Sebastian and ... Signing Off

It has taken the efforts of many, many people for Annie to be alive and enjoying robust health today. From the literally hundreds of people who donated blood and platelets, to the efforts of dedicated medical professionals, to the patients, families and professionals who came before Annie, to the constant support and prayers of two school communities, several parishes, neighbors, friends and family.  However there has been one critical player who, by the rules governing international bone marrow donations, has been anonymous for two years.  The man (and his lovely wife) who agreed to give up a week of his life, health, comfort and responsibilities to share his body to help a person he knew nothing about.

In the last few days we have had the immense pleasure of first, learning the identity of Annie's donor and then, discovering that he is every bit the wonderful person we imagined he'd have to be.  Above is a picture of Sebastian and his daughter Anna who was born to him and his wife Mascha only two months after he donated for Annie.  Sebastian, Mascha and Anna live in Germany near the border between Belgium and the Netherlands.  They are expecting a second daughter this September! Sebastian is a project manager in the telecommunication's business and just last week turned in his thesis for a degree in business informatics.  All that plus a great immune system - in fifteen years the only time he had to take a week off work for health reasons was the week when he donated for Annie!

Years ago I had given up on a happy ending for Annie's medical journey.  We adapted and learned to find happiness and meaning in moments along the path instead of any desired destination.  In fact, several times over the past decade, I had imagined attending her upcoming graduation ceremony from her K-8 school to see only her beloved classmates graduate.  It is still hard to believe this is all real but I have this blog to confirm it.  However now it is time to end this blog after all it has a happy ending! It's time for Annie to move on and face all the joys and challenges a full life affords.  We hope and encourage that she never forgets to honor all that has been done to help her.  Thank you again to everyone who helped us this past decade, it has taken a global village.  One last thing.  I'll end this blog the way I began it, with a picture of Annie and Katherine, only this time they are joined by their first pet ever. Today they brought home Toby who will accompany them as we all begin our next chapter :)

Slipping Away

Well I'm embarrassed to open this blog and see that I am three months behind in updating.  No news is good news though.  Annie has continued with robust, full health and just finished her two-year post transplant round of system-checks.  She also has a few immunizations left to go.  In her daily life she has been able to resume activities that were put on hold for almost ten years.  She tried skiing again, played on a sports team and went on outings without medicine and close supervision.  We're even ready to try adding back into our lives two things that had to be removed during her immunosuppression - houseplants and a pet!

Her illness and treatment have taken up so much of her childhood that we welcome the chance to just let it slip away.  However we don't ever want to forget all for which we are grateful and we each find ways to continue saying thanks for the great blessing of her recovery.

Hopefully my next post will be to share the outcome of our attempt to contact her donor.  With the passage of two years on May 18th we'll be able to write a letter to her donor and see if he'd like to be in contact with Annie.  Hopefully it won't take another three months to report the news!

Growing

Annie had another appointment with normal blood counts and a shot of immunizations on the side.  Doctor visits are becoming the more routine part of life with Annie while having a teenager is the more challenging part.  As I oft bemoaned during particularly difficult parts of Annie's illness, having bad luck doesn't then mean we get a pass on other tough stuff.  However it is nice to not have both the trials of her illness and having a teenager.

Annie has been able to experience team sports for the first time in nine years.  It was joyful and quiet funny to watch her play basketball at a level you'd more expect from someone younger.  She dribbled the ball in the wrong direction, didn't know what to do during the "good-game" high fives at the end of the match and relished each moment she got to be in the game.  Annie also has regained her weight, height and hair as shown in this time lapse video.  Next appointment in February.

Moving On

Yesterday Annie hiked up two and a half miles carrying a 20-pound pack to camp overnight with Tom.  While they began today away from it all, in the afternoon Annie had another milestone check-up planned.

This year-and-a-half post transplant check up was not a good one for us after her first BMT.  It was at that appointment that we learned the success of her first transplant turned to failure and that her body again was being shut down by aplastic anemia.  But today, seven years later, she hiked down a mountain side to receive a clean bill of health.  The thought of it is every bit as sublime as their sunrise view.

We keep climbing towards our next pinnacle - hopefully connecting with her donor in May.  Until then her next appointment is in December for more vaccinations.  Thanks, as always, for the prayers and support that made this day possible.

A Disney movie moment

Annie began the day of her every-two-months doctor's appointment at 4:30 AM.  She had to rise early and get to Disneyland in time for her first 5K.  We had run this race three years earlier (and many since) with Katherine but Annie's health always kept her at home.  In fact nine years of low platelets and hemoglobin have kept her away from most athletics besides dance.

Still in the dark, the runners waited to cross under the start gate into Disneyland and Tom couldn't help but well-up.  This was a moment he never thought he'd have with Annie.  But just a year after her second transplant it happened and she beamed every step of the way.  As they came around the first corner there was the Cars' Land mesa lit in splendor against the dark and Annie reached out and squeezed Tom's hand as they ran.  Cars was a movie they had watched many times during the long hours it took to receive blood transfusions.

They whooshed by favorite ride after favorite ride as the runners had the park all to themselves.  When they approached the first mile mark it flashed 11-minutes.  Tom had secretly hoped they'd keep a 12-minute mile pace but Annie was going strong.  Again and again she would reach out and grab his hand as they relived cherished memories of park visits.  They would go to Disneyland together to help soften the blow when she couldn't attend school trips or parties that she wasn't in shape to attend.

