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.