cell donor for a male patient with Wiskott Aldrich Syndrome” – What’s that? ”Please contact us within 24 hours to let us know if you would like to proceed…We need to hear from you even if you are not interested, so we can continue the search for another donor without delays for the patient.” “In the meantime, please visit In the Know: A Donor’s Guide at http://www.marrow.org/HD/InTheKnow.” The package also contained a brochure, Confirmatory Typing for Blood Stem Cell Donation, which provided information about the next steps: Confirmatory Typing, which stated, “About 8% (1 in 12) of donors who reach this stage go on to donate”; Workup; and Donation. Now, I have been given the opportunity to help another.

I called immediately and left a message. I was excited and wanted to talk to someone, so I called my co-worker and told him about what I received and that I had already called. I’m not quite sure what I said or was about to say, but he blurted out that he’d give me a ride for the donation, though I hadn’t even thought to ask, I accepted his offer. Later that evening, I researched Wiskott Aldrich Syndrome and reviewed the information about bone marrow donation. According to Wikipedia, “Wiskott-Aldrich syndrome (WAS) is a rare X-linked recessive disease characterized by eczema, thrombocytopenia (low platelet count), immune deficiency, and bloody diarrhea (secondary to the thrombocytopenia)… WAS generally becomes symptomatic in children. Due to its mode of inheritance, the overwhelming majority are male. It is characterized by bruising caused by thrombocytopenia (low platelet counts), small platelet size on blood film, eczema, recurrent infections, and a propensity for autoimmune disorders and malignancies (mainly lymphoma and leukemia).”

I received a call back on December 12th, stating, “that we have a patient here…” They didn’t say where, but I recognized the area code. I answered all of their questions, very similar to the questionnaire one would fill out before giving blood, and I was told they would be sending me a kit to take to a clinic out here (different coasts!) for further testing – that never happened. I received a call from a local number on December 15th as my information was transferred here – I happen to live in an area that has a blood clinic with an NMDP® coordinator here that could handle the testing and this made everything much simpler. The following day, I was at the local blood clinic getting tested, I was told there would be about 3 – 4 tubes drawn, NOPE, it was 7! This was the “Confirmatory Typing” step stated above.

I had a missed call from what looked like the number for the blood center on January 21, 2009. I checked my voicemail and the cryptic message was quite disconcerting, like they found something wrong in my testing. I called the NMDP® coordinator back immediately. After some phone tag, she informed me that I was the best match at this time and asked if I would like to proceed. Of course I would. We then set up the information session between me, the NMDP® coordinator and a blood center doctor for the upcoming Friday, January 23rd. I had read up on everything pertaining to the procedure, and the other procedure option, Peripheral Stem Cell, and so on, therefore I had decent knowledge as to what to expect from the actual bone marrow donation, but this information session also provided me with even greater details.

The Workup!
I had made the decision prior to the information session that I would prefer to donate bone marrow rather than stimulated peripheral blood stem cell. I could handle a bit of pain from donating marrow more easily than the potential side effects – flu like symptoms – of being subjected to the Filgrastim injections for 4 days prior to the peripheral stem cell collection. The NMDP® coordinator greeted me at the blood center and brought me to another area where we met the Dr. providing the information. There were two check lists – one for Marrow Donation Information Session and one for Stimulated Peripheral Blood Stem Cell (PBSC) Donation Information Session. Most of the session was spent talking about marrow donation since I had already decided.

The Marrow Donation form provided me with: my NMDP# - XXXX-XXXX-X; How the patient and my own HLA Typing compare – Donor: A_X_,_X_ B_X_,_XX DR_0X,_0X vs. Patient: A_0X,_0X B_0X,_XX DR_0X,_0X – with the only variance being a “0” in front of the numbers in group A and the first number in group B; and information about the patient – Age:_0_Gender: _M_ Diagnosis: WAS.
The Dr. went over the following:

· Patient Conditioning Schedule
o Possible toxicity of transplant
o Engraftment
o Hospital stay, length of recovery
o Conditioning protocols, chem.+/-radiation
· Rationale for Requesting Marrow vs. Stem Cells
· Marrow Donation
o Sign donation consent – they asked me to take the weekend to read all of the information over before signing, but I had made my decision back in 1994 when I first went in for the bone marrow drive
o Physical exam, lab work, EKG, chest x-ray
o Pre-collection blood samples & research samples for CMV study – I was chosen to be a part of a research study and consented seeing as how they were already drawing blood, what would another tube or two hurt?
o Repeat pregnancy test – N/A
· Marrow Donation Timeline
o Suggested collection date: 3/26/09
o Store_0_autologous blood unit(s) – this would be blood drawn just in case I needed a blood transfusion after the harvest, but since I was donating to a baby and it would be such a small amount, there was no need
· Marrow Collection Procedure
o Amount of marrow requested: 320 mls, 70 x108 cells
o Maximum amount based on donor size: 1300 mls, 286 x108 cells
o Anatomy – I was shown a plastic model of the hip bones and the actual needle that would be used. It was explained to me that since I was donating to a baby, that there would be about 1/2 dozen “drills” into one hip to extract what amounts to be approximately 2/3 of what would be taken from a blood donation
o Anesthesia (pre-op consultation) – day before surgery
o Admit, OR, prep, collection, outpatient – and I made note of my allergy to Morphine
· Donor Recovery Expectations
o Activity level
o Complications – extremely rare
o Time off work (sick vs. vacation) – some companies forgo their employees having to use these benefits and allow for paid time off
o Letter to employer – if needed
· Communication w/Patient After Transplant
o Time Frame – about 2 years
o Confidentiality – I, and the patient’s, identity is tracked by a number and protected at all times
o TC allows patient contact? Yes No
o TC provides patient status reports? Yes No –I can find out how the patient is doing in 6 months
· Deferral from Blood Center Programs
o Whole Blood and Apheresis – 3 months
o Bone marrow/stem cell – 1 year (unless it’s for the same patient)
o Possibility of Second Donation for Same Patient the procedure doesn’t always work out as planned and sometimes a second donation is needed
· Future Contact from Bone Marrow Donor Program
o Media coverage – basically the possibility of being showcased within a brochure as they do everything possible to keep a donor’s identity anonymous
o Talking with potential donors – I opted out of meeting others as I didn’t want too much information that may cause me to change my mind
o Annual follow-up – the NMDP® coordinator calls daily until I’m close to 100% and then periodically until reduced to annually
· Materials
o Insurance – Medical Expenses, AD&D, Temporary and Permanent Total Disability were all covered by NMDP® all in relation to the bone marrow procedure
o Consent Forms – Consent to Donate Bone Marrow as well as the Research Study consent forms
I was provided with the NMDP® Now That You’re a Match booklet and also blank expense reports for out of pocket expenses in relation to the donation process. The booklet and other information read went on about the benefits of the donor – none except for the knowledge that you helped to save a life – and the potential stress one may feel going through this process and the possibility of the outcome not being what is wanted for the patient. The NMDP® coordinator and Dr. wanted me to mull it over over the weekend and I could either drop off the consents or fax them over once I had decided. I went back to work after this long lunch appointment and signed all of the consents. I was excited, like I said previously, I had made the decision to donate back in 1994; I wouldn’t back out now. I waited until Monday morning to fax over the consents. I received information for the appointment at the Cancer Center not too long afterwards – it’s about a 2 week wait to get this appointment, so the NMDP® coordinator worked on getting the appointment that Friday.

But then there were bumps!
The physical at the Cancer Center was scheduled for Monday, February 9th. It proceeded as a routine physical, but also included additional blood work – this time 12 tubes were drawn! – EKG, chest x-ray and for women, a breast exam, pregnancy test and UTI. I had also been provided with 2+ boxes of Ferrous Gluconate UD*325mg that I was to “take two tablets three times daily starting 3 weeks prior to marrow harvest.” I had a lump on my left breast since 2002, so I didn’t have a concern, but I wasn’t given clearance. The Dr.’s would’ve felt better if I had a mammogram – for my safety, my concern was the patient’s safety. Since it was quicker to schedule a mammogram through my own doctor – never mind the fact that I didn’t go when I was supposed to on my last birthday – that’s what I did.
I hadn’t any fears or concerns when I visited the Breast Center for the mammogram on the following Monday. The lump hadn’t changed and felt the same as always. But, in the midst of the exam, I came to find out that there was a second lump that I didn’t know about, though it was a bit disconcerting, I brushed it off. I left with the knowledge that either I’d be receiving a call from my doctor in 3 days if there needed to be follow up, otherwise I’d receive a letter in 10 days that everything is fine.

After leaving the Breast Center, I called my aunt to see how my grandmother was doing. She informed me that I needed to say my good-byes at that point and she put the phone up to her ear. About 2 hours later, she had passed. I hadn’t received a phone call from my Dr. before leaving for the funeral on Friday, February 20th, so all of that was put completely out of my mind and I was now focused on my grandmother and my family while I was out of town. The NMDP® coordinator called me that following Monday, while I was still out of town, and I told her that all was ok since I hadn’t received a call, but also gave her the information to make sure she received copies of everything. And, when I arrived home, not only was there a letter from the Breast Center, but also one from my Dr.’s office. I expected both to say that all was ok, but it wasn’t. It was too late to call my Dr.

The following day, I was back at work. I called my Dr.’s office and then scheduled the follow-up mammogram and ultrasound about a week out. Yet the NMDP® coordinator needed me to put a rush on getting the ultrasound and mammogram immediately – there had been an appointment at the Breast Center available that day at noon. I have such a great boss that he had no problem with me taking a slightly longer lunch to get these tests completed immediately, Thursday, February 26th. This go round, I was a bit concerned waiting in the waiting room. I tried putting it out of my mind that it’s nothing, because at this point it is nothing. The mammogram was a bit more intensive this time and the ultrasound initially was found to be just fine, then the Breast Center Dr. came in and had me concerned for a bit, then all was fine again. I left again with the same knowledge, that either I’d be getting a phone call from my Dr. within 3 days or a letter in 10. I received the phone call in 3.

HERO Part II
–9-digit donor

But then there were bumps! continued…
I had an asymmetrical lump that either needed to be biopsied, but due to the size – large and widespread – an MRI was the better option. I wasn’t able to schedule the MRI until Friday, March 6th. Due to these complications, and the uncertainty if I’d be clear in time, my additional blood work that was scheduled to be taken on the 2nd, was cancelled. This was upsetting. Up until this point, my only concern was, “who will donate in my place?” I knew I’d be fine. If anything had come up as malignant, well I’d go through the treatment and then I’d be fine. That night, I did cry. Not so much for me or for fear of the possibility of being diagnosed with breast cancer, but for the simple fact that likely this would be nothing and it’s just complications that always seems to happen – something that I just had to go through.
That seemed to be the longest 4 days of my life. Then the day came for the MRI. Traffic was ridiculous! It was a complete nightmare; I was not going to make this appointment. I called. They said they’d wait for me. I was the last appointment of the day and this procedure takes about an hour. I finally made it, about a half hour or so late! Due to the stress from trying to get to the appointment any anxiety I had subsided and I was able to go through this with clarity that this is “just another test”, not a result – since I had to lay uncomfortably on my front, I relaxed the best I could and imagined I was getting a massage. Again, my results would be available in 3 days (in order to proceed with the harvest on March 26th, we had to have the results on that 3rd day) and if there was a problem, I’d receive a call from my Dr.; otherwise, I’d receive a letter in the mail in about 10 days. I left completely relieved. I knew I was ok. Went home, and took my first set of iron supplements in preparation for the harvest – 2 Ferrous Gluconate 325 mg, 3 times a day.

And then “All Cleared”!
That 3rd day sort of came and went, at least when it came to my Dr.’s office – you’d of thought they would’ve called either way! Anyhow, my NMDP® coordinator, the insistent as always – nice lady, just needs a little work on her soft skills – Emailed me first thing asking for the results. Instead of just setting around, I called to see if my results were available – they were and had already been sent to my Dr. The woman I spoke with was nice enough to fax over a copy of the reports to my NMDP® coordinator immediately which, in turn, were forwarded on to the Cancer Center Dr. By the end of the work day, I was anxious again. My NMDP® coordinator had been insistent about everything and I didn’t hear back from her. Thoughts crept in, but I continued taking the iron supplements as if the harvest was going to happen on schedule.

The following day, March 11th, I received an Email from my NMDP® coordinator with the subject, “All cleared,” with the message stating, “Good news!! Yay...The doctors signed all the paperwork and we are all set for the marrow collection for 3/26. There will be a pre-surgery appointment on 3/25, which I will let you know when I receive the appointment schedule. We still have to repeat the infectious disease testing and research samples. Would you be able to go to the Blood Center on 3/16 (perhaps at lunch time) for the draw?” Of course I was! But, then, the realization that the testing needed to be completed sooner, my appointment was changed to the following day, March 12th. That blood work appointment was a story in itself; this time they 13 tubes were drawn – ugh! I finally received the letter from my Dr. on March 17th, saying that everything was fine and that the lump was benign – JEESH.

The pre-surgery appointments ended up taking all day! This was not routine, so due to all of the waiting around, I ended up with $15 worth of certificates to the cafeteria there in the Cancer Center – yippy! Of course, there wasn’t time to really use them. At the first appointment on the Transplant floor of the Cancer Center, an additional EKG was taken, routine height, weight and vitals that occur with any doctor appointment, and then, more blood! If I was capable of getting pregnant, they would’ve taken a pregnancy test as well. I was given some surgical soap to wash with that night and in the morning to prep the site. They also provided me with gauze, tape, cleaning solution and band-aids for care of the incisions after surgery. They really didn’t want me there too long as they do everything possible to keep anyone from finding out that I (or whomever) was a donor. The Dr. who gave the “all clear” and who was to perform the harvest wasn’t available at the Cancer Center while I was there, but he was at the University where the harvest was to be performed and where the anesthesiology appointment was later that day.

