How many times has my Father extended His arm out over the waters and invited me to walk – to step out on shifting waters, to look Him in the eye and trust Him, to put one foot in front of the other and put all my hope in Him? How many days have the winds buffeted and the sky seemed angry and black?
I wrote the words above on June 18, 2013. They continue to ring so true. I was prompted to look back at that day because Sten and I received an uncommon, hauntingly beautiful gift today. A strange message in broken English came to us from across the world. Allistaire’s bone marrow donor from her transplant in 2013 reached out to us, seeking to make yet another connection with us, this time in voice, in words, no longer disembodied. Katja. Katja. A beautiful name. I say it again and again, like savoring a morsel, I smile as I say it, gleeful, amazed, surprised, utterly delighted. This is the woman who gave of her bone marrow to my child, who saved the life of Allistaire, whose very cells have divided over and over and over and over for two and a half years to sustain my girl’s life. SHE’s REAL!!! I mean I knew that, of course she was real, is real, but somehow, to know her name, it is gift. And it is gift to have even the smallest means of bowing low before her, to show her honor, to convey my thanks, to cry big silent tears of joy and gratitude for her compassion, her generosity, her selflessness to give, to give to a stranger.
Thank you Katja.
The timing of her contacting us is interesting. I’ve actually been thinking about her, about Katja, this woman who was born in the same small span of time as myself. She and I, two women who have the great mysterious privilege of giving life to Allistaire. You see, if Allistaire is able to move forward to this second transplant, not only will all of Allistaire’s cancer cells hopefully be annihilated, so will Katja’s cells. It grieves my heart. I will mourn the death of those life-giving cells, those cells, those bits of Katja that have done so much for Allistaire – those cells that have protected her from bleeding out by making platelets and the white blood cells to fight infection and those most precious red blood cells who carry oxygen throughout her flesh. I will be cheering on the radiation and the chemotherapy and praying for their utter conquest of her marrow and yet, just as with her first transplant, there will also be loss, also be grieving.
The way forward is still unknown, but millimeter by millimeter we take ground. The week seemed to begin on Tuesday with her brain MRI. Later in the afternoon we were in clinic so she could get platelets and I was eager to hear from Dr. Cooper, hoping to hear that the chloromas were vastly reduced yet again and she was considered in a good position to move forward with transplant. Allistaire was busy with the Childlife Specialists, Callie and Jen, pressing her inked hands against great glass orbs. Having watched Lilly’s hands being placed against those same glass ornaments, I asked Callie to help us with this now, to preserve a bit of Allistaire, for the possible times ahead when it may seem hard to believe she ever existed, when memories of her could blur and fade. It was a uniquely painful and bittersweet moment, watching her joy at doing crafts and yet knowing in my heart why this was happening, knowing what very well may come true. It was in the midst of her cheerful chatter with Callie and Jen that Dr. Cooper came to the door. “Is it good? Just tell me…” He raises his shoulders and lets them slump back down.
The two chloromas in her sinus maxillary on the right and left have decreased both in dimension and bulk but there is a small new 1 X .8 cm chloroma on the right side. All of a sudden, when I least expected it, I yet again had the wind knocked out of me. I shake my head in bafflement, only sort of hearing as Dr. Cooper voices the possibility that this could take the option of transplant off the table. “This could be considered progressive disease…” But, but, but this is the nature of chloromas. This is exactly the sort of disease she’s had for the past three years. But, but, but…I called Sten trying to explain this news, gasping at the thought of there being nothing left. I mean, there are other trials, but we can’t just keep doing this forever. An internal conflict insures, the question of how far do you push, just how far do you go? Is stopping giving up? Lord have mercy. And what does it look like to have mercy? Is mercy finding a way forward, a tiny crack in the granite for the water to seep through? Is mercy a closed-door, a ceasing from struggle? But how? Ever how? How do I take this girl home to die and what would death look like? Because I know I don’t want it to look like those chloromas taking over her face, stealing her away right in front of me, agonizing pain. Oh God, Oh God, I’m going down and all the world blurs with tears and the scaffolding of my flesh feels like it’s giving way. Just don’t give her red blood I think, my breath quick, she’ll just get tired, she’ll just sleep. Yes, that seems the best way, I think, and I walk back to the room, to the room where my fluffy-haired, bright blue-eyed girl smiles her cooky little grin.
