Tuesday, September 2, 2014

Trip to Seattle

Chemo or Transplant?  Chemo or Transplant?  We've spent a lot of time this past month going back and forth between the two, ever since they became somewhat equally viable treatment options.  But we've tried to carry the weight of this decision in all the wrong ways.  Have you ever lifted weights or worked out by focusing on just one muscle group while completely excluding other ones that deserved attention?  What makes us do that sort of thing? Why is it so easy to take that route?  We let the importance of one area of life completely take over, leaving us with little energy in areas where it is also needed.

I'm so thankful for what my cousin said to me.  "Mike, that's not the type of decision that rests on your shoulders.  When it comes time to decide, it will already be made for you.  And whatever choices that you do need to make, you are doing so with nothing but complete love for your daughter. So you can do no wrong."

That conversation was the start to feeling a whole lot lighter, and each step has finally seemed to gain a foothold amidst all the motions of chaos we have been experiencing.  What kept that good trend going was last week's trip to Seattle, which helped remove a few more of those 45-LBS weights off of the one side of my neck.  (That's where all my tension seems to go.)  

Going to the Seattle Cancer Care Alliance (SCCA) meant taking a couple days away from my family, and I found myself developing a different habit of going back and forth.  Every time I picked up my phone, I would spend time going from my wallpaper photo: (Ava at around 2 yrs old)



Staring at this picture for awhile, I'd then flip over to a newer picture that I display on one of the 4x4 panels of my android phone: (Ava and Gwen eating roasted marshmallows during our recent Light House Family Retreat)


Going back and forth between these two pictures...  I just kept doing this throughout my entire trip, usually smiling, sometimes getting choked up, oftentimes zooming in on these glorious faces that would own my attention and make me forget what I had initially grabbed the phone for.

But as I headed into the consultation appointment with one of the SCCA's transplant doctors, I entered the room having known only of the grim details involved in a transplant. Up to this point, Ava had been a cancer patient with a possible need for bone marrow transplant.  Our learning of BMTs progressed very slowly, and I had allowed only pure negativity to influence my thoughts regarding a transplant.  There were doctors who had tried before to explain it to us.  But in our eyes, they weren't proposing a life-saving procedure, or working endless hours trying to improve upon this breakthrough in medicine.  To us, they were individuals draped in darkness who worked in the field of hopelessness.  Nothing anyone could say about a BMT would make a decision for transplant a positive one.  I would find myself thinking, as I have many times before, "We are in such a good place right now.  Let's not go and spoil it with something too drastic."  

There's never a wrong moment to tell you that I owe you my deepest and sincerest gratitude for being with us at any and every point during this journey.  You have given us some of life's greatest moments this past year while fighting Ava's leukemia.  In the midst of her failing health, I have often thought, "We are in such a good place right now."  The power of your encouragement has often moved us safely beyond the harm of our trials.  Thank you, ALL, so much.

When aiming my sights to Seattle, I came across a doctor's profile that, among many other lists of interests and accomplishments, was: 1) her concentration on helping children without a perfect bone marrow match, 2) dealing with children of mixed ethnicities, and 3) pioneering a breakthrough that would address the problem of stem cell shortage during the patient's recovery process.  These were all things that I felt spoke very directly to Ava's greatest challenges.  Could a phone call and an e-mail to her be the start of overturning some of the ominous boulders that had blurred our vision of what a BMT is all about?

Even though this doctor was at the end of her two-month season of patient care (much of the year for her, I believe, is devoted to advancing her research), she made sure that not only could we meet for a consultation, but that she would oversee Ava's roughly 4-month period of transplant care.  By the time we were face to face at SCCA, and with Esther on speaker phone, we had over a page of questions to go through.  But when the conversation was nearly over, we didn't have to ask the doctor a single one of them, because I saw that she had thoroughly answered all of it through her own desire to share with us what we needed to know.