The anesthesiologist appointment was routine. Again, they take your vitals, and it is more of an information session – I have had general anesthesia previously, so we were able to discuss how I handled it and how they could make coming off of it better (I get severe shakes, so they would provide a demurral shot to take care of that side effect).

The Donation!

At the end of the day, I finally met the Dr. One of the nicest and most knowledgeable Dr.’s one would ever meet. Of course, my chart was missing, but luckily, I still had the form from the information session that signified the amount of marrow being requested 320 ml, but 400 ml would be harvested. He calculated out loud that they would need to drill in 40 – 50 times within both hips, WHAT?!?!?! He explained that with each aspiration, they can only take at most 10 ml. Normally, the amount with each aspiration is only 5 – 10 ml. If I was donating to an adult, it would be even greater. He explained that after 10 ml, there is no longer marrow being collected, but blood, and that is not what is needed and can also make the donor anemic. As a person ages, fat cells build up, therefore, additional aspirations would be needed as there could be as little as 3 ml of the “good stuff” harvested with each aspiration. He went on about all of the possible side effects that could occur after the harvest. From what I recall, there is the possibility of infection at the incision site, or hematoma, scar tissue, etc… Also, that I may feel a heavy sensation on my front side, as if I had been laying down for a long period, because I was. The procedure itself would be painless, as I would be under general anesthesia and pain medication would be provided. The bone marrow would replenish itself within 2 weeks. I had assumed that the “drill holes” would heal like a broken bone and I was correct with that assumption, the “drill holes” would heal within 6 weeks.

Well, here it is, Thursday, March 26, 2009, right on schedule. I arrived at the University by taxi by 6:15 a.m. Good thing too, there was a waiting line! I couldn’t believe the number of people that were there waiting to be registered for surgery. I registered a little after 6:30 a.m., was given a cup for a urine sample, and I was called in almost immediately after leaving the restroom. I wasn’t given the opportunity to call home and check on the kids as the technician informed me that it was my time and that I didn’t need to be worrying about anything except getting some rest; that’s what I did. The nurse was great. She made a point to let others know that I was an “altruistic donor” and that I did not know the patient, other than it was a male infant likely on the opposite coast near where I grew up. Yet the nurse did say, “In two years, maybe you’ll meet.” The anesthesiology technician, who came in to start my IV and hooked me up to the heart monitor, was a trip! When the other technicians came in to draw blood, she used the start of my IV and drew some out with syringes and handed it over to the technician for them to draw from – I was not to be a pin cushion today J Anyone who entered made sure the curtain always stayed closed as others weren’t to know who I was for my privacy due to the fact that I was the 9-digit donor. My only thought, which I verbalized, was that a bunch of strangers were going to see my bottom, and then, I was off and asleep before I hit the operating room.
I woke up in the recovery room with little pain and a bit of shaking, which was taken care of immediately with demurral. The surgery had been completed by around 8:30 a.m., only taking an hour. After a bit, I felt pretty ok, a little loopy, but ok. I did take some pain medication shortly after that, more for fear of severe pain to come as the pain I felt wasn’t much at all. I was given a few soft items to eat and something to drink. Once I was able to keep food down, I was free to go. I was fully capable of dressing myself, sitting up, walking around, bending, everything. They called my co-worker and he was there to pick me up by the time I was dressed. He even remembered the pillow for my bottom. The turnaround for my co-worker was quick enough that he fell within the free 15 minute parking time frame.

Of course, my co-worker was very interested in the procedure and bombarded me with questions. Some I answered, some I was too loopy and would be in and out of a semi-sleep state. I believe, he related this behavior to others in my department, oh well! I arrived home, sometime before 1:00 p.m. I had some pain, more like bruising, on the ride home – the pillow helped with the bumps. My co-worker was impressed with what I had done and surprised me with cookies and tulips. I was somewhat energized. I walked to my apartment, going down some stairs, without issue. Walked around a bit showing my co-worker some things that I talked about at work, and then he was gone and I was resting.

I was online, doing some work from home that evening. I did rest, but I was also able to take care of the baby, placing him in his bed without issue at bedtime and picking him back up in the middle of the night without issue. I had taken some pain medication sometime during the day and before going to bed that evening, as a precaution or fear of that talked about severe pain. I did ice, but not as often as I was supposed to. I have to admit, it was uncomfortable to lie on my back, but mostly due to the diaper sized bandage across my hip bones. The following morning after the surgery, I didn’t take any pain medication in order to take the baby to daycare. I realized afterwards, I didn’t need it, but I did pick up some over the counter acetaminophen. I was online, working from home, thinking that I could’ve gone in to work today – in actuality, I couldn’t, there was still enough anesthesia in my system that I ended up taking a two hour nap in the middle of the day. Later that day, I removed the bandage. What was underneath was an incision over each hip bone of maybe half a centimeter in size and no visual signs of bruising. The worst part of the entire surgical experience, was trying to get the sticky bandage goo off of my bottom! As a precaution, I took the pain medication (for the last time) before going to sleep that night. On day two and three after the surgery, I was running errands, going to the mall, super active and busy. I had taken just two acetaminophen tablets for any pain I may have felt. Any pain felt was more like some bruising or how one would feel the day after a physical workout of ones gluteus, not the lower back pain I had been repeatedly warned about and far from the pain I had imagined. I was back to work on Monday, March 30th, just 4 days afterwards!

A hero? Really? Nah!
On March 31st, I went to pick up my mail at the UPS Store per usual. There was a slip stating there was a package, but I wasn’t expecting anything this time. It was from the Blood Center and I told the UPS store employee, “I got a present!” In it was a mug from the Blood Center emblazoned with “HERO” and filled with mint truffles. The note inside said it all,

“Dear 9-digit donor,
You made it, awesome! On behalf of the National Marrow Donor Program, the Blood Center and the marrow recipient, thank you for your generous donation of bone marrow.
Your courage and willingness to endure a rather uncomfortable procedure in the hope of saving the life of a stranger is truly remarkable.
We greatly appreciate your time, commitment and extra effort to make the donation transplant happen. You have not only given a second chance at life to the little patient, but also hope to his family and friends. You are a true HERO to us all.
It’s been a pleasure working with you. My best wishes to you for a speedy recovery.
Sincerely,
NMDP® representative”

The point of me sharing this story is that bone marrow donation is not as it is depicted on television series or as painful. The Dr. made mention during the pre-surgery appointment as to how the NMDP® wrote in to a few television series that showed bone marrow harvests without the donor being under anesthesia. In the real world, a Dr. would not do this. The fear is the drop in people willing to donate. Just think, I walked in to a bone marrow drive 15 years ago, at least 14 years before a patient even existed. What if, in the last 15 years, I needed this life saving transplant? Where would it have come from? Could one have been found? The patient that I matched hadn’t even been born yet! This life saving procedure is something that would only be an inconvenience, a bit of pain that is controlled, to the donor, but the rest of a life to the patient. I certainly am no hero. It is likely that your life hasn’t any or as many complications mine does, so maybe you’ll decide to not be a hero as well and donate in some way, anyway, to anything.

Paige here again: I commented on her FB note that I really couldn't agree that she's not a hero. :-D

Ultrasound

2010-10-01T18:12:00.001-07:00

Sorry! I know I was supposed to update this on Wednesday after the ultrasound, but we got back late and I was just too tired and have been busy since then.

So, to cut to the chase, looks like we're having another little boy! Ty and I are not entirely convinced from the ultrasound pic, but the doctor seemed pretty sure.

We think the "appendage" looks too large and could be the umbilical cord, but it's neither here nor there. Once the doctor saw it, we went ahead and did an amniocentesis, so we'll know 100% for sure in a few weeks. The amnio went fine (not exactly pleasant, but uncomplicated at least). The worst part was that we'd brought Ayden with us and they said it might upset him to watch the amnio performed so Ty had to leave the room while they did it. I was a little panicky and could have used his support, but we all survived anyways.

After that, we talked with the genetic counselor at the office and worked out our plan. By Thursday morning, the WONDERFUL doctors at Texas Children's had already contacted the lab in Cincinnati where the amnio will be sent and sent over Ayden's specific mutation to them so they won't have to sequence the entire gene. This will save us time and money since all they have to do is locate that exact exon instead of looking at the whole thing. The lab only wants cultured cells to work with, however, so it will take a couple of weeks to grow them in the lab here before they get sent off. Hopefully it won't take long after they receive it.

The funny thing is I'm not nearly as disappointed by the thought of having another boy as I thought I'd be. I thought I wanted a girl even apart from the concerns about WAS, but now that someone's said it's a boy, I find myself hoping that it is, but of course that he's perfectly healthy and WAS free. I always knew somehow that we'd get our little Caleb. :-D (We were torn between Caleb and Ayden when we were pregnant with Ayden, so we always said we'd use Caleb if we had another boy).

So, be praying that our little boy is perfectly healthy with no WAS to worry about. I'll be sure to update as soon as we get the results of the amnio!

Thanks and love you all!

15 weeks!

2010-09-23T16:22:00.000-07:00

Well, I've officially been out of the first trimester for a week and a half now. :-D Most symptoms have subsided, except for some continuing nausea, especially when I'm hungry, and a bit of fatigue. The best thing is that I'm feeling the baby move now! I know it's "early," but I felt Ayden at 16 weeks, so it makes sense. It's not consistent enough to start kick counts or anything yet, but it's sooo nice for me. I'm such a natural worrier, that it's nice to be able to feel the baby and know that everything is ok.

We went to the doctor on Monday and FINALLY heard the heartbeat for the first time! Always such a relief. Ayden seemed a little confused by the sound, and didn't seem to understand a bit when we told him that was his little brother or sister, but hey, we'll work on it. :-D

The official ultrasound is scheduled for next Wednesday, the 29th, at 1:40 PM. Hopefully they'll be able to tell the sex of the baby and that will determine whether or not we'll be doing an amniocentesis. Everyone pray for a girl!

Ayden managed to catch a virus this past week, and of course, I caught it from him. Fortunately, it wasn't a stomach bug. Just made us very congested and we ran a bit of fever. Ayden's temp got higher than mine did (101.7), so given his history, we took him into Texas Children's ER to make sure it wasn't anything BMT-related. They ran some blood tests and said his BANDS (neutraphils) were a little high which could possibly indicate some kind of bacterial infection, so they gave him an antibiotic just to be safe, but really felt pretty strongly that it was viral. They did a nasal wash to rule out flu, and that came back negative. As we're both pretty much over it now, other than some lingering congestion, I'm thinking they were probably right about the virus.

Anyways, that's what's up with us. I'll update on Wednesday and let you know if we found out the sex or not! I can't wait! Keep us in your prayers. Thank you all so much and we love you!

If you are a nurse...

2010-08-23T15:35:00.001-07:00

If you are a nurse, first off, I'd like to say that I can't express how much gratitude I feel towards those in your profession. Ayden, Ty, and I have dealt with our fair share of nurses and most of them have been stellar.

That said, please, please, please always check with the doctor if you have a question or think there may be an error with something the patient or patient's parent tells you.

Friday we went to Ayden's pediatrician to get his 2 year old check up and to continue his post-BMT shots. The doc did his examination and whatnot, then let the nurse know what shots Ayden needed based on the clearly printed schedule issued to us by the BMT unit at Texas Children's. When the nurse came in, she had only one shot when Ayden should have been receiving 2. I asked her about it and she said, "Oh, he's had all of those he needs until he's 4." I said, "Are you sure? Because it's here on his shot schedule." She said, "Oh yes, I'm positive," so we went ahead and just did the one shot. They also did the tuberculosis skin test, so I had to bring Ayden back in this morning (Monday) for them to check it. The more I thought about it over the weekend, the more I thought that the nurse had probably just looked at Ayden's shot record which records his shots both pre and post BMT. There are 4 openings for the particular shot he wasn't given Friday, and they were all full, but 3 of them were dated before his BMT, therefore they have no value since they were effectively wiped out.

I went back this morning so they could check the skin test and brought it up with the nurse, a different nurse than Friday. She was also convinced that he didn't need the shot, but unlike the nurse on Friday, she verified with the doctor who knows Ayden's situation personally. He, of course, authorized the shot. Then she came in with 2 shots when he'd only missed one on Friday, and that's how we discovered that the other nurse had also failed to record the shot she did give him on the record.

Everyone makes mistakes, and I totally understand that, but as nurses, you're dealing with people's lives and well-being. Nurses don't usually know every detail of a patient's situation like the doctors do. It gets to me when nurses make assumptions despite our questions and don't at least check with the doctor. Sometimes there are special cases, and Ayden is one such case. I definitely appreciate nurses who don't take things on faith just because I say that's how it should be because obviously, I'm not a medical professional and could be wrong, but not to check with the doctor seems irresponsible.

Anyways, of course, you hardly ever see notes written about the awesome nurses that people encounter because that's the level of service we expect, but we have had some amazing nurses too who have been extremely instrumental in Ayden's treatment and recovery, and I don't want to downplay them at all. I just hope the others will start following their example better.

New Baby Welborn

2010-08-17T05:57:00.000-07:00

Here is the first ultrasound picture of our beautiful new baby! :-D Turns out I'm actually 10 weeks and 2 days pregnant now instead of 9 weeks and 4 days. 5 days may not seem like much, but I'm totally psyched. That gets me 5 days closer to being out of the first trimester, 5 days closer to finding out if I'm having a boy or a girl, and 5 days closer to meeting our new baby!!! Getting out of the first trimester is a huge goal of mine since I have been MUCH sicker with this baby than I ever was with Ayden. It has not been particularly pleasant.