Mile two slipped past them this time in the 10-minute mile range.  The sun came up and the crowd thinned out as other racers dropped behind.  Smiling and rejoicing they ran steadily through mile marker three again around 10-minutes and then they crossed the finish-line at 32:59!

Annie proudly shared her news with her doctors at that afternoon's appointment where she again enjoyed healthy blood counts and got a pass to start her last year at her K-8 school without any of the restrictions from the prior eight years.  What a day.

The pharmacy is now closed

One thing that surprised me most about a bone marrow transplant is that it is almost entirely done by medicines.  "Transplant" used to make me think of something surgical but in this case most of the skill comes from potions.  

At Annie's last appointment she was cleared to go off the immunosuppressive medicine she has been on for almost nine years.  A twice daily, constant reminder of the sword under which we lived.  That medication was only the tip of the iceberg as you can see from all the containers above.  These are the  leftover medications we'll be bringing to the hospital for proper disposal at her next appointment on August 28th.

Brave new world.

First Anniversary - Putting it in the rear view mirror

I'm finding it hard to sit down and update about Annie's journey.  Odd since things have not been this good for her/us in seven years.  Odd since every day feels like a miracle compared to where we were a year ago.  Odd because she passed her one-year battery of tests with flying colors.  Odd because she had the wonderful honor of playing her ukulele while singing "The Rainbow Connection" to an audience of survivors and their medical teams just one year from when she played it to an audience of three while in isolation fighting for the honor to be a survivor.

Maybe it's because we lost a fellow traveler since our last posting.  Not every kid makes it.  Many of the people whose lives furthered the science that saved Annie did so without their lives getting furthered.  There are many, many angels keeping us aloft.

Maybe it's what a cancer survivor friend meant when she shared advice she'd been given.  "It's all about getting it into the rear view mirror as fast as possible," she was told.  So much of our lives have been structured around her illness that it's such a treat to just let it slip away into the past, at least for a little while.  But then there are parts we don't want to let go.  Silver linings that are still precious.  I's still to be dotted and T's to be crossed.  The story isn't finished.  There is still medicine to be tapered, hair to be fully grown back and a few more immunizations to finish up.  Then there is the huge realization that a year from now we have the chance to contact the person who shared a part of himself to save someone he knew nothing about.  There is more to be written.  So the posts may get shorter and later but we'll finish this travel log until reaching that destination.

Voice Change

Another positive appointment yesterday... normal blood counts, more round-two immunizations and more managing minor issues.

Being immunosuppressed has been Annie's reality for over seven years.  Twice-a-day she takes medicine to suppress the very system that keeps most of us alive, yet was killing her.  We've worked hard to keep her healthy through diet, cleanliness and lots of sleep.  For the most part she has been spared little illnesses although skin issues still sneak through.  The process of tapering her off these medicines has to be slow or, as has happened before, risk relapse.  I believe the risk of relapse is more an issue when non-transplant means are used but care is in order no matter what.  Starting next visit, her one year visit, the dosage will begin to get reduced.

In the mean time another immune function is returning, her tonsils.  Chemotherapy sends the tonsils into retreat but they have been growing back and are resulting in some temporary changes in vocal tone that apparently I am most "tuned in to."  This just feeds our running family joke about Annie being mistaken for a boy.  For the most part she has kept her sense of humor and just rolled her eyes when in Hawaii she and Tom were handed the kukui nut necklaces while Katherine and I got leis.

Next appointment is May 22nd and will be a full day of testing to see how everything is running a year out from transplant.

5-year Diary

Another routine doctor's appointment.  Blood counts normal, got a round of immunizations, Annie asks when she can have a pet....  In fact things are so routine that I just forget to update this blog.  I am sorry for making Grandma worry!  Annie has been busy with 7th grader things like lots of homework, friends and extra-curricular activities.  Annie was in the chorus of our high school production of EVITA and later she and other chorus members sang some of the songs for her school's talent show.  A little bit of it is in the video above.  She is the singer holding the low note.

Last year Annie gave me a diary where you record a few lines every day on the same page every year for five years.  What a difference a year makes.  A year ago last week I was writing about epic bloody noses and day long transfusions requiring multiple pokes.  This year I wrote about the trip we took last week to Yosemite and all the hiking we did - the longest hike being seven miles.  We are quickly approaching the one-year mark from transplant which will signal the time when Annie can begin tapering some of her medicines and some lifestyle restrictions begin getting lifted.  Next appointment April 14th.

Chugging along

Annie is literally chugging along right now somewhere in the Sierra-Nevadas.  Her appointment Thursday went well with blood counts continuing in the normal range and two more immunizations under her belt.  Soon after that school went on vacation and she and Tom headed off on an adventure.

It has been interesting readjusting to the challenges of a healthy 7th grader.  The skills and attitudes necessary for success in that are not all the same, and sometimes at odds, with the ones needed to fight a life-threatening illness.  With her medical challenges it was all about keeping jovial and preserving a positive sense of self but now it's more about settling down and doing for others.  I was happy to see her reading however not long after I was sent the following video...clearly there is still a lot of mischief in there.  Next appointment March 17th.

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.