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IMG_2733This morning I spent nearly an hour on the phone with Lisa Getzendaner, the Unrelated Donor Coordinator, getting a lot of information on the road ahead.  I am daunted by the incredible number of details that all have to fall in place.  It really feels like we’re on a bullet train, speeding toward our destination of transplant, with a frightening number of steel gates currently down across the rails.  They may open.  They probably will.  Lisa has twenty years of experience with this work and I have confidence in her abilities to coordinate the massive endeavor before us.  The gates may open, but the thing is, every single gate must open to get where we so desperately need to go.

Allistaire came to the ICU because of a severe infection in her gut.  A few comments in recent days have opened my eyes to just how serious her typhlitis was.  On our behalf, the resident asked the surgeons if Allistaire could start having some little bits of ice.  When she brought back the answer that she could indeed, she also brought news that the surgeons were surprised that Allistaire was able to make it through this gut infection without needing surgery.  I knew that for them to operate on her would have been extremely dangerous given her complete lack of white blood cells, so to hear that they really thought she would need surgery impressed upon me the danger she was in.  When I relayed this perspective to Dr. Gardner, she stopped and looking me in the eye, said that the way Allistaire’s colon looked on the first CT was the worst she’s ever seen.  She sure did a good job of not letting on about how precarious her condition was.  Apparently, had her bowel perforated, a likely uncontrollable infection would ensue.  This is in fact how my grandmother, Lillian, died.  She died fast.  I sat in a plane on the tarmac in Atlanta, trying to get to her, when she died.  I am now much more aware how optimistic my assumption was that she would make it through this, that she would be fine.  Thank you Father that you preserved her life.  Thank you to each of those donors who took a serious chunk of their time to donate their granulocytes.  Thank you amazing team of doctors who so expertly and rapidly diagnosed the likely problem and initiated an aggressive and effective plan to support her little defenseless body through this sepsis shock and resulting tremendous insult on her heart.

Now that her typhlitis is so wonderfully on the mend, Allistaire’s primary issue remains her heart.  Dr. Gardner talked to Dr. Bleakley, the transplant doctor, who said that her ejection fraction must be 45 or higher in order to be approved for the transplant protocol we so desperately hope for.  Since her last echo that showed an ejection fraction of 23, the team has continued to carefully monitor her fluid intake and output, adjusting everything from the concentration of meds and TPN, to giving and timing lasix to pull of more fluid.  They are doing everything in their ability to ease the burden on her heart.  As Lisa said, if her heart function doesn’t improve enough, this “could be a show stopper.”  She has continued on Milrinone.  Thankfully, her BNP (a measurement of heart distress) has been trending downward and was 583 this morning.  A normal BNP falls in the range of 0-90 and hers started at 2350 from the first time they checked it.  Additionally, her SVO2, which is the level of oxygen in her blood that returns to her heart after circulating through the body, has risen to 80 which the attending doctor told me this morning is perfect.  “Perfect,” I have not heard that word used describe almost anything with Allistaire lately.

The general plan is to keep Allistaire on the Milrinone until her blood counts have recovered in order to provide optimal blood profusion to her gut, thus aiding healing.  We will also wait until count recovery (ANC of 200) before allowing anything to go into her stomach.  It will be a process to get her gut working and her eating well enough to provide her the necessary calories and thus to come off the TPN.  It is very possible she will get a feeding tube given how small her stomach will have shrunk.  The feeding tube would allow constant low level food.  This is a bit of a bummer for me as we have managed to keep her off a feeding tube since she was diagnosed.  Oh well, something else new to learn.  Her blood counts remain in decline.  Today she is getting platelets (which she seems to need every 2-3 days) and red blood.  Her white blood count remains zero.  Today is the 17th day of zero white blood cells despite getting daily GCSF shots to stimulate her marrow to start producing cells again.  I sure hope her marrow perks up soon because so much of her healing depends on her ability to heal up with the white blood cells.

Regardless of these challenges to overcome, planning out the details and timing of her transplant must proceed.  Allistaire will be transferred to the BMT (Bone Marrow Transplant) service on February 17th.  I will have an Arrival Conference, the next day on the 18th.  The purpose of the Arrival Conference is to review the process before us, what we know about Allistaire and what testing still needs to be completed. Then for the next two weeks, a great deal of testing and evaluation will take place to determine if Allistaire’s disease and overall health is stable enough to move forward with transplant.  She will likely have a bone marrow test February 19th or 20th.  Once all the data collection is complete, there will be a “Data Review Conference,” on March 3rd or 4th.  Assuming everything is in order and we are able to proceed, Allistaire will begin conditioning on March 9th.  This will involve 4 days of TBI (Total Body Irradiation) in which she is sedated and radiated twice each day over at the University of Washington which is just a few miles away.  She will then have five days of chemotherapy which includes 5 days of Fludarabine and two days of Thiotepa.  There will be one day of rest and then the actual transplant, the infusion of the donor cells, is set for Thursday, March 19th.

March 19th feels so far away.  This whole process is taking a month longer than I had ideally hoped.  Yet this may be for the best as it gives Allistaire lots of time to recover.  Her heart, marrow and gut have been severely injured.  This morning the new attending Hem/Onc (Hematology/Oncology) Dr. Hawkins, reiterated that Allistaire’s typhlitis was very bad.  The timing is being dictated in large part by the openings available in the radiation schedule and apparently the T-cell manipulation “takes such a huge amount of resources,” that they can only schedule one per week.  This time will also allow for finalizing details of payment for transplant.  Because both the transplant and the subsequent modified T-cell immunotherapy we hope her to have after transplant are Phase 1 trials, Lisa said she would be “flabbergasted,” if Blue Cross Blue Shield approved them.  It looks like our hope rests with Washington Medicaid and ultimately Social Security Insurance based on the view that Allistaire’s cancer constitutes a disability due to her long time hospitalization.