Everything looks great so far. We saw the little heartbeat and everything, so it's all on track. My doctor said that she'll send me for the official ultrasound at 16 weeks. That's a few weeks earlier than they usually do it, but she said they should be able to tell the gender by then. I did take an at-home gender prediction test this morning and it predicted a girl! So we're really hoping it's right. It's supposed to be 90% accurate, so it gives me more hope anyway. :-D

I did contact Dr. Candotti at NIH to get his recommendations. He said that unless we're considering experimental in utero treatment options for an affected boy (we're not; I'm not that brave), there's no point in doing an amniocentesis or CVS before we know the sex. If it turns out to be a boy, he suggested an amnio to determine whether he's affected with WAS. If so, he recommended that I have a c-section to prevent any severe bruising or hematoma. Also, he said that they can actually use the amniocentesis to do HLA typing and find a bone marrow match before the baby is even born. If the baby is an affected boy, we could feasibly start the BMT process as soon as he's born which is good since typically the results of the BMT are better the earlier you do it. Of course, I'm hoping all of this is a moot point because we're having a girl! :-D

Ayden's doing great. He's recovered from his circumcision perfectly and no longer glares at us all day (j/k). His new favorite past time is chasing the cat around until the cat is about to go crazy trying to find somewhere he can get some peace. What do you expect when you get a 2 year old a pet, though? Ayden is learning TONS of new words, and using them every day. My personal favorite is "Love you!" which he usually says after coming up to one of us for a kiss. :-D Makes my mommy heart melt no matter what else he's done that day. He's also apparently convinced that nothing should be left on tables, especially the coffee table in the living room. I had to velcro the table cloth down to it. Of course, now that's the only thing that stays on it. As a result, my house is consistently a wreck since I'm too sick and exhausted to do much about it at the moment. Again, I really want out of the first trimester.

Ty has just finished up teaching his first history class and by all accounts, did a great job. He's gearing up to teach his second history class, a couple of audio classes, continue with his department chair duties, and start his second semester of PhD classes next week. I have a feeling he's going to disappear. :-\ Hopefully he'll get through the PhD quickly, though, and we can have him back on a more regular basis. He's such an awesome daddy and husband, it makes it harder to be without him.

So that's what's going on in our lives. Thanks for your continued concern and prayers for Ayden and be praying for the new baby! We want a healthy pregnancy and a healthy baby at the end! :-D Love y'all!

Day +493

2010-08-01T06:01:00.000-07:00

Well, the biggest news about Ayden's health status is that he got circumcised on Friday. He's not really thrilled about that right now, but he's getting better gradually. The worst thing is having to put antibiotic ointment on the incision 4 times a day. After the surgery Friday morning, Ayden just sat on either Ty or me all day and we watched a bunch of Veggie Tales. Saturday, I thought we were going to do the same thing, but he had different plans. He got up and started running around. He's still not feeling top notch, but it's definitely improving. Hopefully he'll be all better in a few days.

A couple of weekends ago, we took him for his 2 year old pictures with our photographer friend Amy. The pictures turned out soooo cute! We did them at Sprinkles Yogurt in Clear Lake, and they are just awesome. Here's a few samples. And yes, we did shamelessly feed our 2 year old gummy bears in order to get these cute pictures. :-D

In other news, I'm now 7 weeks pregnant. I'm so ready to start working out. Ty and I just placed membership at Fitness Connection in Baytown, so I'm planning on getting started this morning. And of course, I'm having all kinds of fun with all the first trimester pregnancy symptoms. But, my next doctor's appointment is in 2 weeks and we'll get an ultrasound then, so I'm excited about that. :-D

So anyway, that's what's going on with us. Pray for Ayden's speedy recovery and for a healthy pregnancy! Thanks! Love you all!

2010-07-28T18:45:00.001-07:00

Go check out Ayden's 2 year old pictures! Amy (the photographer) set up this video montage of some of them for me!

Dove Better Than Ever Contest

2010-07-22T05:18:00.000-07:00

By the way, you can vote on that contest entry below at least once a day if not more. So feel free to vote again!

2010-07-20T19:22:00.001-07:00

Better Than Ever Contest

Sponsored by Dove gofresh

Go vote for Ayden! We'll win $1000 (medical bills) and a free spa day if he wins. :-D

Update!

2010-07-17T17:26:00.001-07:00

OK, so I had my first prenatal visit and turns out I'm 5 weeks along and the due date is March 18. My doctor suggested doing CVS (Chorionic Villus Sampling) and assured me that it only raises your chance of miscarriage by about 1/2 a percent. It would tell us as early as 11 or 12 weeks if we are having a boy or a girl and whether or not the X chromosome is affected with WAS. However, Ty and I just don't see the point of any unnecessary procedures, no matter how safe they are. No matter what the test said, it wouldn't change our decision to continue the pregnancy. Sure, it would be nice to know ahead of time, but it's not worth even 1/2 a percent more of risk to the baby.

We can find out between 16 and 20 weeks if it's a girl or a boy. After that, if it's a boy and if they can give us a reason why it would be medically better for the baby to do so, we might consider an amniocentesis to find out if he's affected with WAS or not. However, if they can't give us a good reason to do it, something that might keep him alive when he otherwise might have been in trouble, we won't do it at all. We can just have them run a platelet count after he's born and find out that way. If we do find out it's a boy, I think I will get in contact with Dr. Candotti at NIH and see if he thinks amnio would be beneficial or not. If he doesn't think there's any medical benefit for the baby, then we'll just wait and see. It's not like we don't know the risks.

So that's where things stand now! We're excitedly awaiting our new arrival! I can't wait to be out of the first trimester, partly because the risk of miscarriage drops so dramatically and partly because the first trimester sucks. :-D Keep us in your prayers, please!

Unexpected News!

2010-07-12T05:43:00.000-07:00

Well, despite my last post, and despite fastidiously using prevention methods, I'm pregnant! My best guess is that I'm about 3 weeks along, putting the due date sometime in late March next year. I don't have a real good idea since, like I said, we were actively preventing pregnancy, so I have no way of knowing exactly when that prevention failed. My first appointment is this Thursday morning, so maybe they'll be able to pinpoint the date of conception better then.

So, my guess is that we'll wait to find out whether the baby is a boy or a girl. If it's a girl, no worries. If it's a boy, at that point, they'll probably do an amniocentesis to determine whether or not he has WAS. If so, they'll probably do some more stringent fetal monitoring to make sure he makes it out of there safely. Since Ayden's platelets were already 31,000 the day he was born, we'll want to make sure we know how the baby is faring. I have no idea what that would mean as far as having a normal birth or a c-section or all of that.

Anyways, lots to think about. I'm just really hoping it's a girl, so we don't have to go through all the drama again. I'm going to try not to worry about it until we can find out more. There's no point in stressing when I can't do anything about it right now anyway. I just keep sending up prayers that it's a girl every time I think about it, which is a lot. I did pray for a girl a few weeks ago, but I was thinking more along the lines of adoption, and I didn't expect a response this quickly! :-D Should have known. Like a friend of mine always says, "If you're gonna pray for rain, you'd better bring an umbrella!"

A Little Bit of Sadness

2010-06-16T21:39:00.001-07:00

So here's a little bit of what's going on with us in the last couple of days. You may remember in previous posts me talking about us using sex selection to have our next child. Quick recap: Wiskott-Aldrich Syndrome only affects boys symptomatically, so having a girl would ensure not having to put another kid through a bone marrow transplant or the constant struggle of living with low platelets and possible immune deficiencies. We were told that sex selection was done with the sperm, running them through a machine and using artificial insemination to only put the ones with X chromosomes in to potentially become a baby. We decided to start the process this summer. We figured there might be a battle with insurance and a good possibility that they wouldn't cover it anyway, so we wanted to find out how much it is out of pocket and get the details on it. So, we went to the Houston Fertility Institute on Tuesday for a consultation.

The problem cropped up right after the hellos. The doctor started talking about IVF (in vitro fertilization) in which eggs are taken out of the female, fertilized, and reinserted. The goal in our case would be to weed out those affected with WAS and possibly all male embryos. So, I interrupted and told the doctor we were under the impression that sex selection didn't involve in vitro, only artificial insemination. He said that there is a process to do that, but we'd have to travel to Norfolk, VA where they would run the sperm through the machine, but then they'd have to freeze it and send it back to Houston. He said between the initial run through the machine, the freezing process, then the unthawing process, you've lost a lot of viable sperm, so the success rate of achieving pregnancy is not very high with this method. PLUS, there's still a 20% chance of getting pregnant with the other sex because the machines can't keep a little of the other sex from trickling through. From the sound of it, it's just really not a viable option.

So, that only leaves in vitro. Ty and I had already talked about it, but we discussed it again and we know that we just can't do that. With IVF, there are always embryos left over. In our case, it would be all the male embryos and any affected with WAS, possibly as many as 14 or 15 total. Those affected with WAS would either be donated to research or discarded, and the others would be frozen to await a time when we might want another child, or decided to donate or discard them. None of these options are ok with us.

I'm not trying to get into politics or even morals here at all; this is strictly on a personal level. To me, and to Ty as well, once that egg is fertilized, it's my child. Once those few cells have the potential to grow into a baby, it is my baby. I couldn't discard those embryos or donate them to another couple or to research any more than I could donate or discard Ayden. Even thinking about it is painful.

So, that leaves us with only 3 options. 1) Don't have any more children, 2) try naturally and hope for the best, or 3) adoption.

#1 is a valid option. We have one healthy, happy, beautiful baby boy against all odds and only by the amazing grace of God. Any time I need proof that God is here and that He loves us, I need only look at Ayden and think of all we've been through for him to be here and healthy. However, for some reason I can't really explain, I just don't feel that our family is complete. It's not that Ayden is not enough, it's just this nagging feeling that someone is missing. It's not really rational, but it's there. I want another baby, preferably a girl.

So, then there's #2. #2 is really not a good option for us. I'd like to think that God would spare us all this drama and heartache and risk again, but I personally know of at least 4 families with two or more boys affected with WAS, most of them having put both or all of the boys through BMTs. And I just keep thinking, "Ok, it's 75% odds that we'd have a non-symptomatic child (a carrier girl, an unaffected girl, or an unaffected boy), but what if we didn't? What if we had another boy with WAS? What if he didn't make it?" I can't be the one responsible for that. Other people have done it and I mean them no disrespect, but for us personally, we just can't put our families, ourselves, and our children through that again knowingly. And there's no guarantee the transplant, if it were necessary, would go as smoothly the next time. There's a very real chance that we could lose a child to WAS or to a BMT. Having come close enough to losing Ayden to know a taste of what terror and despair feel like, I just can't make that choice. I just can't take the chance. If something were to happen, I couldn't face myself knowing that I knew it was a possibility.

Now, I'm totally fine about #3. I think it would be great to adopt. I'm just nervous about it because I've heard so many horror stories about the process. We don't have a lot of money saved up to cover someone else's medical bills or to pay an agency or lawyers. We're going to look into it further. In the meantime, if you come across any pregnant girls who want to give the baby up for adoption, let us know. ;-)

So, what it comes down to is that we won't have another child unless we're able to adopt or God does some immaculate stuff and gets around birth control, which is totally within His power, I know. We're at the point where there's really nothing we can do to make it happen. If God agrees with us that our family is not complete with just the 3 of us, He'll have to move to make it happen. I have to admit, I really envy all of you who can just say, you know, I think I'd like to have baby and just start trying right then. I'm working on acceptance and trust, and I'm guessing that's part of what this trial is for. I'm leaning on God an awful lot saying, "It's in Your hands, Lord. Your will be done."

Day +422

2010-05-22T04:40:00.001-07:00

Well, it's been over a month since I updated. Things have been fairly tame around here. Ayden did start his post-transplant vaccinations. Yay! He's not exactly pleased about it, but I'm psyched that he's finally getting to do it. He got his first round in April and his second round yesterday. He does cry and throw a fit, but he recovers fairly quickly. He was pretty pooped yesterday after his shots, though. At his pediatrician's appointment, we found out that he's in the 75th percentile for his height! 55th or something for his weight. But this boy is TALL! lol. It's also been decided that he looks like Ty. Like, exactly like Ty. Ty's aunt Glenda sent us some pictures of Ty when he was Ayden's age and the resemblance is amazing! :-D

He has been fairly traumatized by having to get an IV to draw his labs since the port has been taken out. It doesn't help that the nurse at the BMT unit who gives him the IV isn't exactly great at it. Last time, we had to go downstairs to the pathology lab and a nurse there got the IV in on the first stick without even moving the needle around. Anyways, long story short, as far as all the BMT stuff goes, Ayden's doing great! No problems at all.

Tuesday morning, we got Ayden's breakfast ready and he took a few bites and promptly threw up. Fortunately, that was the morning of his BMT clinic appointment. He and I got almost all the way to the hospital when he threw up in the car. Fortunately I had another shirt, so I got him out, changed his shirt, wiped him off as best I could, and we made it to the clinic. We were put in isolation, of course, so he wouldn't infect the other kids. He threw up on me two more times while we were in the room. His nurse practitioner saw him and said she didn't think it was anything serious. Ty and I are typical BMT parents. Our first thought when he threw up was "Gut GVHD!!!" Thankfully, no. It's hard to remember that kids get sick on a normal basis too, just from coming in contact with germs and not necessarily from life-saving/threatening procedures. On the plus side, since he threw up on his clothes in the clinic, one of the PCAs got him the cutest scrubs ever! lol. Well, they're cute because they're little, but they're still cute! To add further proof that Ayden's illness was just a stomach bug, I caught it. I spent the entire night Wednesday with the toilet bowl. No sleep at all. That really stunk. We're all doing better now, though.

So other than doctors appointments and annoying illnesses, we've been having a lot of fun since the last time I wrote. At the end of last month, we went with my sister-in-law, her 6 kiddos, our friend Elanor and her 4 grandkids to the Blue Bell Creamery in Brenham and then had a picnic lunch and did a little exploring at Washington-on-the-Brazos State Park. We had a great time! Ayden loved the ice cream factory and playing with his cousins and new friends. We cut out a little early on the exploring since it was starting to get late and it's a 2 hour drive back home from Brenham.

We did get to play a few games from an earlier era and help "wash the laundry" by hand. And I took a couple of very pretty pictures of the state flower of Texas, the bluebonnet.