My alarm goes off. It’s Thursday morning and I lie eyes wide in the dark, a heaviness on my chest. Oh God. Oh God, what will this day hold? I think of those nights when I would go to bed crying, wake up crying, having to find a way to just will my legs out of the bed, to force my feet upon the floor, to rise and begin and face whatever might come my way. A luxury car commercial playing recently, quotes what is often credited to Abraham Lincoln, “The best way to predict the future, is to create it.” Hah! I laugh a sad weak laugh. Wouldn’t that be nice? It has become abundantly clear how little I can do to create the future I long for. The Christmas songs, taunt and ask, “All I Want for Christmas…” I cry in the store as the song cheerfully plays on. All I want for Christmas? All I want is for my little girl to live, to not die, to not be ravaged and stolen away.
In the dark, I walk through the room to the shower, careful to be quiet and not wake Allistaire who is ever no less than 10 feet from me. I pray, ineloquent, little fits of words, bits and bursts as I rinse out the shampoo, seeking the Lord, turning toward Him, longing to align my heart with His. In weakness and fatigue, falling before Him, not crawling and quaking in fear, but fear of the Lord, a fear that says, Yes, Yes, you are God and I am not. You are God and you are my dwelling place, you invite me into the shelter of your wing. I am weary, I am frail and broken and you draw me to Yourself, you entreat me to come, and I have no strength to walk and somehow my Jesus comes and carries me to the throne and I say, You, You are God and I am not. That is the sum of my prayers. You Oh God have created the future, all of it, the past, the present, the future. You know what this day holds and it is all swept up into the beauty of what you are creating. In You, and You alone I trust most high God, who has come down low to me. You have demonstrated Your grace, Your compassion, Your tenderness and I rest. You are the place, the person in whom I choose to trust. You know this day, Lord, I do not. It is your day Lord. She is your child God. Oh Lord, do not let me go.
My heart slowed as I saw that Dr. Bleakley would be joining our meeting, The Arrival Conference, with Dr. Laurie Burroughs leading our time. Did her presence mean it was all over? Was she here to help convey the hard words that they had decided not to allow Allistaire this transplant because of the new chloroma? It soon became clear that we were marching forward, that this chloroma had in fact caused them to push forward the process to begin the conditioning a week earlier. Dr. Bleakley was there to provide continuity. Dr. Bleakley said that prior to getting these most recent MRI results, she was still considering whether or not a reduced intensity conditioning transplant might be better for Allistaire, given her heart. She said that this chloroma had made it clear that nothing less than the full force of all they could throw at her had even a chance of ridding her of this disease.
“You know Jai, most transplant centers would not do this transplant. There are doctors on our service that do not think we should do it. There are parents who would choose not to.” The night before I had read through the protocol for the transplant and all the details of what could go wrong, of side effects. There were of course the usual side effects – nausea, vomiting, temporary hair loss, fatigue, weakness/loss of strength, fever, loss of appetite, diarrhea, increased risk of infection. But then,words taking up no more space than the others, yet whose weight left me gasping – sterility, brain injury, kidney failure, liver failure, heart failure, multi-organ failure, death. Death.
“[Your child] has been diagnosed as having a fatal malignant disease that does not respond to conventional therapy. Although remission may be able to be obtained for some length of time in a few cases, relapse will most likely occur after a short while.”
Those two faces, faces of two women I have come to know over the years, women in whom I have placed my trust, women who are brilliant, women with compassionate hearts, they tell me “not only is there a chance Allistaire could die in transplant, but there is a very good chance that she will die in transplant…Are you sure you want to do this?”
It feels as if I have always known this, as though all my life I have known about bone marrow transplants and the reality that they are brutal on the body and can kill in an effort to cure. My heart pauses, looking out over the distance, looking out to the horizon, heart heavy and I say, “Yes.” Yes, because we know what will come for her if we don’t try this. There is nothing left. We have at long last come down to this last great undertaking. I had an image in my mind the other day of Allistaire grown, crying and angry, demanding to know why I had not just let her die. I was driving east, away from Seattle, to stand witness at Lilly’s memorial, to extend my hand and heart in solidarity with Heather. Sometimes I look at Allistaire and it seems impossible to me that she has cancer. Does she really have something inside her that will rapidly kill her were it not for the enormity of this intervening? But she looks so alive. But I love her too much. But she is just unfurling all the more, day after day, new delights in coming to know who she is, who she will become. But, but…but all my love and all my yearning for her, all my delight of looking into her eyes and hearing her voice, it is not enough, I can not stop what will be.