There's a lot of technical information to back up what I took away from this visit.  That if transplant is to occur, I have great hope that Ava will have a successful one.  This stands in stark contrast to where I was previously.  Before, there was only great fear.  Today, I feel like we have been repositioned in this battle.  We have the opportunity of experiencing a medical procedure that may one day help save many lives.  In a BMT, there is a 26 day period of recovery that causes this procedure to be so dangerous.  During that time when the body is without a functioning immune system, the the slightest of health complications pose a serious threat.  But an extra infusion of stem cells can be used to reduce this critical period of vulnerability by providing a momentary defense system.  It's like a temporary shield until the new ingrafted bone marrow can do its work. These much needed stem cells can be made available because of a new program to expand or grow them right inside of a laboratory.  For a BMT patient who receives expanded stem cells, his or her recovery time may be reduced to just 19 days, which is a huge achievement.  The hope is that these results can one day be used to help serve a wide range of situations where one's health has been severely wiped out due to internal or even external hazards.  Since these methods have now been moved into the proving grounds, it's a procedure that Ava could be added on to her transplant by randomized selection.  Aside from the chance to receiving expanded stem cells during recovery, what is also reassuring is to know that a cord blood transplant would be the best kind of BMT for Ava.  Having no perfectly matched donor, the risks would be far too great, especially with her history of severe allergies.  But she needs a cord blood donation to be just a 4 out of 6 match, which I was told is pretty much a sure thing.  For these and many other reasons, our view of the transplant procedure has been dramatically altered.

But in addition to that hope, I have also spent the ensuing days with a deep heaviness mixed in.  From the consultation, it became unavoidably clear that the intense conditioning process in a transplant brings about the certainty of infertility and lifelong, periodic screenings for secondary cancers and the risk of gradual failure to other organ systems.  In other words, a transplant will make it medically impossible for Ava to bear children, and she'll have to make regular visits to the hospital as though she were already in her late, "high-risk" 50s.  

So I'm back to this idea of going back and forth.  We are still not sure if and when to initiate the cord blood stem cell transplant.  We need so much prayer and for God to strengthen us with courage from the Holy Spirit.  We don't know why we were given this amazing privilege to serve as one of Ava's lines of defense.  But courage is needed to prolong chemotherapy, because we don't know if chemo alone is just prolonging a vengeful relapse that becomes even harder to deal with down the road.  Or if we have reached the end of chemo, then courage is needed to embrace the lifelong physical challenges that a life-saving transplant comes packaged together with.  So until any change takes place, we'll be swinging like a pendulum.  But we finally seem to be moving forward with more confidence these days, and we are presently hoping for the following developments:

1) by starting the cord blood donor search, we want to find at least two 4/6 matches (or better)

2) in reaching out to others who have fought pediatric biphenotypic leukemia, we hope to make one solid connection (or more)

3) to reach MRD negative at the next bone marrow test in about 2 weeks.

Again, we have not made the decision to go to Seattle just yet.  We still plan to visit Cincinnati Children's Hospital hopefully next week.  I've also heard that the University of Minnesota and Boston Children's Hospital are just as great.  But we're also learning to accept what our role as parents is, and to accept the limitations we have.  So Cincinnati will probably be the only other hospital we visit.

There are so many people to thank, and I know I would be unintentionally and badly dropping the ball.  It was awesome to stay with my Uncle Sam and Aunt Nancy in Kent.  It was great to reconnect, however briefly, with Caroline, Andy, and Joelle, and to know that we have them and many more of our sweetest friends and relatives in the Seattle area if we go to SCCA.  We thank a friend of Patty's, who rented a car for me so that I could get around Seattle more easily.  Thank you most of all to Esther and Patty, who have worked to keep our family's lifeline of support continuously fresh through this blog, through Facebook, and just the way they have made our family a magnet for your prayer and encouragement.

Also, we have greatly enjoyed all the cards, video recordings, recorded jokes, and more for Ava.  She recently got a Hello Kitty boom box for her birthday, and I thought it would be really sweet for her to receive personalized cd's from anyone who has songs or recordings that she would enjoy.  Ava has shown a high level of appreciation for one's honest efforts at expressing themselves through music.  I recently played a song for Ava that got a lot of criticism from virtually all circles of society, just to get her opinion on it.  It was Rebecca Black's song, "Friday," and Ava's comments were, "She did a GREAT job!"  We've been singing it ever since.

You are all God's best to us, and we have long been rejoicing in the love reflected in thousands of ways through the course of our recent difficulties.  Although we look forward to a distinct end to these trials, they now seem to come from a part of life that is more commonplace than we have ever been able to recognize.


"No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it." (1 Corinthians 10:13)

Thank you for standing with us.

Our Love to You All!

2 comments:

Anonymous said...

Hey Mike,
Seemed like not too long ago you and Esther were just at TLC with us. Many of us are proud and blessed to know you and family . At this challenging time, you and your family are in our constant thoughts and prayers. As you take the next difficult step/steps in your journey, know that you all have a big network of devoted friends/family and each of us in our own way is bearing a small share of it.
love, SK, Jeff and folks at TLC.

Jamie Morgan said...

That is a very difficult decision. I'm praying that God gives you wisdom and clear direction. Jamie Morgan/KoreAm Journal