We got the go-ahead from the BMT clinic to start regularly attending church and to send Ayden to class with other kids. So, we started going to Lakewood Church of Christ (NOT Lakewood of Joel Osteen fame) here in Baytown. My brother and family and my mom go there, so it's great to go with the family. Ayden went to class for the first time, and we found out that, at least sometimes, class consists of him and his youngest cousin Kathryn. lol. He loved it, though. When we came to get him, Mrs. Bonnie said he'd definitely contributed to the singing and had a great time. He didn't want us to take him out of the nursery either. He'll probably get to visit again on a regular basis. :-D It's been great to be back in church and attending a small group again. It's been far too long.

Ayden's very clearly begun "pretend play." He lets his stuffed animals drink from his milk cup, talks to them, and all kinds of stuff. Perhaps the cutest pretend game is what we call the "Bye" game. He picks up anything he can find with a handle, comes up to whichever one of us he's playing with, holds out his little face for a kiss, then says, "Bye!" and some variation of "Love you!" (that part's not very clear. We're just guessing that's what he's saying because it's what we always say) and walks to the door. Then he'll repeat the whole process until he gets tired. The first time he did it, I thought I would die of a cuteness overdose.

So that's about it here. Thank you all for your continued encouragement and support! We love you all!

Day +382 - Goodbye Portacath!!!

2010-04-12T17:30:00.000-07:00

Today is exactly one year since the day Ayden engrafted (his new bone marrow started working). Today we went to the day surgery office of the hospital and had his portacath removed. It was located slightly under his left nipple, completely under the skin. The doctor just recut over the scar he had from when it was inserted, so no new scars! :-D

Ayden did really well. I couldn't feed him anything past midnight last night, and he couldn't have anything to drink (clear fluids) after 6:00 AM. So, I woke him up at 5:30 and got him to drink the last bits of water he could have for a few hours. The surgery was scheduled at 9:30, and we had to check in by 7:30.

My mom came with us, thank goodness. Ty couldn't make it because he couldn't afford to miss the class he teaches on Monday morning again. There really wasn't much to it. We got there, they got his vitals and background info, we went into the holding room, Ayden played, the anesthesiologists came and talked to us, then the doctor came and talked to us, then they took him back with them. He didn't realize that Mom and I weren't coming with him, so he didn't cry going back. What happened after that, I'm probably glad I don't know. :-D Before he went back, we did meet the couple sitting next to us. The man was a former Harlem Globetrotter. How cool is that?!?! And he had the cutest little boy! Of course, I'm a total MORON and forgot to get his name, but oh well. Anyways, after he went back, we went back to the waiting room, and they called us about 45 minutes later, all done. We just waited for him to wake up from the sedation, which didn't take long, then he was in a really bad mood and kept holding his hand that had the IV in it out for someone to remove. He promptly kicked off his blood pressure cuff, started tearing off all his probes, and kicked off the pulse ox meter. Took him a while to calm down enough to drink some water, but we were out of there on the way home within about an hour and a half of when we handed him over.

Of course, I'm making it sound all easy and like I was cool as a cucumber. And I didn't freak out outwardly. But it goes against every one of your maternal instincts to hand your child over to people you've never met when you know that they're going to do things to him that will scare him (i.e. put a mask of laffy gas on him and hold him down until he falls asleep), and then cut his chest open. Your mind goes over all the possible complications that could happen, even though the chances are so small, they're hardly worth even mentioning. No matter how much you've been through with your child, no matter how much more dangerous a bone marrow transplant is than a simple 45 minute surgery to remove a portacath, it just doesn't feel right. So yeah, that sucks, and I'm really really really glad that I don't have to deal with that again, at least not because of Wiskott-Aldrich Syndrome.

He's been alternately playful and really fussy the rest of the day, and took an additional hour long nap. We took him to his favorite restaurant to celebrate, but he was in no mood, so he didn't eat much, but he did go down to bed really easily, with no complaints. Hopefully tomorrow he'll be feeling better.

The cool thing is, he doesn't even have stitches. They just put some waterproof glue over the incision, and said it will flake off a little at a time, but we can bathe him and everything. So that definitely makes our lives easier.

Our next appointment at the BMT clinic is next Tuesday when we'll find out the results of all Ayden's organ function tests and the test to see how his body responded to a "test" vaccine. If all's well, and I have no reason to think it's not, he'll start his vaccinations that day. Once we're done with those, it's just a few checkups! I believe they said it would be 3 check ups for the following year, 2 the next, and after that, just an annual check up.

I am so psyched that we are almost completely through the process. We have been soooooo incredibly blessed throughout this whole hellish ordeal. This is NOT the typical transplant experience, so I am so grateful to God that things have gone the way they did. I know I've said it before, but thanks again to everyone for all your support and love. It would have been so hard to make it through this without you.

Love you all!

Year +1!!!!! (Day +365)

2010-03-26T05:45:00.000-07:00

I can't believe that a year ago today we had been stuck in a hospital room for 10 days and were waiting impatiently for that little bag of bone marrow that would save our son's life. I commented to my dad the other day that if Ayden were the only person you'd ever known who'd gone through a bone marrow transplant, you'd think that it's really not THAT big a deal. Inconvenient, but not that scary. Ayden has flown through this past year with (very relative) ease, giving us more trouble from just being a typical toddler than from complications with his BMT. Unfortunately, it's not like that for everyone. Please keep in your prayers Jacob, Max, and Kyler who are all in the hospital now having very recently received their BMTs, none of whom are complication free at this point, Noah who's back in the hospital after his BMT with complications, and David who's over 3 years post-BMT, but dealing with chronic skin GVHD (Graft versus Host Disease).

Ayden engrafted (his new bone marrow started working) on Easter last year, something I just felt in my heart would happen. God has been watching out for this little boy since before he was born and, while it could just be a coincidence, I took his engrafting on Easter as a sign that everything would be ok -- God had a special eye on him. Then he was +100 post transplant (the day he could again go out into the world, a.k.a. grocery store with me) on July 4th, Independence Day! :-D The English major in me appreciated the symbolism.

Tuesday we went for his clinic visit and to start the tests they do at one year post. He was scheduled for a sedated echocardiogram (ultrasound of the heart), so I had to wake him up at 4:45 to get him to eat the last bit of food and drink the last of the milk he could have until it was over, then he could only have juice or water until 7. After that, nothing. So he was exhausted and hungry when we got there, just like they'd said he should be. Then the technician said that she'd like to try it without the sedation because it would only take 10 or 15 minutes, and if we did the sedation, it would be a 2 to 3 hour process. So we gave it a shot, and he did great! The technician put on the Wiggles for him after I told her that he only liked Hairspray. She said they'd be the closest thing. lol. He seemed ok with them as long as they were singing. I don't think I'll be buying any of their DVDs, though. There's just something wrong with grown men singing those kinds of songs and dancing that way. So, I was a little perturbed that I'd gotten him all tired and hungry for nothing, but glad that we got done so soon and he was able to eat and drink again. They also did a standard EKG, then we went for a chest x-ray and bone age scan. Ayden was NOT pleased with either of those. Then we went to Chipotle for lunch and Ayden fell asleep in his stroller, so we just headed home.

Yesterday, we had a bit more excitement. I came out of the bathroom and found him with some small, ball-shaped magnets in his hands and one in his mouth. Most of them are too high on the fridge for him to reach, but the little magnetic pen caddy I have on the fridge too had slid down and it had several of them on it. They had been in the shape of a smiley face, so I tried to recreate the smiley face with the ones I'd found. Three were missing. So, long story short, I called the BMT unit and they said to bring him in immediately. He got ANOTHER chest x-ray and an abdominal x-ray, but neither of them showed anything. His doctor at the BMT unit said she wasn't positive they would show up on the x-rays because the actual magnets are pretty small; the bulk of the thing is plastic, but she conferred with a doctor she likes in the ER and he said he thought they would be visible. So we were sent home with instructions to watch him and bring him back if anything weird happens.

When we got home, I got down on hands and knees and started looking between the fridge and the counter next to it where the pen caddy had been, and found 2 more magnets, so I'm hoping that if he did swallow any, it was just one. What you don't want is for the magnets to connect inside the intestines. So that was a fun day. He seems fine though, except for a resurgence last night of the cough he had last week. He woke up enough at one point with it that we were able to give him some Robitussin, and it quieted down after that.

So the next steps -- next Tuesday, Ayden will get his one year post GFR (kidney function test). After that's done, we'll schedule to get his portacath removed. He'll start his vaccinations next month. This next year, other than vaccinations, he'll go in for a check up about 3 times, 2 times the next year, and after that, it'll just be a yearly check up for I'm not sure how long. I assume we'll get the results of all the organ function tests at our next office visit next month, so I'll let you know. I don't anticipate any complications, though.

Anyways, we're overjoyed that we're at a year post-transplant and wish we had ANY money to go celebrate. Lol! We'll celebrate after payday, though. Or maybe we'll just celebrate by having a normal, uneventful day at home, remembering the kind of day we were having one year ago, and praising God that we will never have to go through that again. That sounds good to me.

I want to say a quick thanks to several people for all the support and love they've given over the past year. First, to our families -- y'all have been absolutely amazing. I don't know how we would have made it without your help. Y'all kept Ayden when I couldn't take him with me, letting me get out of the hospital room, little tiny trailer in Pearland, or even home when I felt like I was going to go stir-crazy. And you just offered emotional support in what was hands-down the most turbulent year of our lives. Also, to all of our friends that we've "met" because of Wiskott-Aldrich Syndrome -- Bob, Sumathi and family, Aimee, Lanta, Kami, Robin, Bee, Debbie, Jill and many others who I can't think of off the top of my head, thank you so so so much for all of your support and encouragement. It has been so nice to have a group of people who understand exactly what I'm talking about when I start using all the medical jargon we know so well. And it was great on those really hard days to look back at some of your blogs and know that what was going on was ok, or at least normal at that stage.

I'm hoping that we'll be able to swing it financially to go to the conference this summer and meet many of you that we haven't gotten to yet. The registration fee is a great deal, but the trip up there gets kinda pricey. And finally, to our "normal" friends -- thank you for just being there and caring what was going on. It was always so nice to get on Facebook and see how many people were praying and rooting for Ayden through this entire year. Your response and concern and love through all of Ayden's problems from the time he was born have proven to me how many amazing and wonderful people I have the privilege to know.

We love you all!

Day +334

2010-02-23T19:57:00.000-08:00

One month to go and we'll be at a year post-BMT! I'm so excited! Ayden had his monthly clinic visit today and all his counts look great. Everyone agrees that he looks wonderful and that he's growing much too fast. :-D Today, he got a test dose of the tetanus vaccine. Next month, they'll see how he's responding to it, and if there are no problems, we'll start the clinic's vaccination schedule to get him up to date on all his vaccines. His nurse practitioner also said that they'd be getting in touch with me to set up all his annual mark organ function tests. I was thrilled today that his port still seems to be working fine, relatively speaking anyway. I had to tickle the heck out of him to get him laughing and squirming for them to be able to draw blood from it, but it's better than the way it usually works out--crying. If it'll just last through next month after the organ function tests, I'll be a happy camper. After those, they'll take it right out, and Ayden won't have any foreign objects in his body anymore! Yay! He's only on two medications right now--Bactrim (antibiotic to prevent infection) and Leukovorin Calcium (folic acid to help his hemoglobin counts), and they said that we can just finish up what we have and then not worry about them anymore. So very very very soon, we are looking at having a completely normal little boy! :-D

The NP said that after all his vaccinations are done, for the first year, we'll probably come in once every three months. The next year will be every 6 months, and after that, we'll just go in once a year for a check up. It's obvious that Ayden is already forgetting all the things he has gone through. He threw a little fit today when we were trying to get his blood pressure, temperature, height, and weight and he doesn't sit still for me when I put his cream over his port now either. He used to just take all of these things in stride unless he was in a particularly bad mood. Now, they are so foreign, only done once a month, that he doesn't handle it as well. This development is good and bad. Of course, we don't really condone fit-throwing, uncooperative behavior in any circumstances, but I am immensely relieved that he won't remember a thing about this whole experience, even things like getting his blood pressure and temperature taken, which happened really often there for a while.

So, other than all that, we've just been going about life normally. Ty and I celebrated our first wedding anniversary on the 14th. Yeah, I know it's corny to get married on Valentine's Day, but it was LITERALLY the only convenient day for everyone involved. I wish I could say that this first year of marriage to Ty has been the best year of my life, but that would be an outright lie considering all we've been through with Ayden. However, through all of it, Ty's been right there holding my hand, holding me when I cried, supporting us in every way imaginable, being an amazing daddy to Ayden, and fighting right by my side without fail. I am so incredibly grateful that I get to share my life with him, that I get to be his wife, and watch him be Ayden's daddy too. I am very much looking forward to future years with him--hopefully still eventful years, just eventful in less stressful ways. :-D

Ayden has added a few words to his vocabulary lately, including "uh oh!" It's so cute! He also mimicked Ty while they were playing hide and seek. Ty said, "Where's Ayden?" and Ayden popped his head around a corner. Ty said, "There you are!" and Ayden replied, "Theh-ooo-aah!" So that's significant. To a proud mama anyways.

So, that's about it from our neck of the woods. Oh! I highly recommend the book Eat, Pray, Love to one and all. :-D Probably no one will agree with ALL of it (I sure didn't!), but it's really incredible. We'll keep everyone updated as we get closer and closer to that one year mark! Thank you all so much for your prayers, love, and support. We know that a miracle has been given to us in the form of Ayden's relatively easy recovery from a very dangerous procedure. We couldn't have dreamed of better results. So thank you so much to those of you who have been praying for him all this time. God is truly a great God and He's brought us so far this year.

Love you all!