Yes. Yes, I understand the risks. Sten and I choose to walk forward, knowing it is entirely possible that we are entering into the last weeks with her. I have to stop myself from thinking it every time I look at her, every time I delight in the sweet curve of her cheeks, the swoop of her nose, her hilarious mannerisms, her perpetual coloring of rainbows and inability not to dance at even the hint of music, of her constant tip-toe walking, her goofy laugh, her tender face that tells me, I love you mommy. I just feel my whole heart shattering in sorrow, my esophagus tightening, threading to cut off my breath. Every joy feels like a double-edged sword, every joy a cutting, the threat of severing. Somehow God just help me to live out this day, to take joy in this day and not let the possibility of tomorrow’s sorrow steal away today.
We left SCCA (Seattle Cancer Care Alliance) Thursday afternoon with the plan to go to clinic at Seattle Children’s later that day in anticipation of her bone marrow test on Friday that would also include a LP (Lumbar Puncture) to test for leukemia in her spinal fluid and Intrathecal Chemo (chemo that goes directly into her spinal cord). But upon entering our room at Ron Don she felt warm and with dread I took her temperature. 101.6 degrees, a clear-cut fever. Along with the fever, there was a strange rash of red spots on her arms and legs. And in a flash any remaining days at Ron Don were swept away. We went to the ER where blood cultures were drawn and antibiotics started. The next day a bloodstream bacterial infection was confirmed, eventually the bacteria being pinned down to a common bacteria on human skin, Staphylococcus Epidermidis. Vancomycin was started and eventually, Vanco-locks as well, which means the nurse inserts vancomycin directly into each of the two lumens of her Hickman Catheter and allows it to sit for eight hours at a time with the goal of ridding the actual plastic tubing of the bacteria, given it’s propensity to grow on such material.
Fortunately, the mysterious red spots went away and she has had no further fevers. She’s feeling great and doing well despite now being stuck in the hospital. We have a sweet room, Forest A Level 7 room 219, a room that looks out over the western end of Lake Washington, that allows a view of the sunset and the Space Needle. If all goes well, she will be in this room for the next few months, with the earliest departure being sometime in February. If all goes well, she will begin focal radiation to the chloromas in her sinuses on Monday, December 28th and continue through the 31st. TBI, which is considered the first segment of conditioning, would begin on Monday, January 4th and wrap up the two-a-day sessions on the 7th. Next would come the chemotherapy, Fludarabine, for three days. A “day of rest,” and then the actual transplant/infusion of donor cells on Tuesday, January 12th.
This all feels so far off and yet it is coming in fast, just as I want the days to slow that I might savor. She has to remain in the hospital the next two weeks in order to complete this course of Vancomycin which ends up coinciding with beginning the actual transplant process. The upside to being in the hospital is that we are able to start tackling the tests and tasks that remain to get her ready for transplant. Three major tests have already been completed: the brain MRI, the bone marrow biopsy and aspirate and the chest CT. The chest CT yesterday showed that the COP (Cryptogenic Organizing Pneumonia) in her lungs has improved, with one spot being completely gone and the others reducing in size. This is a huge relief, as the requirement to move forward was stable or improved disease in her lungs. We should get bone marrow results by the end of tomorrow or Tuesday at the latest.
Tomorrow is a very, very big day. Tomorrow Allistaire will have an echocardiogram and EKG, which feels like her biggest hurdle. The doctors again want to see stable cardiac function. While her BNP (measure of heart distress) had gone down from about 800 to the low 400s, it jumped back up as seen on Saturday morning’s labs. Dr. Kemna explained that a small change in the body and/or heart can produce a relatively big change in the value of the BNP. Dr. Kemna thought Allistaire looked great when she examined her on Saturday and was delighted to report she felt very warm and well profused. So we shall see soon enough. Tomorrow Allistaire will also have a nasal swab, nasal flush and a rectal swab all to test for a variety of viruses. Some of the tests would block her from moving forward and others would simply be for the sake of information gathering. She will also see the dentist to get a baseline of her oral health. Sarah, the physical therapist, will do an evaluation of her range of motion as this can be impacted by the transplant process of being in the hospital and by GVHD (Graft Versus Host Disease).
Thank you to so many of you who have continued to walk faithfully with us on this long road. Thank you for you for prayers and encouragement and Starbucks cards and meals and just for caring, for remembering us.
Tonight our little family of four dwells under three separate roofs. Solveig may never see her sister again. Nobody wants me to say this out loud, nobody can bear to hear those words. I have to live the realistic possibility of those words. I don’t know how many days I have left with Allistaire. But then again, I have never ever known that. I cannot predict the future. But I rest in the One who has created it. Father, oh Father, have mercy, have mercy, mercy according to your perfect love and perfect wisdom.
If you would like to offer the amazing gift of life to someone as Katja did for Allistaire, sign up to be a bone marrow donor HERE