Today we walked down that long white corridor, light reflecting up from glossy floors, that tunnel to the Unit, but without trepidation, without terror, without the clamp around the throat threatening to cut of your breath. Today we delighted in the amusing sight we gave the world around us – a little bright flower, a bald girl giggling with the effort necessary to tow the absurdly overloaded wagon and I pushing the equally loaded wheelchair, coffee in hand. The tower of the hospital surrounded in a white swirl of fog made it appear we were entering another world, a secret passage to some Narnian existence. And so it is, we reenter the world so strange, yet so familiar it has become beloved. There a whole cast of friends surround us and an altogether different language is spoken. Creatures of unexpected features are common here – the gorgeous unfettered curves of craniums, luscious curve of cheeks round as grapefruits, hair flourishing in disregards to the confines of foreheads, upper lips, backs or silly breaks between brows, lines swing from chests and poles accompany these little ones, simply one more appendage.
We all know what we’re doing here. We’ve come to slay, to annihilate, to wield weapons of mass destruction. We have come to destroy a destroyer. Ushered down the hall to the very end, we enter our new room, Forrest 7A:308. This is the MIBG radiation room. The room is lined with lead. Two doors, one lead, protect those on the outside from what typically takes place in these few square feet. It is no matter that cancer is merely a wee little cell, it is within its confines that disaster has taken hold and must, must be stopped or its insatiable fury to divide and conquer will force its own suicide. So the poisoning began promptly at 10 am, with joy, with chatting, with laughter, with ease. First the Cytarabine, then the Etoposide and finally the magical potion – blue thunder – which later turns Allistaire’s pee a fantastic happy green.
I slept well last night and was simply ready to get this show on the road. This round, this entrance into the constraints of the hospital this time feels all together different. I walked through that door with hope. There was none of the dread of the last round of chemo. It worked and there is the hope and expectation that this combination of chemo will continue to do the same. Allistaire is full of life and glee and a fair amount of weight packed on to get her through the dip in appetite that will invariably come. Our great volunteers from Side-By-Side (a ministry of University Presbyterian Church) came again today, just as on previous Friday’s. Allistaire cannot get enough of them. When they arrive she is beside herself with silliness and when it is time for them to leave, with her most forlorn face possible, she asks if they cannot play longer.
So we look out into the days ahead, at least 28 of them, looking for what the Lord will lay before us. Let us make the most of these days! Let them fill and swell with all the Lord sees fit. Let us seek diligently to love each face that enters this room. Let compassion and love fill my heart for each nurse, doctor, fellow parent, sweet patient and staff person that gives so tirelessly to care for us. God help me to make the most of the opportunities you give, not disregarding them because of laziness or intimidation or selfishness. We have been placed by the living God into these hallways and rooms for this specific window of time because of His great and beautiful purpose. Yes, we are here to walk through each step to fight for Allistaire’s life and we will, I will! But Lord, help me to keep my eyes open and my heart willing to every open door you given and fill me with your Spirit that Your love, Your light, Your hope can overflow! That is my joyous hope. This is what invigorates my spirit. Let me not deprive myself and others of the bounty that He intends!
For those of you who pray for our days, pray for these things as eagerly as you call out to God to heal Allistaire! You know what I want to see God? I want to see you raise the dead! I want to see you raise the dead cold heart of stone and breathe life into dry bones in the wilderness. That is the miracle I’m asking for! Do you hear me God?! I am calling out to YOU the Ancient of Days, you who tarry only because you want that all should know the eternal, abundant life you are holding out to each of us through the sacrifice of Christ. Father, who am I that I should lay down my life, what is my life, but Lord I do, I do! I say yes to whatever you have for me because I know my suffering is temporary, it is short, it is light and I am asking for the ultimate pay-off: that other’s should have eyes to see you, that people would be drawn to your irresistible beauty and magnificence. Oh Lord, you know how I love, love your otherness, your ways that are not our ways, your good that surpasses our comprehension, the paradoxes that so enamor – oh that others could see you for who you are. And Father, show me more of yourself, more, more! I want to see new facets of your face, new angles of light, even shadow. Lord, you are all together beautiful. May I greet each day with this deep, swelling joy.
It has been nearly three weeks since Allistaire and I left the hospital. I didn’t want to leave for fear of all the inevitable exposure Allistaire would have, but it has been a wonderful break. It is SO great to have not one person walk into your room at night, to stagger to the bathroom in disarray with no regard to modesty. Sten and Solveig came out for a week over Christmas and we had such a great visit. The girls played and played and played and giggled ceaselessly. They have such a better time interacting outside of the hospital, without all the constraints. Uncle Jens and Aunt Jo also came out for a visit from Bozeman. We made the most of good weather and went to various play grounds as often as possible. Friends of a friend were out-of-town for Christmas and allowed us to use their home which made it possible to cook Christmas dinner and be together with my parents. All in all it was all we could possibly ask for with our time out of the hospital. It wasn’t home and that’s a bummer, but boy did we love the freedom.
This is our second 39 day round of chemo, identical to the last one. She will have three different chemos each day for five days and then it is simply a matter of her blood counts dropping and eventually recovering. Twenty-eight days is the standard estimate of how long this drop and rise process takes. Day 28 will be February 5th. There’s nothing magical about February 5th, it’s just an estimate. Once her ANC gets back up to 200, she will have a bone marrow biopsy and aspirate, another PET/CT, echocardiogram and an EKG. I will include below some pictures of her last PET/CT. I believe the one that is just a white image is from the CT and the one with reds, yellows and oranges is the PET scan. The computer overlays/combines the CT and the PET scan giving more complete info. And in reality, there are many, many different images because they are like horizontal slices of her body, not simply one top-down view. The brighter the image on the PET scan, the more metabolically active is that location. There are many bright spots but that is because there are numerous places in the body that are metabolically active when given the infusion of glucose, but the cancer cells show up differently and in locations that would not be expected. They use this scan in combination with the CT which shows physical masses to get a clearer, more detailed idea of what is going on with her chloromas. I mentioned before that they are not sure that the spot on her left hand is actually leukemia because it has remained the exact same as the base line scan. I just learned in our clinic appointment, that this idea is also supported by the fact that there is no corresponding lesion showing up on the CT. They think that the area of brightness, which is in the web space between the thumb and pointer finger on her left hand, may actually be due to her thumb-sucking immediately prior to the scan. I have asked that they do whatever necessary to really sort this out because I would really like to avoid focal radiation to her hand, which could deform the bones, if it is not clearly necessary.
Once this testing is complete, she is nearly ready to begin conditioning for transplant which includes radiation and chemotherapy. I am not sure if there is additional testing that needs to be completed. Were she older she would have to complete a pulmonary test to determine the health/strength of her lungs. Of course there are various blood labs that look at organ function such as that of the liver and kidneys, but this would already be done routinely. There may also be some period of time where they want her blood counts to recover more. I believe her ANC would ideally need to be 750, but in reality, they would only estimate how long this could take and calculate that into her schedule. I anticipate hearing from Dr. Gardner sometime in the coming week more details on timing. She said she wanted to discuss with Dr. Bleakly (the transplant doc whose trial we are hoping to have Allistaire participate in) and get a schedule on the books. It is exciting to step nearer to that mighty goal of transplant!