Day +299

2010-01-26T06:01:00.000-08:00

Well, I haven't updated lately because, mercifully, nothing's been going on with Ayden medically! :-D He had an appointment at the BMT clinic last Tuesday and everything looks great! His counts are all steady and he's not having any problems at all. They talked about scheduling surgery to remove the port in his chest, but his nurse practitioner said she thought it would be better to leave it in until he's a year post-BMT because at that time they'll have to do a lot of bloodwork and he'd have to get an IV if we removed the port. At a year post, he'll repeat most of the organ function tests he did prior to transplant to make sure everything's working properly. After that, we'll have the port removed. He'll also start his infant vaccines again at that point, but it won't take as long as it does for babies. Sumeeya (NP) said they usually go on a month or every other month system with those instead of 3 or 4 months in between. I'm sure he'll get a hearty dislike for going to the doctor during those months. :-/

We had a great treat at the end of December. Our friend Sumathi and her family came down to Houston and we got to have lunch with them and meet them in person for the first time. Sumathi is mom to Amal who is 11 years old and has Wiskott-Aldrich Syndrome, and has never had a BMT. He has a much milder form of the disease than Ayden did; consistent low platelets, but not as low as Ayden's were, and not so much of the immune deficiencies. I'd been communicating with Sumathi online for probably over a year, but had never actually met her, so it was great to get to see them! Sumathi and other WAS moms have been some of my best support throughout this past year. They are the only people besides doctors Ty and I can talk to who understand the terminology and who we don't have to explain every little detail to. Of course, the support of our families and other friends is invaluable to us and we appreciate it more than we can say, but it is refreshing to have some people who know our situation perfectly and who can offer advice and support from an empathetic point of view. The WAS family is very small, but it doesn't seem like it to us sometimes because of all the wonderful WAS families who have unswervingly upheld us and suffered and rejoiced with us through Ayden's treatment and recovery.

Otherwise, everything's been going great! Ayden's getting more and more teeth in, finally cutting some molars. He's a very adventurous eater, willing to try anything we push at him. He LOVES any Asian food at all, which works out since both his parents are huge fans. He's saying more words now, even if he doesn't exactly grasp the meaning. He can say tree, cold, cool, hot, car, shoes, mama, dada, bye bye, cat, bite, pop (referring to his Magic Pop snacks from Central Market) and I'm pretty sure he goes around saying "Goodness!" like I do. I'm sure I'm missing a few words, but oh well. He's become very proficient at holding my hand and walking with me when we need to. A few months ago, if I tried to hold his hand, it turned into a huge public display of Look at the Mean Mommy Dragging the Screaming Kid Around, and I'm sure more than one person looked at us and wondered if I was stealing someone else's kid. ;-) But those days are past, thankfully.

So we're just getting into the post-Christmas swing of things. Ty's back at work and just started his first semester as a PhD student, so it's just Ayden and me during the days again. I moved his nap time to 12:30 and now, he's routinely taking 1 1/2 to 2 hour naps! It's wonderful!!! :-D I'm helping out with press releases for Lee College now on top of my regular copy-editing, so that's getting me a few more hours each month.

So that's about it for our lives. Thank you all again so much for your continued support and love. Keep praying that everything continues to go as smoothly as it has so far! Love y'all!

Day +266 - Christmas Eve!

2009-12-24T03:04:00.000-08:00

Well, Ayden's been continuing to do great this month. Still no problems except those of any normal 17 month old. :-D His last appointment was on the 15th and all his blood counts looked just fine. He received his second round of flu and H1N1 vaccines, so he was NOT thrilled with everyone, but at least it's over and he doesn't need more of those for a year. In four days, we'll only be 3 months from that one year post transplant date, so we're very excited about that! That's when he'll start getting his regular baby vaccinations again, and we'll start looking at circumcision (ok, not really looking forward to that, but it'll be great once it's done and healed). His portacath was actually a little difficult to access this time. We had to all but jiggle him up and down to get the blood to flow, so if that continues, that may come out before too long. I wish it wouldn't, because it's not painful for him when they take blood that way. I'd rather keep it until we're not coming in once a month anymore, but we'll see. He is FINALLY drinking his milk, so he's off baby food! And he drinks more milk than he ever drank water. I've never seen so many full, wet diapers! Plus, he's decided he also likes sweet stuff now, so we've begun the battle of continuing to introduce him to new good stuff (veggies, etc.) while letting him branch into the sweet world just a little.

My grandmother, Nanno, passed away on the 4th at 91 years old, so that was sad of course. We will miss her a great deal, and I wish Ayden could have known her better. He hadn't gotten to see her at all past March because of the transplant. We couldn't take him into the nursing home she was living in, etc., for fear of him catching something. This picture is from last Thanksgiving. She was a wonderful, wonderful lady and I hope I can be the kind of mother, grandmother, and friend she was to all of us.

So other than that, we've been getting ready for Christmas. I actually managed not to wait until the last minute this year, so that was nice. We took pictures with my friend Amy and got some really good ones despite Ayden's not-so-happy attitude that day which proves that Amy is a genius. :-D Ayden and I also got to have lunch with my friends from high school Chelsea (and her twin 4 month olds), Tera, and Chris, and Chris's little sister last week, so that was a blast. It was great to see them all again. Tera is a doctoral student in the archaeology department at Cambridge (yeah, the one in England), so I only get to see her when she's stateside. And I hadn't seen Chris is FOREVER before that.

I've been helping out at the store my brother works at in Houston, Wild Birds Unlimited since the 17th. It's been pretty fun, but my legs and feet are TIRED every day after work. You barely sit down while working there. And of course, I'm sure I spend more than I make. I've managed to keep it under control this year, but I've still bought a new crook arm for my pole system, two kinds of seed, suet, a hanger for the new seed cylinders, a seed cylinder, and a new window feeder. My birds are happy and I've got some of the migrating American Goldfinches at my thistle sock now, so it's nice to look out my kitchen window and watch them all. Today will be my last day working there and then it's back to just being wife and mommy! Yay! :-D

We got the bad news yesterday that my great uncle has shingles. We go every year to their house for Christmas Eve to see that side of my family. It's my mom's aunt and uncle, their four kids, and their many children and they're pretty much all in one house only once a year. My cousin decided to host it, but even with that, Ayden's BMT doctor said that "no one who's been exposed should expose Ayden." So, taken to its logical conclusion, not only can we not go this year because Aunt Dean who's been taking care of Uncle Billy Ray (yes, I'm that hick) will be there, but if any of the rest of my family (brother, sister, mom, or aunt) go, we also can't participate in anything with them on Christmas. So, I was briefly resigned to miss out on everything this year, and very disappointed, but of course, willing to make the sacrifice for Ayden's health. But then I talked to my mom, and she said, "OK, that's all I needed to know. I'll call Aunt Dean and tell her none of us can make it this year." I protested that we shouldn't inconvenience everyone, but she wouldn't hear of it. I can't tell you how touched I was that my whole family would make that sacrifice for Ayden to be included Christmas day. I was trying not to show too much emotion because my brother was there (this was all at the store) and he's NOTORIOUS for making fun of me for stuff, but I felt close to tears with gratitude to all of them. I'll have to try not to cry when I tell them how much I appreciate it on Christmas day. I feel sorry for people whose families are not as awesome as mine. We have our ups and downs and fight like any other family does, but when it comes down to it, I know we'll always be there for each other. And to his credit, Paul wasn't mean about the whole situation either. Hee hee hee.

Anyways, I hope everyone has a wonderful Christmas and that Santa is very kind to you! Or that you have a Happy Hanukkah or Kwanzaa or whichever you celebrate. We're looking forward to sharing 2010 with you with Ayden a healthy, happy, normal little boy!

Day +240

2009-11-28T05:12:00.000-08:00

Well, we hope everyone had a great Thanksgiving! Ours was good, but quieter than usual. Sunday, we were with my mom and step dad and those sides of the family. Thursday, we planned to head up to Killeen to be with Ty's family, but his mom called and let us know that they'd all gotten sick, so instead we ended up having a "picnic" (Jack in the Box) lunch at McLeod Park in Mont Belvieu. Ayden had a blast, though, so it was cool. He insisted on running around on the grass and pointing out every flower he saw. There were a bunch of those little white weedy flowers, so that took a while. He still does not understand the lure of playground equipment, but I'm confident he'll overcome that in the coming years. :-D Last night we went to my dad's house. Unfortunately, my grandmother wasn't doing so hot, so she didn't get to come and my aunt and cousins went to be with her. It ended up just being my dad and step mom and my brother and his family. Still fun, though. Ayden LOVES being around his 6 cousins, and Dad has a cat and a dog, so he had a great time. Wish everyone else could have been there, though! I was so looking forward to Ayden getting to see Nanno since I can't take him to the home she's in until he's revaccinated.

Ayden's last doctor's appointment was last week on the 17th and everything is still looking excellent. His rash is becoming a little more persistent, but they still say it doesn't look like GVHD. Of course, every time I take him to dermatology, it's all cleared up, so they can never help much. The coolest thing about his last appointment was that he was able to get his seasonal flu and H1N1 shots. I didn't know he'd be able to get those until after he'd been revaccinated, but they said it was fine. He'll get a second dose when we go in next month too. I've always worried about the flu, of course, but it's hard to just stop life completely and hunker down at home, especially while Ty was working so much on his thesis, and not as available to watch Ayden while I went to the store or something like he was when we first got out of the hospital. So, I was glad when the doctor said he could get those vaccines. It was funny how anxious I got, though. You'd think with the BMT and all the preceding and follow-up stuff, nothing would get to me anymore, but he hadn't had any shots since he was 6 months old and nothing else physically hurt him while it was happening (obviously the side effects of the chemo weren't great, but he didn't have needles poking him painfully or anything). I haven't had to see him scared because of pain in a long time. He actually handled it really well, just a few squeals, then he was in a good mood again. I was very glad. Ty's going to try to come with me for the follow-up shots. :-/

Other than all that, Ty FINALLY handed in the final draft of his masters thesis. His oral defense is next week, but after that and any revisions they want him to make, it's all over! It's been great to actually get to spend the last two days with him. Ayden's been loving it!

I've become obsessed with the Twilight series, finally. I've read each book in under 24 hours, and have one more to read. Once I get done with that one, I'm hoping I can resume my normal life.

Ayden can now say "Mama," "Dada," "hot," "yeah," "no," "bye," and my mom swears he says "Grumps" (my step dad's grandpa name). Personally I think she's just confusing one of his normal sounds with that because otherwise he thinks about Grumps A LOT. Seems a little unlikely, even though he does love Grumps.

Right now, he's very upset, serving his second sentence of the morning in time out for disobedience. I think this is the first time he's ever actually been a little upset in time out. Before, he just thought it was funny that he was in the play pen. Crazy kid.

Anyways, so things are going really well. We're just having fun being a family and are so thankful that Ayden's health is doing so great! Keep praying that trend continues!

Love y'all!

Operation Christmas Child

2009-11-14T05:11:00.001-08:00

Hey everyone!

Next week is National Collection Week for Operation Christmas Child. It's very cool and very easy. You just pack a shoebox (or as many as you want) for a child(ren) who doesn't normally get a Christmas. You choose boy or girl, 2-4, 5-9, or 10-14 years old. There are collection sites all over the country. Just go to the Samaritan's Purse website for more information and to find a drop off location near you. Ayden and I got our two boxes packed, so we'll be ready to drop off on Monday! :-D

Day +220

2009-11-07T19:16:00.000-08:00

Well, things have been pretty good around here. Our last clinic visit was on October 27. All Ayden's counts look GREAT! His hemoglobin continues to climb, his platelets were 247K, I believe, and everything else looks just peachy! We don't have to return for a whole month! :-D The picture is him in the BMT waiting room playing with his "friend" Maximo. Very possibly the sweetest 17 year old guy ever. He never complains when Ayden comes up to play with him, and he's always very gentle and sweet with him. We just love him!

Ayden continues to amaze and frustrate us daily. He has learned to climb onto the couch, thus filling my day with terror and near-heart attacks. He did take a few tumbles before he learned the correct way to get back down. He took one particularly spectacular fall as he reached over the arm of the couch trying to play with his musical table which was sitting directly below. The musical table was there because Ayden is A.L.W.A.Y.S. trying to play with the power strip which is "hidden" under the couch. So, I moved the musical table toy there to distract him from getting to it. It's now moved back to its original spot after it caused a complete head-over-heels somersault onto the floor.

We had fun on Halloween, though we didn't do too much. What with swine flu and regular flu and all that stuff going around, I figured we'd probably be wise to avoid big crowds of germy kids running around after candy. He can't even eat candy yet anyways. And he can't say "trick or treat." Geez, he barely says "Mama." But what we did do is go have lunch with our friends Rick and Sheila and their daughter Isabella at the Spaghetti Western in Houston. We haven't seen Rick since Ayden was 6 months old, and we haven't seen Sheila and Isabella since I was pregnant, so that was a real treat. And Ayden proudly wore his Superman costume all day long. Even in Central Market after lunch.

I also discovered something very interesting the other day. We've been fighting for months now to get Ayden to drink some kind of milk. I settled on trying Silk Very Vanilla Soymilk because it has the most calories per 8 oz. Well, Ayden wasn't having it. We tried plain soymilk too, rice milk, goats milk, even hemp milk (don't ask me), and he would just take a little sip, then put the sippy cup down and not pick it up again unless you could prove to him that it contained water, not milk (well, all except the hemp milk. That one he made a really bad face, threw the sippy cup, and looked at me like "Are you insane???"). So, the other day, I got some little juice box sized containers of the Very Vanilla soymilk that have little straws attached to them. I stuck my finger on top of the straw and let Ayden watch me drop it into my mouth and drink it. Then I tried him. He opened his mouth and took a big swallow. No problem. Not a flinch. Then it hit me--it's not that he doesn't like the milk, it's that he doesn't like it in his sippy cup. Because he is S.T.U.B.B.O.R.N. I can give it to him with the straw all day long, but how dare I put it in his sippy cup?!?!?!?!?!?!? Yep, that's my kid. So we're still working on that.

