How many times can you hear that your child has cancer?  More than I knew.  But, today when the doctors relayed the news that the issue in Allistaire’s leg bone is definitely a leukemic infiltrate, I rejoiced.  Yes, Allistaire’s cancer is on the move.  Her lymph node in her left arm pit is now noticeably larger and causes her some pain.  It had been kept at bay for the last three months but has now risen up.  And now we have confirmation that it is in her leg.  Yet, all these are not closed doors to transplant.  No bacteria or fungus has grown, and for that I am unbelievably thankful!  There is now in the air a sense of fervor that we must get her to transplant.  I feel a bit of the pressing force of inertia as we accelerate forward.

Yesterday was another long day of no eating or drinking for Allistaire and she did a lot of lying around with intermittent dozing in our arms.  The whole afternoon was spent at the University of Washington Hospital Department of Radiology and Oncology.  Everyone we encountered was very kind.  Dr. Ermoian and his team explained their plan for Allistaire and what we can expect.  Allistaire’s armpit and knee will have proton radiation therapy.  The charged protons will rip through the DNA of the cells and bring about their death.  Fortunately, and amazingly, cancer cells are really not so good at repairing their DNA, especially when both sides of the strand are torn.  Yeah!  So, healthy cells should be able to regenerate, but not the cancer cells.  But this is not as black and white as we’d like.  The location where Allistaire’s leukemia is in her leg is right at the growth plate.  There is no doubt that Allistaire’s left leg will not grow ultimately, to the same length as her right leg; to what degree, no one can know.  And while there should be no real immediate side effects other than fatigue and redness of the skin that is radiated, there is also increased risk of cancer in each area exposed to the radiation.  In addition, her bone will always be a little weaker there and slightly more prone to fracture.  In her back they will be using electron radiation therapy because the area they are treating is much more surface level and they don’t want particles that are as likely to continue on through her body and damage her organs on the other side of the location on her back.  They anticipate it being possible that a bit of her lung, her ribs and part of her spine may be hit.  Where it hits bone, there will again be decreased strength, increasing potential for future fractures.  They are hopeful that because it is such a small part of her lung that could be hit, that we won’t see any concerning issues. Clearly, we are thankful her leukemia has not shown up outside her marrow in places much more sensitive to the damage caused by radiation, but we really must pray that nothing new comes up between now and transplant.

For the radiation simulation, Allistaire was put under and then positioned in a strange blue foam bed that creates a form or cast of her body position so that every thing can be aligned properly between the areas they want to radiate and the settings on the computer.  They simultaneously use the CT scan to provide images of her chloromas inside so they can position her body and line things up.  So now she has some very precisely drawn cross-hair targets on her leg, armpit, and back.  She also has two lines on her torso to help align her body.  We were given specific instructions as to how to keep them safe for Wednesday’s first dose.  Some kids actually have these points tattooed on their body and I suppose they may ask us about it, but they haven’t so far.  All the information and calculations they gathered on Friday will be given to the Dosimetrist who uses the 3-D images of Allistaire’s body to determine exactly how to shape the beams of radiation, finalize positioning and the doses of radiation to be administered.  We begin on Wednesday, May 29th.  She will have radiation each day, except the weekend, and finish on Tuesday, June 11th.  Fortunately we are scheduled everyday at 8am which means an early start to the day but also, not so much hardship from being unable to eat or drink.  Also, Dr. Ermoian told us that fortunately AML is sensitive to radiation, so we can expect Allistaire to have some relief of the pain in these areas.

Our time ended with news we did not to anticipate.  We were given a tentative transplant date.  I was in the bathroom when Dr. Ermoian came by to drop off the radiation schedule.  Sten handed me a piece of paper with a calendar showing all the dates of radiation.  There in blue ink in the little box for June 18th, was written, “Tentative Transplant Date.”  What beautiful shocking news!  To see those words, the words spelling out in blue the event, the action in which all our hope is placed.  Unless God sees fit to intervene with a miracle, a bone marrow transplant is Allistaire’s only hope and there it sat in blue.  The storm has just been raging so long; the wind buffeting my ears and whipping my eyes, but there, there you think you see a bit of light in those heavy steel clouds.  Could it be?  Could it be there far off, the storm is beginning to break just slightly?  Oh, how I hope so, how I desperately hope so.

As we drove back to Children’s Hospital, I spoke with Lisa Getzendaner, a physician’s assistant whose job it is to coordinate the actual procurement of the cells from the donor in conjunction with the timing of the conditioning for the patient.  She has put into action the requests she needs to make with the European registry and we should have more firmed up info by Wednesday or Thursday next week.  So at this point these are all tentative dates.  Given our radiation schedule and the time it takes to make arrangements with the donor, the plan is for Allistaire to begin her conditioning chemotherapy on Wednesday, June 12th.  The first day she will get Clofarabine.  The next four days she will receive both Clofarabine and Busulfan.  Then she will have a day of rest which allows for remaining chemo to wash out of her system.  On this day of rest, on the other side of the planet earth, the donor will have their bone marrow stem cells drawn out of their blood.  Then an airplane will fly over the north pole and land in Seattle.  Within an innocent looking cooler, bags of cells will arrive at the hospital, and be hung on her IV pole.  The lines will connect and in that moment, some other person’s capacity to produce life blood will enter my child’s body, to rescue her, to save her from the certain death that would otherwise come from the final death of her own bone marrow.  Between 80 and 160 million cells will infiltrate Allistaire’s body. Hopefully they will set up shop and start to produce blood cells for Allistaire within 2-3 weeks.  Engraftment typically occurs sometime around day 18.

With mixed trepidation, hope and joy we walk forward.  We cuddle with Allistaire.  We listen to her adorable tiny voice and watch her eyes as she strives to express her thoughts, needs and desires.  We kiss her bald fuzzy head and plant kisses on her wee ear lobes.  We hold her warmth close to us and run our hands across her smooth beautiful cheeks.  We cherish her and soak her in.  We surround her and love her and hope for her.  Father, thank you for every open door, even if it means more cancer.  We continue to walk forward until you block the path and close the door.  Thank you for all the outlandish ways you have provided so far.  We step incessantly into the unknown.  My eyes fixed on you Christ.