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.