Despite these frustrations, I find myself hopelessly in love with this little (S.T.U.B.B.O.R.N.) ball of energy. Having a child with a rare illness and who's treatment is really only slightly less risky (in our case; in some cases, the BMT is way more risky) than that illness forces you to live with a constant daily awareness that anything can happen, and tomorrow, that precious baby may not be here anymore. That kind of constant reminder can do a couple of things to you.

1) It can make you love your child with a completely reckless abandon and appreciate your child far more than it seems some parents do, and 2) it can cause you to unconsciously try to protect your heart and try NOT to feel that intense, almost debilitating love for that child. In my experience, I've wavered between the two. But I've read a couple of books by a woman named Alice J. Wisler. They're just Christian fiction novels, nothing particularly special, except that she lost one of her 4 children at some point. I don't know how or why. And while her books aren't about that experience, it does show up in her writing. And somehow that opened in me the oh so simple truth that, yes, I only have today. I have today with Ayden and Ty and everyone else I love, and I don't necessarily have tomorrow. So I refuse to protect my heart any longer, even though it was unconsciously done. It's just not as important as loving my son as much as I possibly can. Even if that love can be debilitating and terrifying at times.

Lately our lives have been consumed by Ty's masters thesis. He's got less than 2 weeks to get a very good draft to his advisor and committee, so that leaves EVERYTHING else to me. If you know me at all, you understand the implications that holds for the state of my house. It basically looks like something came through it (I won't say what, but it rhymes with "furricane"). I'm trying. I'm working against a ton of stuff, a 16 month old who likes to come behind me and destroy anything I tidy, and my own basic nature. My nature is really something of an optimist. It looks around and says, "Well, I could get this room clean in about 20 minutes . . . so it must not be that bad off. Hey, check Facebook!" Oi. Like I said, I'm trying.

Anyway, that's pretty much all the news for now. Thanks so much to everyone for keeping up with Ayden and for your continued prayers and good thoughts. We're getting closer and closer to that 1 year post-transplant date. Just 4 more months!!! :-D Please pray that Ayden's health continues to remain good and that he continues to have no complications. Thanks so much again. Love y'all!

Day +197

2009-10-16T04:46:00.001-07:00

OK, so I know it's been well over a month since my last post. Sorry! But no news is good news in this case. Ayden's been doing great. His rash clears up with hydrocortizone. It comes back periodically, but then clears up again, so it's not really a concern at all. We did go see gastroenterology to talk about his non-milk-drinking habits. She agreed that it sounds like he still has the milk protein allergy she diagnosed him with at 2 months old. We were really hoping the BMT would clear that up, but guess not! At least it cured his wheat allergy. She basically said that we need to only offer him soy or other alternative milk for several hours at a time before letting him drink water. I've been less than perfect at that. It's not one of those sentimental things, like I don't want to see him upset over not getting his water. He doesn't get upset, he just doesn't drink it :-/. It's that milk has to stay cold. It's very inconvenient. His water sits out all day, I was the cup once at night or in the morning, and we're good to go for a whole day. I'll offer him the milk for a while, then set it down, forget it's out, and then feel like I have to start all over, wash the cup, pour more milk, etc. OK, so it's a minor inconvenience, but it's enough to stop me sometimes. I'll crack down on it at some point. I can tell this is probably going to be a slowish process anyway. He'd have to drink 24 ounces of milk a day to make up for the calories of formula I add to his food. He only rarely even drinks that much water. He's getting better at it, though, so I'm sure it'll work out. Oh, and in related news, he is FINALLY holding his own sippy cup! Thank goodness.

We went to the BMT clinic for his check up on Tuesday. Everything's looking really good. His hemoglobin counts are up finally, and all his other counts are looking great. His platelets were 224K! The best thing is that they told us that we'll come back again in 2 weeks like usual, and then we'll start coming in just once a month! Woo hoo! I'm super excited about that.

There won't be any new pictures this time because I'm at my mom's house with Ayden. Ty is sick with either a cold or the flu, so we came over here last night to keep either of us from catching it. Please be praying that he gets to feeling better soon. We were supposed to go to Dallas this weekend and Ayden and I were going to go to the zoo with Ty's aunt while Ty got some research done at the University of North Texas in Denton. Alas, another day. Also please keep praying for Ayden's continued good progress and lack of complications. It is truly a miracle that he's done so well, and we wanna see him keep it up!

Also, everyone please be praying for our friend Declan. He's +244 days post-transplant and is back in the hospital now with some weird blood counts, fever, and other stuff that has the doctors concerned. Doesn't look like GVHD, but doesn't look "just fine" either, so please pray for his healing. His mom Lanta is there with him and his dad has to stay home with his two brothers and other family and the farm. Please pray for strength for Lanta as well.

Thanks so much to everyone! Love you guys!

Day +154

2009-09-03T18:31:00.000-07:00

Well, everything's been going great around here! Ayden's toddling around constantly (when he's content not to be held for a while), the house is CLEAN (!!!! miracle of miracles), and I currently have chocolate chip cookie sandwich with frosting in the middle (not for long).

Ayden's had a rash on his forehead/cheeks/back of his neck for a couple of months now that kind of comes and goes, so the BMT clinic finally referred us to Dermatology. We went and saw his old dermatologist Monday, and of course, the rash had cleared up, at least mostly. She couldn't see it well enough to tell what it was. BUT, she did say that it didn't sound/look like GVHD or anything viral, etc. She said heat could be playing a big role with it, but it didn't sound like anything dangerous. So that's good news.

Tuesday we had his regular BMT clinic appointment. It's SO great to be out of isolation and into the normal waiting room. Ayden has a blast walking around and staring at people. :-D His counts were down a bit, especially his white blood cell count, but they said that since some other number (the differential, I think?) wasn't down, they weren't worried about it. When you wait so long and impatiently for the counts to come up after the BMT, it's hard to remember that they do fluctuate, even for normal healthy people. Hemoglobin is holding steady, but still a tiny bit low, so he's staying on the folic acid for now. A couple of days before, I think a mosquito had gotten into his pants because he has no less than 17 or 18 bites on him, 15 of them on his legs. Over the course of a couple of days, many of them developed into nickel-sized welts and were really red. So, I pointed them out to the nurse practitioner and she got the doctor to look at them too. They said that, yes, they really do look like some kind of insect bites, not something more serious and he's having a very unique reaction to it. The NP said that they have kids who go into anaphylactic shock from mosquito bites, though, so at least he's not that bad off. We're giving him Benedryl once a day to help the bites go away.

Today, I got some really awesome news! Ayden and I went to see my OB/GYN for my yearly check up. I was telling her about Ayden's WAS and the BMT and everything and mentioned that it only affected boys and girls could be carriers. I told her I wasn't really concerned about if I had a girl who is a carrier since the guys at NIH and elsewhere are making huge strides in gene therapy, so I feel confident that by the time any daughter I have is ready to have kids, she won't have to worry about a BMT if she has an affected son. The doctor agreed with that, then said, "So next time, we'll do sex selection." I had to ask her what she meant exactly. I've heard of some other parents of a boy with WAS who were able to fertilize some eggs, then test for which ones were affected with WAS, donate those to research, then implant the others. They were able to have a healthy, non-carrier baby girl that way. I'm glad that they were able to do that, but the more I've thought about it, I know I couldn't. Once that egg is fertilized, to me, that's my baby, and I have to fight for its life and for its right to be with me. But my doctor said this is different. Apparently, they can run sperm through a machine and separate the Xs from the Ys. Then, they would use artificial insemination methods to get all the X chromosome-d sperm into me to have a shot at fertilizing an egg. In other words, we'd only have a chance of having a girl. I haven't talked it over in detail with Ty yet, but I'm uber-excited by this. I love the idea of adoption and am still very open to it, but I was really worried that it would end up just being too expensive and complicated for us. If God opens the doors for us to adopt, that would be awesome, but otherwise, I just don't know if it could feasibly happen any time soon. And we'd really like our kids to be at least close-ish in age. So in my mind, this procedure would rock! :-D I want a little girl anyway (they're so much more fun to dress!). Under normal circumstances, I'm not really a fan of choosing your child's sex. But in our case, I think it's a valid choice. Anyways, if we do choose to go this route, it won't be for another year or two, but I'm just psyched that it's an option.

Anyways, that's about it for now. Time to do a little maintenance on my clean house! Thanks so much for your continued prayers. God has been so faithful through this whole thing, and I know He will continue to be. Love you all!

Day +143

2009-08-23T08:13:00.000-07:00

Well, everyone is still doing very well here. I've gotten a little lax on these updates as Ayden's medical news stays slow and we're able to get out more. Also, I've been doing more proofreading work for Lee College and I usually get that done at night when I used to write these updates, so they're getting a little fewer and further between.

The biggest excitement we've had lately was last Tuesday at Ayden's T-cell infusion that I talked about in the last post. Monday morning, Ayden's doctor called me and said that Channel 13 (ABC) local news was doing a story on immuno-therapy and had been waiting for someone to get a T-cell infusion to film. They wanted to know if we'd be willing to let them film Ayden getting the infusion and give a brief interview. We thought that sounded just fine, so on Tuesday, that's what they did. It was funny how nervous our doctor was. :-D Anyway, the story aired on Thursday night on the 6:00 news. It was so cool! Ty, Ayden, and I went over to my mom's to watch it since we don't have TV service (we just watch DVDs. Go Netflix!). Ayden was very pleased to himself and Mommy and Daddy on TV and when it was over, we all cheered and he laughed and clapped! I'm still waiting to see if I'm going to be able to get a copy of the clip to save for him, and hopefully to post on here too. Of course, it's the ONLY thing from that night's news that isn't on KTRK's website. Stinkers. Ayden hasn't seemed to have any adverse reactions to the T-cells (there's a slight possibility they could cause GVHD, but they tested them for that against Ayden's cells before they did the infusion and it was fine,

so it's highly unlikely). Hopefully, they'll just do their job and keep CMV, EBV, and aednavirus away.

Other than that, everything's going pretty well here. Ayden's walking like he's being doing it his whole life, other than the occasional fall. He still can't stand up from the floor on his own, so he has to crawl over to something and pull up on it, then he can get going again. It's pretty awesome to see him walking so much now, though, and hard to believe that he wasn't walking at all 1 1/2 months ago!

On Monday, we took Ayden to Galveston for the first time and he had a blast! He liked the beach quite a bit. He was ok in the really shallow water, but when we put him a little deeper, he was ok until a wave came up and hit him in the face. After that, he didn't want anything to do with the water at all. We sat in the sand and played with his pail and shovel until we decided it was time to get him out of the sun. We ate lunch at Casey Gaido's (the less classy, but equally good side of Gaido's), then went to walk down the Strand a bit (for my non-Houston area

friends, that's where most of the shops are). I was sad to see that much of the Strand still hasn't

recovered from Hurricane Ike yet. Many of the shops are still closed and the Strand just doesn't seem as long as it used to. I was able to get a cool Henna tattoo (which I

promptly removed once I found out we were going to be on TV :-), and La King's Soda and Ice Cream Shoppe had recently re-opened, so we were able to get hand-stirred sodas and ice cream and let Ayden run around a bit. We tried putting him on the horse ride, but once we added the quarters and it

started moving, he got a little nervous. In his defense, it was pretty fast. Kind of like a mechanical bull for one year olds. We pressed a penny for him as a souvenir, then headed

home. I made the mistake of taking his little water shoes off in the car. There's still a pile of sand under his seat. Oh well.

Anyways, that's what's been going on with us. Ayden is doing extremely well, so we're incredibly happy. Still keep him in your prayers, as he's not completely out of the woods, but things are definitely looking wonderful!

Love you all!

Day +130

2009-08-10T05:09:00.000-07:00

Sorry it's been so long! Ayden just keeps me really busy! He doesn't like for me to be on the computer long enough to get anything done. Also in this case, no news is good news. There hasn't been much excitement around here medically, praise God! We've just been having fun living something MUCH closer to a normal life. We're planning to take Ayden down to Galveston in a week once Ty's classes are wrapped up for the summer; we've been furniture shopping, out to eat, mall walking, and any number of other things. Unfortunately, we're still not comfortable taking him to church because it's just too many people in too confined a space who, in the case of MoSt at least, would all want to see him up close. We did visit Lakewood C of C a couple of weeks ago to see my nephew Joshua get baptized! Very exciting!!! Not as many people know us there, so there were only a few people who wanted to see Ayden up close, so we felt it was safer.

Anyway, as I said, Ayden's been doing really well. We're down to one clinic visit every two weeks. His counts have all been really good. His platelets were 244K last time we were there! He's still on the folic acid for low hemoglobin, but it went up a bit last time, so that's looking good too. Last week when we went, he got his IVIG treatment. He's still testing positive for an antibody in his blood attacking his red cells, so the IVIG will hopefully protect them long enough for that antibody to die off. His next clinic appointment is on the 18th, and it'll be a little different. Before his transplant, his donor agreed to have some peripheral blood drawn so the lab at TCH could grow some special T-cells that would be specifically designed to fight off Epstein-Barr Virus (EBV), Cytomegalovirus (CMV), and one other that I can't remember. The donor was positive for exposure to all of them. They're kind of like chicken pox: you get exposed to the virus and it may never do anything, but it can activate or re-activate at any time. It can be a really big deal in transplant patients since they don't have the immune systems to fight them off, and apparently, it's even more common in post-transplant WAS patients. SO, long story short, they've been growing these T-cells for over 5 months now and they're finally ready to use. Of course, Ayden's been negative so far for all these viruses, but these T-cells will help keep him that way. The doctor said that he'll get pre-medicated with Benedryl (to prevent an allergic reaction), and then the infusion will take all of a minute. She said it's only about 2 mls (CCs) of fluid. They'll also freeze some of the T-cells to have on hand in case any of these viruses ever do pop up even after this infusion.