Behind it all, however, is the promise that should all else fail, Seattle Children’s Hospital Foundation will cover the cost of these trials.  This boggles my mind.  Her last transplant cost $1.1 million.  Sometimes I shudder at what Allistaire’s care has cost.  I look at my one beloved child and know she is not of greater value than each of the thousands of children who die every day in developing countries.  It is not fair that so much is given to her.  The Super Bowl helped add a little perspective.  Thirty seconds of Super Bowl advertisement time costs four million dollars.  That’s about what it has cost to keep Allistaire alive the last 3 years.  She is not worth more than the thousands of children’s lives that could be saved by four million dollars, but she is sure worth more than a measly 30 seconds of TV add time.  What a world.

Another steel gate is in the hands of the donor herself.  She has to consent to both the large volume of cells needed in order to complete the depletion of the naive T-cells for the transplant and for the genetic modification of the T-cells for the trial after transplant.  She has agreed to donate and has agreed to the time frame requested but she still needs to give these specific consents.  There is not one single thing in the universe I can do to impact her decision.  In a stringent effort to in no way coerce the donor, this woman knows absolutely nothing of Allistaire’s condition, her age, the severity of need – nothing.  So many gates barring the road before us.  Most of this post was written yesterday morning long before results from Allistaire’s echo came in.  The day ebbed by at a painfully slow pace.  I felt I could not leave the room because at any moment the cardiologists would come in with news of her heart.  Yesterday the weight of sadness lay heavy.  Day became evening and then night with still no word.  The nurse graciously harassed the resident in hopes she would in turn harass the cardiologist for results.  Corrine, the resident, came in just before 9pm beaming once again.  She made the cardiologist repeat himself several times to be sure she heard the number right.  “The ejection fraction is 45,” she said with nearly uncontainable smile.  FORTY-FIVE??!!!!!  “That is the exact number it has to be for her to move forward with transplant,” I told her with laughing, shocked joy.  God, who are you?  Really who are?  I know your face is just beaming, beaming with joy, with delight to bring us delight.  So what you’re saying, Lord, is that you have her in your hands?  What you’re saying is that this is not hard for you?  We need 45, well here’s 45.  Thank you Lord, Thank you.  I think we were all flabbergasted at that incredibly glorious number.

It has been 19 days since Allistaire was transferred to the ICU, quite a bit longer than I had ever guessed we’d be here.  This is not how I envisioned this round of chemo going.  The funny thing is, just two days after her chemo, when she was detached from her IV pole and it seemed we had three easy weeks ahead of us, I thought, “God, this is what you have for us?  This seems too easy.  We never have it this easy.  Three weeks just to hang out and wait for her counts to come up?  Well, show me what you want this time to look like.”  Two days later she was in the ICU.  Today was a delightful day of progress.  The morning began with the removal of the NG tube in her nose that was used to pull out any stomach contents.  Then through immense protest and fear, the IV in her foot was removed.  These days she is literally terrified if you come near her with anything.  She knows she gets a shot every night and has had many painful experiences in the last two weeks.  Even her bath elicited cries of, “I’m scared, I’m scared.”  It was her first real bath in nearly three weeks and now she smells lovely and her cranium is extra shiny.  Lastly, we changed her dressing.  I am thankful for so much progress and the opportunity to get her up and trying to walk again.

The top picture is one Solveig drew last Tuesday after doing FaceTime with Allistaire and I.  This is Solveig’s view on Allistaire’s world.  It sobers me.  I’ve also included some fun pics from a joyous weekend recently that my two sister-in-laws, Jess and Jo, came out for a visit.  My mother-in-law has been here this weekend, giving me some nice breaks and enjoying time with Allistaire.

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5 responses »

  1. My boys and I have been praying for Allistaire each and every night. We will continue to do so!

    Lamentations 3:22-23 The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.

  2. 45! What a great gift! Our family is praying for Allistaire! Thank you so much for your updates. Praying for strength for both of you. I love the pic of AllIstaire in the green hat. Through all the pain, she still has some smiles- that is a joyous sight.

  3. Jai,

    You probably don’t remember me but I shadowed one of the BMT PA’s that was taking care of Allistaire during her last transplant. Your little gal was so precious when I was there on rounds and she just wanted to play dress up in her princess high heels that were about 5 sizes too big even though she had no idea who I was. 🙂 I’ve been following your story even since then and although my heart aches for you, I’m continually inspired by your faith and your perspective, even in the most trying of times. Because of that, your family’s story is impacting lives of people that you don’t even know exist. That is powerful. I am now in PA school and want you to know that babies like yours are what motivate me to push through the hardest of weeks.

    Thank you for sharing your journey and know that you and sweet Allistaire are covered in constant prayers.

    -Morgan Cooley

  4. I’ve got a few days left until I go in for BMT. I have AML/CMML. I hate to see a child go through leukemia. I pray God will heal Allistaire and guide the doctors in their work.

    “Psalm 28:6-7 Blessed be the Lord, because he hath heard the voice of my supplications. 7 The Lord is my strength and my shield; my heart trusted in him, and I am helped: therefore my heart greatly rejoiceth; and with my song will I praise him.”

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