The new kid

Annie made it back for the first day of school and I finally felt I could exhale.  While we have so much to celebrate, it has been hard to get excited because she has been "cured" before only to relapse a year later.  There are many things different about this time however it seemed best to just be thankful for each day.  This event, however, felt like crossing the finish line because it can never be undone.

I doubt there have been as many kids as excited to start school as Annie.  She had her backpack ready for weeks and her uniform set out days early.  Normally poky about getting to bed, she was like a jet engine getting ready for bed.  Similarly she was a child possessed in the morning doing her chores (and everyone else's) to get out as early as possible.

While the excitement will, I'm sure, wear off there are some interesting changes that I'm pretty excited about.  With Annie's years of low hemoglobin it has been hard to know if some of her struggles were her nature or her medical situation.  She would arrive home from school and shut down.  Evenings were straight uphill with us pushing all the way.  Annie's mood would erode as the hours passed and if I tried to help with homework I'd be met with harsh outbursts.  Tonight, however, she came home and plopped herself down at ... her desk.  Not the couch or her sister's room where the endless game of avoid what I have to do would begin.  She happily started her homework and when she had a question, I tentatively offered suggestions to which she said, "that's smart, thanks," and went back to work. All I could do was slowly and quietly back out of the room so as not to risk waking the bear who had apparently gone into hibernation.

So we'll keep our fingers crossed and keep up our last major medical task - watering Annie.  She needs to drink 1750 ml of water a day and that doesn't come naturally.  We set timers and measure out water bottles to stay on track.  The doctors lowered her immunosuppressive dose as well as removed another medication after her appointment Monday.  Hopefully this, combined with her additional water requirements, will help make progress on the kidney front.

I'll keep updating approximately every two weeks as we move through doctor's appointments this fall.  At some point I hope to move to a different blog where people can get an email if there is an update posted.  This is because there is still a significant part of this story to tell.  Who is the mystery man with stem cells that produce improved homework behavior?  We of course want to share all those details with Annie's super support team but we have to wait two years!  So I'll figure that out before we hopefully can move on to an un-blogworthy routine.

Day 100!

     This is Tom writing. Today is Day 100, a significant milestone in a Bone Marrow Transplant. It represents two different things. First, like any milestone it is a chance to reflect on the past (e.g. "I just turned 40 and still have my hair... good."). For us, this reflection is almost 100% positive. Prior to the transplant, we had "the consultation", a meeting with our doctor where she laid out all of the incredibly scary things that could happen. Essentially none of them did happen. Yes, there were hurdles along the way (hurdles which now seem like bumps). However, given what could have gone wrong, we're incredibly blessed that things went so well. Second, Day 100 represents a change in the rules for the future. Gone are the masks (though we still do have to be careful around sick people). Gone or much relaxed are many of the rules Annie has been living under. To celebrate we went out to a favorite restaurant to celebrate (see the picture above). Soon you'll see Annie at many of her favorite haunts.
     Our we completely out of the woods yet? No. Annie will still be on fairly heavy-duty medication for a full year. She'll still have many rules to follow (such as staying out of the sun). Plus, no new puppies for us for a while. Plus, there's still some chances of bad things happening, though those chances diminish every day. However, at this milestone we are definitely cheering!

10 bottles of beer on the wall...

Day 90: 10 days to go.  Annie's summer of seclusion is about to come to an end and today her doctor gave the go-ahead for her to at least begin school on August 28th - a mere six days after Day 100.  The doctor stressed that this is not the norm and that very few of the pediatric patients will be resuming school on time.  Annie's relatively smooth recovery so far is thanks in great extent to all those who came before her and the medical professionals that meticulously refined their craft from each patient's experience.  We know some of those patients and we are indebted to their struggles which were studied and learned from to help give kids like Annie a smoother ride.

Today was Annie's first needle poke in three months - now that her Hickman has been removed.  She handled it like a champ and, for the first time in seven years, did not sit on my lap or hold my hand to have it done. Annie's white and platelet counts stayed in the normal range and her hemoglobin took a step up to 9.4 from 9.0.  This is a happy development and hopefully means she won't need any more transfusions.   Her creatinine level however is elevated so she will add another specialist to her arsenal and is scheduled to see a nephrologist in a couple weeks to tend to her kidneys.  Until then we'll stay even more vigilant about keeping up her water consumption.  Already a timer goes off every 30 minutes for her to drink 2 oz of water all day long but we'll redouble our efforts and hope for improvement by our next appointment in two weeks.

We'll plan to post on Day 100 when we hope to take Annie out into the big world to celebrate.

Rolling Along

Day 86: Still hanging out at home without event, well except that Annie now rolls everywhere.  Next doctor's appointment Monday, will update after that.