Other than that, Ayden's taken a few steps on his own, but I wouldn't say that he's "walking" yet. I was just really excited because both Ty and I were there to witness those first few steps a couple of weeks ago. I was worried it would just be me since I'm home with him so much more. Ayden's also moved his bedtime to 8:00 instead of9:00. All of a sudden, he just started falling asleep on us, so we had to move his normal schedule up to accommodate him. He's just recently learned how to play chase games. We can get down on our hands and knees and say, "I'm gonna get you!" and he starts giggling like crazy and either crawling or cruising away as fast as he can. Then he'll look back and laugh and start moving again, then repeat that several times till we catch him and tickle him. It's pretty cute.

He's been having a blast being able to go out places. It's funny how hard it is to stay home now that we can get out. Always seems like there's something we need to go do. :-D As usual, he's great in public and with other people. He hung out with my sister-in-law Kristen and 5 of her 6 kids one day while Ty and I ran an errand, and apparently had a good time with that. He also got to meet my friend Jamie and her little boy Leo who's a couple months younger than him, and they had a good time together too. We went and visited my great aunt and uncle, Aunt Dean and Uncle Billy Ray, last week. My cousins Cindy, Claudia, Jana, and Jaclyn were there too. He had a great time over there!

I've actually started working from home a bit too. The office I worked for at Lee College approached me about doing some part time copy editing from home. They're paying me $10 an hour and I can't work more than 19.5 hours a week, but it's something! They haven't generated nearly 19.5 hours worth of work for me yet, but we're doing fairly ok financially (although a little worse than when Ayden was on social isolation!), so anything I do get is just going to go straight down on debt. It's nice to have something real to work on every once in a while. I wouldn't trade staying home with Ayden for the world, but sometimes it's nice to have some kind of adult connection and feel like you're doing something important outside of being a mom. Plus, I figure it'll look really good on a resume if I wanted to try to do more of it for other people too. Right now, I'm technically a "consultant" for the office. I've enjoyed everything I've done so far. I just hope they'll start sending me some more stuff! It just doesn't take that long to read over a poster!

Well, that's pretty much our lives right now. We're just really enjoying being a family and watching Ayden develop. He's the coolest thing ever! :-D

Thank you all so much for your continued prayers and support. We're not totally out of the woods yet, but the light's getting a lot better. Love you all!

Day +117 - Great news!

2009-07-21T20:59:00.000-07:00

We had an awesome clinic appointment today! Ayden's platelet count is 234,000!!!! All his other counts look really good too. His hemaglobin is still a little low, but stable. The folic acid doesn't seem to have affected it thus far. Hopefully we'll see it start going up when we go back IN TWO WEEKS! He's doing so well, they said we don't have to come back next week! Yay!!! PLUS, the results of his last nasal wash came back negative for rhinovirus, so he was able to come out of isolation at the clinic and wait in the regular waiting room with other people and everything! There was a little girl there who is his exact same age (born on the same day) and they couldn't take their eyes off each other. Lol. She's going to be a donor for her big (5 year old) sister. The doctor got to see him cruising around a bit, smiling, laughing, "talking," and all of that, so she was very pleased. He's still got a bit of a rash on his head, but it doesn't look like GVHD and the Protopic ointment isn't working on it, which indicates that it's probably not GVHD. They said it looks like it could just be an allergy to his bath soap or something, so we're going to go back to Cerave or Cetaphil to see if that helps. He's got a little bit of the same rash on his leg near his diaper area, so they prescribed Nystatin cream for that. They also decided to put him back on Previcid (reflux med. Bit stronger than Zantac) since he's still throwing up every once in a while. The Zantac has helped, so hopefully this will help more. It only happens while he's actually eating, and it usually looks like he just got a little acid in his throat. He's having really loose stools, but still giving plenty of wet diapers and having NO trouble with tear production, so the doctor isn't too worried about that. They would only be concerned if he was starting to get dehydrated because of it.

ALSO, I found out that as long as there aren't any complications, the social isolation actually lifts at day +100. Therefore, I can take Ayden out places now! Of course, I still have to be very cautious. He won't be revaccinated until March, so he's still susceptible to illnesses, but as long as I keep the cover over his stroller, he should be fine. So we went up to Lee College today to visit my old co-workers and my friends while we were waiting for his prescriptions to be ready. Being around kids unprotected is still a no no, but adults who haven't and whose kids haven't been sick are welcome to visit. In public, I'll be keeping that rain guard over him at all times, and I don't plan to do much going out just for the sake of going out. BUT, I think we are going tomorrow to get him some more food. :-D They'd told us right after his transplant that we needed to protect his skin really well. We took that to mean not having him in the sun at all. I asked about that today, and the doctor said that he can get in the sun, but he just needs to have really good sunblock on for sensitive skin. Based on that information, I think we'll be blowing up the inflatable pool that he got for Christmas last year pretty soon. :-D All in all, an awesome appointment. We go back in two weeks for counts and another IVIG infusion. He's still positive for an antibody that's attacking his red blood cells, so the IVIG should help protect them until the antibody dies out. Please be in prayer about that. It's under control, but we want it gone! Also, please pray that his hemaglobin count starts to come up back to normal. It's been low for a few weeks now. Thanks so much everyone! Love y'all!

Day +111

2009-07-15T19:30:00.000-07:00

Well, everything's still looking good! We went to the clinic yesterday (down to once weekly appointments! Hallelujah!) and all his counts look pretty good. The only thing they were concerned about at all is that his hemaglobin has been just a little low the last few visits. It's staying consistent, but at a bit of a low number (8.8 - 8.9 for those of you who get that). Also his MVC (I don't remember what that stands for, but it's something to do with the size of the red blood cells) has been a little high, meaning that some of his red blood cells are probably irregularly shaped which can contribute to their not being able to hold onto iron which can reduce hemaglobin production (don't worry, I don't really get it either. I assume they did all that school for a reason, so I should trust them). ANYWAYS, so they prescribed folic acid for him that will apparently somehow correct that problem. Basically, it's no big deal, so that's the good thing. The folic acid is a tablet that I'm supposed to give him half of once a day on Mondays, Wednesdays, and Fridays. They said to dissolve it in some kind of fluid and have him drink all of that fluid. I decided just to try putting it in his food. I halved the tablet into the right dose, then I halved that and put it on his spoon. Still too big. He gagged several times before swallowing it. Not because it was too big for him to swallow, but because he could taste it. Lol. So then I crushed up the other quarter of it and sprinkled a little bit at a time onto his spoon and that seemed to work. Oh, the things we do...

Some great news we got while at the clinic is that Ayden's chimerism is now 100% donor! Yay!!! This means that all of the cells in his bone marrow are the donor's cells and not his own, so we don't have to worry about any recurrence of his Wiskott-Aldrich symptoms. While he was on the Cyclosporin, it had been floating around 98 - 99%, so we're psyched it got all the way up to 100%. Praise God!

Yesterday was IVIG day. He's still getting it once a month to bolster his immune system and keep him from developing antibodies in his blood. The only problem with IVIG day is that it takes so long! The infusion lasts about 2 hours. They give him Tylenol and Benedryl before hand - the Tylenol to prevent fever because it can sometimes cause a low grade fever in the patient, and the Benedryl to prevent allergic reaction AND to hopefully get him to sleep through the whole thing. Then they can't just let it run the 2 hours. They have to set it for like 15 or 20 minutes, then come in and accelerate the dose about 3 or 4 times before it goes at the full volume per minute. So, he's asleep on my chest, I'm a good 5 feet away from the nurse call button and this incessant alarm is going off to let the nurse know to reset the speed. He wakes up 2 of the 3 times this happens, completely (to coin a new phrase) Benedryl-ed. If it does anything to him like it does to me, that means he was probably seeing stars and little birdies floating around his head about that time. The nurse would finally come in and reset the machine and I'd calm him back to sleep. Then to make it more fun, they did a nasal wash on him before we left to see if he's still positive for rhinovirus. If he's not, we'll be able to get out of isolation and rejoin the BMT public. BUT that means they stick a small tube up his nose, squirt in some saline and then draw it back into the syringe. He's not a fan.

Then the Benedryl kind of throws him off for the rest of the day, so he's just not himself. Again, much like Mommy on Benedryl.

Anyways, today was much better. We enjoyed staying home and having fun. He's a wonderfully delightful child when he's not medicated. :-D The bottom line is everything is looking awesome. God is so good. I know He's keeping Ayden in His arms and keeping him well. We can't wait until we can take Ayden places and have him meet his cousins again. We were telling him this

morning all the places we are going to take him in April of next year (1 year post will be in March). The zoo, the butterfly exhibit, Moody Gardens, Pelican Island on the ferry, Hermann Park to ride the train. You name it, and it's suitable for an almost 2 year old, and we're going! Financial donations will be accepted! Lol, just kidding.

Thanks again for the continued prayers and support! Love you guys!

One Little Bit of Truth

2009-07-09T00:22:00.001-07:00

It's late. I'm tired. And woefully aware of the fact that my darling son will be awake in about 5 1/2 hours forcing me to be up with him. But I feel like I need to get this down. Commit "pen to paper" only in a digital sense. Just as a warning, this is not exactly a touchy, feel-good kind of post, so stop reading now if that's what you're looking for.

It's amazing what one little bit of truth can do in your life. It can turn the whole thing topsy turvy. I've experienced this fact several times throughout my life, but not for several years. Actually, probably not since I was about, oh, 19 years old.

Well, it happened again last week. Let me tell you the back story first, though.

So here's a confession. I have been mad at God. Mad is far too weak a word. I've been furious, incensed, enraged, livid, and violently wrathful towards God. It's built and built over the last year. As things with Ayden escalated, so did my anger. Yes, as you have all seen in my notes, I kept trying to rely on Him. But every time something else went "wrong" with Ayden, or eventually anything else, my fury roared back to life. It got to the point where even stubbing my toe was God's direct insult to me. Yes, I had been trying to keep this wrath at bay, knowing somewhere deep down that God was still good. I would let the flames rage for a while, then with all I had within me, tamp them back down. But there was consistently a low flame, and it was getting harder and harder to control, flaring up more and more often and with greater and greater intensity. Fortunately, something had been planted in me a LONG time ago. I found through this that God DOES have a firm grip on me and He will not let go. That's something I was unsure of before.

All this culminated last week. We'd come from a clinic appointment; fairly good, just looking to control the rash that had been developing on Ayden's head. They prescribed the Protopic ointment, so on the way home, I dropped off the prescription at Walgreens. It was time for Ayden to eat, so I stopped in the Target parking lot and parked under a tree, turned around in my seat and fed him. He ate well--all 8 ounces of his sweet potatoes and turkey. We went and got some gas at Walmart, then I started heading back to Walgreens to pick up his medicine. All of a sudden, he got really fussy, and then it happened. He puked all over himself and his car seat. There was nothing I could do. I had no towel, no way to clean him off. The line for the Walgreens pharmacy drive thru was about 8 cars long. We left the prescription and sped home, Ayden crying the whole way, trying to keep his hands out of his own vomit.

I was fuming, furious that God had allowed this to happen. Bad things happening to me was one thing, but staring at my son, who's already been through more in one year of life than some people ever go through, absolutely beside himself covered in his own vomit when there was absolutely nothing I could do about it was the last straw. See, an idea (lie) had been planted in my head a while back. It goes something like this: it's sin for us to see the good we should do and not do it, right? So how is it ok for God to see something going wrong and not do something about it? He has all the power in the world, but He allows bad things to happen. How is that ok? That's the thought that kept racing through my mind in my mad trek home. And I was letting God know about it too. I was yelling, screaming (more in my mind than in reality; I didn't want to freak Ayden out more than he already was). I was telling God that He sucked; that one of my ex-boyfriends was right: God is a sadist. I had even begun to think that it would really be easier to believe that there is no God than to deal with His allowing my son to be in pain. If I could not accept that He is who He says He is, it would make more sense to give up any belief at all. The only thing stopping me was one question: "Lord, to whom shall [I] go? You have the words of eternal life. [I] believe and know that you are the Holy One of God" (John 6:68-69). As much as was starting to wish it wasn't, that belief has taken deep root in my heart, and Satan and his hoards cannot pull it up.

By the time I got home, Ayden had tentatively fallen asleep, having cried all the energy out of himself. Still furious, I said something to the effect of, "If You love me at all, You'll keep him asleep until I can run into the house and grab a towel to wrap him in." Immediately, Ayden woke up and started crying. In the passenger seat, I had my next attempt to "fix" my spiritual life--The Bible in 90 Days. I picked it up, heaved it to the floor and yelled, "You can just forget about that!"

To make a long story shorter, I got Ayden out of the car, cleaned up and calmed down. But I was still furious. However, the day before I'd gotten in an order from Amazon.com. The Bible in 90 Days book and one called Wrestling Prayer by my old friends Eric and Leslie Ludy. Remember that I said God still had a hold of my heart? Well, I felt a little tug there then, saying, "Just pick THAT book up." I did, and here's what I found:

"As the story goes, Leslie was pregnant and then suddenly one day she wasn't. She had miscarried. Somehow our precious little child had been violently touched. And the sorrow was tremendous. The Thief had come, and he had stolen, killed, and destroyed. For most of my Christian life, whenever the enemy had attacked me with darkness and confusion, I'd simply assumed that God was causing or allowing it. But in grappling with this situation, through much prayer and intensive study of God's Word, Leslie and I began to realize that this attack had not come from Him, but from the enemy of our souls . . . Leslie and I hadn't been resisting the enemy's blows because we had assumed they were coming from God -- or at least being allowed by God for the purpose of discipline. And yet, when we really thought about it, we had to admit that the result in our spiritual lives wasn't the life-giving victory God's loving discipline brings. Rather, it was the hopeless despair and discouragement that the enemy brings."
- Eric Ludy, Wrestling Prayer

I was rocking Ayden as I read this, and in less than a second, I began sobbing. He looked up at me and smiled, thinking I was playing a game with him. All that anger, all the fear that has gripped me since Ayden's birth and the beginning of our dealing with Wiskott-Aldrich Syndrome and bone marrow transplants flowed out with those tears. Suddenly I remembered what I'd known back in high school and for a brief period beyond: that God loves me, He wants good for me, He protects me, He jealously keeps His hold on my life, even when I screw up. He desires me more than I could ever fully grasp. For years now, I've been trying to "get back" to what I had back then. I wanted that fire back, that unwavering confidence that I was in league with the God of the universe, and therefore, untouchable. In the few seconds it took to read those paragraphs, it came back. My heart is now willingly back in His hands.

