A lesson in faith

Today's appointment was reassuring in the normalcy of Annie's blood counts and chemistry panel.  She had two more immunization shots and her next appointment is scheduled for February 13th.  We were especially relieved as we felt we had tempted fate a bit by taking a celebratory trip to Hawaii after Christmas.  It was great to see that she came through it stronger than ever on both the inside and outside.

Her strength was especially apparent on the last day of 2013, our last on Oahu.  We were dressed for dinner and had an extra half an hour before our reservation.  We decided to drive to Diamond Head and see what we could.  We arrived just as the last visitors were permitted to enter.  We tossed off our dress shoes, put on our sneakers and figured we'd hike into the crater 15 minutes then turn back 15 minutes.  It was a lovely time of day to hike, the sun was setting and the air had cooled.  The crowds were gone.  As we walked Annie kept pulling ahead.   Katherine and Tom are both distance runners but Annie was heading the charge and leaving us out of breath.  With each switchback she pushed on and we struggled to keep up.  Each turn revealed stunning new vistas and surprising terrain.  Outlooks, tunnels, winding staircases and steep ones.  The pace was relentless but Annie never slowed.

As we rounded the bend towards the first major lookout I was overcome with the reality of what was happening.  2013 was ending, a year that began with a heavy heart and so much struggle ahead, and Annie was sprinting up Diamond Head in Hawaii.  I turned to Tom, overcome by tears and emotion.  We never would have believed the year could have ended this way.  I asked what would it have been like if someone could have told us that this is how the year would end.  In that moment I realized that's the feeling you have when you have faith.  You just live each moment, dark or light, with the conviction that the journey is taking you somewhere special.  At that point we realized, damn the reservations, we were going to the top, and that we did.

When we finally returned to the car we learned that the average time up and down is 1 1/2 to 2 hours.  Annie had led us in 45 minutes, round trip.

Cautiously and gratefully entering the holidays

Late, late, late in many ways including posting an update!  Annie had her appointment almost two weeks ago and, while her counts had drifted down some, they basically remained in the normal range and her doctor was only positive.  She also has had to manage dry skin here and there but this is on the best case scenario of GVHD so we're just very grateful on that front so far.

We've been fundamentally changed by this experience and I can't imagine we'll ever rest easy again but, on the flip side, we've learned to be just fine not resting easy.  With thoughtful advice from "team Annie" we requested her immunizations be spread out over time so she only had two shots last visit.  That will continue with two each month until she has received all seven due by this age.

Annie moves forward mostly unconcerned by all this.  Instead she was worried about her first experience with final exams and juggling her end-of-year events.

Thank you for all the support and prayers in 2013 and before.  We couldn't have made it this far alone.
Next appointment January 13.  Hope your holidays are filled with blessings!

Well, George, we've knocked the bastard off!

As of Monday, Annie's ascent to normal blood counts was complete.  And, like Sir Edmund, she was not alone in her expedition.  On this momentous occasion she had the support of over 60 seventh graders who raised $7,600 for the hospital that gave her back her life.  Her classmate A.J., who thought up and organized the fundraiser called "Hoops for Hope," was able to join Annie and present the donation.  Both students got a VIP tour of the facility and a better understanding of how their group's donation would help bring this research hospital one step closer to curing some of the major health threats of their time.

Annie has been blessed by so many special people every step of her journey and our gratitude is boundless.  One particularly poignant moment of the day came when Annie returned, for the first time, to the hospital floor where she lived for over a month.  She received hug after hug from her former nurses as she showed her classmate around the floor.  As we head out she turned to me and said, "you know it's really hard being back here."  I pursed my lips and nodded and then she continued, "because I love it here but I know I can't come back."  It's not just any medical facility that earns that response.

Now that this summit has been reached there is plenty to do for her to get back in the game.  In fact next visit she gets to have her first round of newborn immunizations for the third time in her life.  We'll update then on 12/12.

Approaching normal

Our lives, especially our emotions, have been driven by lab results for so long.  While blood draw days were usually filled with apprehension, once the report was presented, and the results assimilated, there was a period of acceptance and hope that something would change before the next test.

Blood tests don't really have that power over us any more.  Their relative stability and upward trend have provided a sense of confidence and calm.  Yesterday's results were no different.  All normal, with hemoglobin getting ever more close at 11.6.  For the first time we looked at a chart that is part of most "normal" pediatric appointments - where the child falls on a height and weight distribution.  Here too Annie is starting below the curve but, with two pounds added since the last appointment, she's making progress.

Like with the growth chart, approaching normal just means replacing our unusual challenges with more normal ones.  However a silver lining is that we are just so happy to have those challenges.

Next blood draw/blog post now moved out to a month!

Step by step

Annie had another positive appointment yesterday.  All blood counts are normal except for her hemoglobin and that went up from 10.0 to 10.6.  Normal for that will begin at 12.2.  Her kidney functions have all stayed normal so now we don't need to see the nephrologist any more.  Her visits have been extended to every three weeks and she can get a flu shot.  The rest of her immunizations are scheduled for November.  This is an exciting procedure were a group of nurses surround her and all stick her at once.  She has done it once before and it does seem to be the way to go although it looks absurd.  Annie also gained a pound which is much needed.  She has a full plate of activities and goes merrily through her day which has helped build back her appetite.  We feel like a family of wood-peckers because we "knock on wood" all day long for the miracle of each normal day she gets.  Update in three weeks.

Home run

While it sure seemed like we had a perfect storm of bad luck with Annie's illness and all the dominoes that fell from there, today continued our happy progression of good luck.  First was the news that her kidney ultrasound from today showed all was well there.  Next we learned of continued progress with the blood counts.   Whites and platelets still percolating in the normal range and hemoglobin stepping up again to get to 10.0 (normal starts at 12.2).  Her kidney markers that were causing concern dropped almost by half and put her solidly in the normal range.  Unexpected great news.  And finally we learned that her follow-up engraphment test came back with 100% engraphment.  She is now entirely someone else immunologically speaking...weird, weird thought.  This is not to be taken lightly as many aplastic patients never reach this point and some can unfortunately slip backwards.

Annie chugs steadily through her days without pause and has a nice sprinkling of hair coming in.  Tom takes a picture of her every few days so we can make a time-lapse movie of her hair coming in some day.  Life being what it is there are still things to work on.  She's super skinny but at least didn't lose weight between last visit and today's.  The doctor has noted that the road back to physical strength is a far longer one than the time it took for the body to weaken.  She also has very high ferritin levels due to all the blood transfusions.  However when she was last checked for iron overload a year ago the doctor was shocked by the lack of damage compared to what is usually seen.  Hopefully that will give her a leg up but we'll know better in a few weeks as she'll have a full iron panel done at the next appointment in two weeks.  Finally, she has a few rashes that have popped up.  No one is ringing any alarm bells yet but we're keeping an eye on them.  Still, compared to where we've been, we're feeling nothing but gratitude and awe.

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.