So many people have told me over the past year that I am very strong. I want you to know right here and now that all the good things that have happened to Ayden have been accomplished by God in spite of me. He has plans for this little boy's life and He couldn't allow me to get in the way of them. Believe me now when I say that from here on, I will be a help and not a hindrance to God's work in my son.

I am ready now to start back on that journey. And I thank God that even though I lost a few years, He is still aching to make me into His plans for me. I don't know what they are, and I'll admit I'm a little nervous to find out. It doesn't seem possible that I will do "great" things, such as they are, when my life consists of taking care of Ayden and Ty, cleaning my house, and cooking meals. But I know that He will make a way and I will do great things in His name. God has re-lit the fire in my heart and THIS time, I am determined not to let it be reduced to one simmering ember.

Day +102 - Ayden's Birthday!!!

2009-07-06T08:32:00.000-07:00

Happy Ayden's first birthday, everyone! Today is a very happy day. Our living room is scattered with new toys and the torn up boxes they came in, Ayden has frosting on his chest and blue lips from a bite of left-over birthday cake, and we have some major trash pick up to do. We had his first birthday party yesterday. Of course, it was just grandparents and great aunts, no kids, but we still had a great time. It's funny--in one way, I can't believe he's a year old, but in another, bigger way, I can't believe it's only been one year. It feels like an entire lifetime since Ayden was born. This has to have been the longest, hardest, most wonderful, craziest year of my life. I made the cake. You may recall, it was supposed to have a monkey on top, but that didn't work out so well. The cake I was going off of online was much larger than ours, so when I made the monkey the way it prescribed, it was FAR too large (think Bust of Pallos Athena). So then I tried to carve it down smaller, but it was made of cupcakes, and that just proved a bit impractical. Around 3 AM we ended up with a monkey hybrid we nicknamed "Blobby" before laying it to rest in the trash can and going to bed ourselves.

So onto the medical stuff. Ayden's last clinic visit was on Thursday and everything's looking great! Even though he's not drinking the 30 oz of water a day that they originally prescribed, his counts are fine and he's well hydrated without the IV fluids. He hasn't gotten any kind of fluids or anything at night for over a week and he's doing well. Praise God! That's what we've been praying for for months now! My prayers have really been answered because my major request is that he'd be off of all that by day +100 so he wouldn't have to be accessed just because he wasn't hydrated enough. It happened a week before that day. God is good! The rash on his head was looking angrier that day and had started itching, so they prescribed a Protopic ointment. It's a topical immune suppressant (think hydrocortizone) that's safe for the face. He got taken off of Cyclosporin completely and off of Ganciclovir, so no more oral or IV meds at all! We've been putting the Protopic on his head twice a day since Thursday and it's looking incredibly better. I actually can't

see the rash at all anymore. Ayden still scratches at the back of his head a little, but that's it. It's possible that the rash was a touch of skin GVHD, but not very serious. If that's all the GVHD we deal with, we will be EXTREMELY fortunate (Aimee, I admire you more than you could know!).

Thanks to everyone for all your love and support during this past year! We've met some amazing people (all you other WAS moms and your sons) and made some great friends as well as being reminded how amazing all our pre-existing friends are. 102 days down, 263 more to go until Ayden's a normal, happy, healthy little boy (prayers go up!)!

Have a happy Ayden's birthday day!

Day +94

2009-06-28T18:02:00.000-07:00

Sorry it's been so long since my last update! We've been pretty busy. Things are going pretty well. Ayden's counts are looking good. He seems to have kicked whatever it was that was making him run the fever. We haven't had any problem with that since a few days after we got out of the hospital.

His PICC line, the double lumin central line in his arm, has been removed. It had pulled out about 3 cm during a bandage change while we were in the hospital, so they were calling it a mid line instead of a central line. It didn't seem like it was a big deal other than some medicines can't go through a mid line, but all the ones he gets IV regularly were fine. The Friday after we got out, though, it stopped giving blood return. Since it wasn't doing that anymore and he still has the portacath, they decided just to go ahead a pull it. It's nice not to have to worry about it any more. His poor arm looks horrible. There's just a little scar where the line actually stuck out of his arm, but the bigger scars are where the stitches pulled while they were still in. They were way too loose and pulled constantly. He never acted like it bothered him, but one pulled completely out and the other was almost out by the time they cut it. Hopefully the scars will get better over time.

Yesterday we did end up back at the ER, but for a totally different reason than we normally end up there. We went into the clinic on Friday and everything was fine. He'd been eating enough to get off the TPN (IV nutrition) he'd been getting 12 hours every night. They said they'd just put him back on fluids, but since we still had one more bag of TPN and lipids, to go ahead and give him that Friday night, then we'd start the fluids on Saturday night. Well, Saturday morning, I woke up and went to check on Ayden and he was soaked. I figured he'd just leaked a bunch out of his diaper because the TPN does make him pee quite a bit. So, I changed his diaper and his shirt and brought him out into the living room. After just a little bit, I noticed a wet spot right over his dressing over this portacath, so I pulled up his shirt to investigate. The whole dressing was completely soaked and it was clear that the needle was not completely inserted anymore. As he moved around, the needle came completely out if it wasn't already. At first it didn't seem like a big deal. The homecare nurse was going to come out later that day to re-access him. But as we kept looking, we realized that a good bit of TPN and lipids had flowed under his skin instead of into his port or just under his dressing. His whole side was swollen. Normally, his port sticks up a good half inch or so and we couldn't even make it out. It was hard to feel. As I touched it, he started crying and we realized that it was painful to him too. So, we called the BMT Unit charge nurse and she said to watch it until 4 (8 hours later) and let her know how far it had gone down. So I called the homecare nurse to let her know that we weren't going to re-access him, and she said she really thought someone should look at it. She strongly recommended taking him into the hospital. We called the charge nurse again and she said that she actually agreed. She said there's not really anything to be done about the liquids being under his skin, but she was concerned that the port would clog and become useless because I hadn't been able to get any heparin in it before it was de-accessed. We're not quite ready to lose that port yet. So, we brought him to the ER where they took a look at it and fairly quickly discharged us and sent us up to the BMT unit. Sharon, the charge nurse came out to take care of us. The swelling had already gone down some, so that was encouraging. She tried to access the port twice with no luck. She got a hold of a nurse from the department that handles dressing changes and does lots of accessing and de-accessing, and he came up and fortunately was able to access the port on the first try. So thankfully, we were able to get some heparin in the port to keep it from clogging.

There is still just a little bit of swelling and it's still a little sensitive to the touch, but Ayden's side is looking a lot better. The only thing they told us to watch out for is redness and swelling on the skin because the lipids could cause tissue death. It sounds really bad, and it's not great, but worst case scenario, some of the tissue around the chest wall will die and they would have to do a very minor surgery to cut it away. They said Ayden's organs and whatnot are safe. He would just end up with a little scar tissue in his chest wall. Like I said, not great, but not completely awful either.

So, after all that, the doctor said we might start discussing removing the portacath. We just have to make sure Ayden gets enough fluids throughout the day. Of course, he's not making that easy. Today we probably got 6 or 7 ounces in him being persistent and offering him water at every opportunity. That's less than 1/3 of what he needs. If things don't improve tomorrow, he'll probably have to re-accessed and go back on IV fluids.

Other than all that fun, we're gearing up for Ayden's first birthday! We'll be having a small gathering of grandparents and great aunts. I'm going to make his cake. I found a really cool one online that I'm going to go off of. It is really cute, but it also looks fairly simple. Here's a picture:

I got Mom's old icing recipe (yum!) and a yellow cake recipe, so I'm going to make a small practice cake this week (not the whole thing, just one little round cake and some icing to make sure I'm doing the recipes right), then I'll make the real cake next Saturday. I went to the little party store in the mall today which was a big mistake. All I wanted was a little birthday hat for Ayden, but when I walked in, there was an inflatable monkey and it was cheap! I ended up getting the hat, one large inflatable monkey, a large inflatable palm tree, a small inflatable monkey, a 1st birthday tablecloth, and a 1st birthday high chair decorating set. I'd already gotten plates and napkins and whatnot. All in all, it wasn't THAT expensive. :-D So we're going with a monkey theme.

I also got my first pedicure since Mother's Day today. It was wonderful! It came with a face massage and everything. My feet feel pretty now.

Ok, so those are the happenings around our house. Please keep up the prayers, especially about his drinking. He's doing much better, we just need him to do a little more and be consistent about it. For the first time, though, I feel like it's just around the corner and that tomorrow will be a better day for it. Just pray that's true! :-D Thanks so much for all your love and support!

Day +82

2009-06-17T05:05:00.000-07:00

We're home! It's so great to be back! Ayden slept all night in his crib (still asleep actually), and Ty and I slept great in our own bed. I never appreciate home as much as after a hospital stay.

Here are the conclusions from our little stint in the hospital:

1) They never did figure out what caused the fever that put us in. All the blood cultures came back negative, so we know there was no infection in his blood. It's kind of hard to tell if he was fighting something off somewhere else since they pumped him full of antibiotics.

2) Ayden had developed an autoimmune problem where he had antibodies attacking his red blood cells. Apparently WAS patients can develop some autoimmune stuff even after transplant. He got three heavy doses of IVIG over the last 3 days in hopes of overwhelming the antibody and protecting his cells long enough for it to die off.

3) Results from the HHV-6 test aren't back yet.

4) His counts came way up. His neutraphil count and white and red blood cells were the highest I've seen them. His hemaglobin was also normal by the time we left. I'm sure that's thanks to the red blood cells he received, but it's still nice.

5) We go back into clinic on Friday. The doctor said we'll probably wean the Cyclosporin even more at that point which will help his immune system start fighting some of these things on its own. We're already down to .06 mls (CCs) twice a day. I have to have a special tiny syringe to give it to him and then I have to make sure he sucks on his pacifier or drinks something to make sure it goes down instead of just sitting on his tongue because it's such a tiny amount. Of course, I guess that means that it's a really powerful drug since it can still affect someone in that tiny amount.

Anyways, hopefully that was our last re-admittance into the hospital. Thanks again for all the prayers and support; I can't say that enough! Keep the prayers going! Love y'all!

Day +78

2009-06-13T14:30:00.000-07:00

Well, we're still in the hospital, but Ayden's fever is gone thankfully. We're still waiting on all the blood cultures to get back to see if there's any infections. His hemaglobin counts were down, so last night he got a red blood cell transfusion. His doctor came in and said that she was sending off a test for HHV or human herpes virus sometimes seen in transplant patients. HHV-5 is Cytomegalovirus and HHV-4 is Epstein-Barr Virus, both very common in post-transplant patients. She said the rash that he's had for a few days combined with the lowered hemaglobin levels looks suspicious. Neither would be good. If that test comes back positive, the first step will be 3 days of heavy IVIG and see how he responds to that. If that doesn't work, he may have to go back on steroids, etc. Hopefully if that's what it is, it will respond to the IVIG quickly. Even more hopefully, that's not what it is. :-) Anyways, as long as Ayden doesn't get another fever, we have hope of going home fairly soon. Every day he has a fever, they have to draw more blood cultures and the clock starts over again. It takes about 48 hours for the results to all come back, so that's at least how long we'd have to stay if he got another.

He's obviously feeling a lot better since the fever went away, so that's a definite plus. Today for the first time in almost a week he wanted to get down on the floor away from me to play. It was nice to see him like that again. My mom brought him a bottle of water with a squirt bottle cap which made it 100 times easier to get water to him without choking him. I think with a little work, that might solve our problem with his getting enough fluids. HOWEVER, since water has no calories, we're back to having a problem with food. Ayden has been losing weight because he's not getting enough calories. To make that harder, it appears that he's a picky eater, plus he only has 2 teeth nubs so far, so I can't really give him more high calorie meats. The only thing I can really give him as far as table food that's high calorie right now is avocado. He eats some, but not enough to really make a difference. But we'll get there. He is eating a bit more now that he's totally off the steroids. He's again gone back to only eating sweet potatoes, but that's ok since they seem to hide the flavor of the formula we mix in pretty well. He still likes fruits, but not with any formula in them, so it actually isn't really good for us to feed him those right now.

Anyways, we can't wait to get out of here and get back home again. Thank God we are here, though. I don't even want to think about what would have happened all those months ago if we hadn't been so near such a wonderful hospital. Keep praying that Ayden won't get another fever, that they doctors will figure out what the problem is, and that it will be fixed really quickly so Ayden can continue on the road to recovery with no more complications.

Love y'all!

Day +77 - Back in the hospital

2009-06-12T05:29:00.000-07:00

Just thought I'd give everyone a quick update. The last couple of days, Ayden has been even more clingy and fussy than usual. Yesterday I took his temperature and it hovered around 99.4 for hours. The BMT team at the hospital doesn't have you bring them in unless it hits 100.5 or above. I kept monitoring it and it rose slowly. By 8:00 last night, it hit 101.1, so I called and they said to bring him into the ER. The BMT fellow (already a doctor, but in extended training in a particular field) I talked to made it sound like he'd just get some antibiotics and be sent home, especially since he already had a clinic appointment scheduled for today. Around 10:00 or so, he let us know that since Ayden's less than 100 days post-transplant and still at high risk for infection, they wanted to keep him overnight to be sure. So we still thought we'd be home by sometime today. When we got up to the room, though, (right next to our old room) the nurse told us that usually when they spike a fever like this, they stay in the hospital 3 - 4 days until all the blood cultures are back to see if there's an infection. So, we may be here for a bit. I'll keep you posted as I can. Please be praying that it's nothing serious. Thanks! Love y'all!

The Welborn Family

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