A time between times. A place between places. The Bridgers fill the expanse, stretching miles and miles wide before me, foothills reaching out toward the greening valley floor, ridges and draws white with snow echoing lazy clouds above in that bluebird sky.
I’ve already hugged and kissed Sten and Solveig goodbye. I have yet to return to Allistaire, to take in her giggling little voice, to feel the smooth warmth of her still bald head.
Six days at home. A home that is home and yet stranger, a home that holds my heart, that taunts with its wonders of ordinary life, pulling the warm clothes from the dryer, matching socks for Sten and Solveig, clothes that encircle the bodies of the other half of my family. Washing dishes looking out the window at the Spanish Peaks, passing the coats in the mud room where wood smoke still clings its heady scent. Waking to the rush of wind in trees, bird song and the looming form of Sten still asleep next to me. Lying down at the end of day with the glitter of stars, from horizon to horizon, faint and bright, haze of star cluster, fiery white bright of planet. Hills turning from doe to fresh green, drawing the deer in dozens, their forms scattered on the grassy slopes morning and evening, their eyes luminous in darkness of night. Waving to my mother-in-law as I drive down Bridger Canyon Road and she drives up. Seeing Jess on the sidewalk with my little nephew, Per, and yes, I should like very much to walk over to the Emerson with you two to see your friend Jen’s new shop. Hiking the “M” with Hope, watching the pink swath of morning light overtake shadow of mountain and consume the valley with brilliance. Looking into Jo’s eyes swimming with tears, heaving sorrow for one entire year gone without her beloved, Jens fallen on Beehive Basin a day shy of a year ago. Hugging Solveig’s glossy brown hair to my chest, joyful for days at home with her, mourning that I must leave her once again.
Twenty-five of thirty-six months spent away from home. Not only must I leave yet again, but what I’m returning to looms up like oppressive shadows, a chill rushing in, clouds blocking sunlight. On Tuesday, April 12th, Allistaire will once again go through numerous tests looking for her cancer. On Day+91 Post Transplant Allistaire will have a PET/CT, Brain MRI, high-resolution chest CT, bone marrow biopsy, lumbar puncture and skin biopsy (to check for GVHD). The bone marrow will be tested by Flow Cytometry, Cytogenetics, Pathology and for Chimerisms (percentage of donor vs. patient/Allistaire’s old diseased marrow). In her last round of testing, I was originally told all nine of nine tests detected NO cancer. A week later, a second review of the PET/CT and Brain MRI concluded that there appeared to be some tissue changes in the area of her right sinus maxillary exactly where there had been disease before. The changes were not significant enough to allow the area to be biopsied, but could either represent leukemia or her cold/possible sinus infection. On the 12th, the images will reveal the path ahead, toward health, or ongoing battle with sickness.
There have always only ever been two outcomes. Either she lives or she dies. Nothing has really changed and yet, I keep smacking up against the brutality of her possible death. There seems to be no let up, no lull that does not last but a moment. When Dr. Burrows called to relay that the radiologists did not think it was feasible to biopsy the spot in her sinuses, I tentatively ventured to ask the looming question, what, what do we do if it’s disease? That very day I had gone to our Financial Counselor at the hospital to get some updated stats. To date Allistaire has lived 515 inpatient days in the hospital, almost 25% of her life cooped up within those walls fighting for her life. Sixty percent of her life fighting her nemesis. This battle has thus far cost $9,625,000. Nearly 10 million dollars have been expended to destroy a cell, one rogue screwed up cell that threatens to mindlessly swallow her alive. The very best of all that humanity has to offer has been brought to bear against this disease. No expense spared, to weapon denied. And yet…it still may not be enough.
With hesitation I asked about more treatment, pulling that massive number out into the light for Dr. Burrows to face. She tells me their focus is not on cost but on quality of life, they consider Allistaire’s quality of life and what may be able to extend that life. She went onto tell me how the world of oncology has changed in the time since she was a fellow, how in those days no one was ever offered a second bone marrow transplant. If you relapsed after transplant, there was nothing left, you died. Then in time they began second transplants, but then never if there were circulating peripheral blasts. But as research allowed for less toxic transplants and greater advances in supportive care, more and more treatment options became possible because patients could endure what was being thrown at them. She told me that even as short as a year ago a patient like Allistaire with extra-medulllary disease (chloromas), would most likely not have been offered a transplant. She told me that in all honesty, to be completely blunt, she did not think that Allistaire would survive her transplant. She thought surely she would die. As she sat after dictating Allistaire’s Arrival Conference for transplant, she wondered if they were crazy to offer this transplant to Allistaire, what were they doing to her?
“Jai, she’s defied the odds over and over again.” Yes she has. She had no complications in transplant with the exception of a small amount of mucositus in her bottom. She continued to eat, drink and take her meds throughout. Her heart held, her lungs did not bleed, her liver remained healthy with no VOD, she had no brain hemorrhage, she did not even ever need TPN. She discharged in record time, in only 22 days, the shortest escape being about 19 days. So, what will we do if it’s disease? The answer is unclear, the way forward a fog. I requested we sequence the genome of her cancer to get some more possible ideas of how we might target her disease. The answer arrived a week later, that yes, Soheil had approved deep sequencing to be conducted by Foundation One, and specifically their assay, Foundation One Heme. Here is a bit of explanation from their website:
“FoundationOne Heme is a fully informative genomic profile for hematologic cancers (leukemia, lymphoma and myeloma) and sarcomas, designed to provide physicians with clinically actionable information to guide treatment options for patients based on the genomic profile of their cancer. It is Foundation Medicine’s second commercially available targeted sequencing assay.
FoundationOne Heme uses comprehensive, clinical grade next-generation sequencing (NGS) to assess routine cancer specimens for all genes that are currently known to be somatically altered and unambiguous drivers of oncogenesis in hematologic malignancies and sarcomas. FoundationOne Heme simultaneously detects all classes of genomic alterations, including base pair substitutions, insertions and deletions, copy number alterations and select gene rearrangements in 405 cancer-related genes. In addition to DNA sequencing, FoundationOne Heme employs RNA sequencing across 265 genes to capture a broad range of gene fusions, a type of alteration that is a common driver of hematologic cancers and sarcomas.”
This genomic information on Allistaire’s cancer cells are then cross-matched with clinical trials and possible targeting drugs; all in an attempt to expand her options for treatment.
The sun is lowering in the sky, rays of light skimming horizontal across rock, illuminating the craggy face of Ross Peak. As my eyes rest on the timeless grandeur and power of rock and light, my mind hones in on these words, “The Lord commanded and it stood fast.” Psalm 33:9 “This far you may come and no farther, here is where your proud waves halt.” Job 38:11 My life has felt unfathomably tenuous, the thread frayed about to split and everything scattering. But this is illusion, this is sensation, this is seeming not actuality, this is seeing through eyes of flesh. And while this fight dwells largely in truest flesh, it is bound to and enveloped in the voice of God, the voice that calls out all the starry host one by one, each by name. Because of his great power and mighty strength, not one of them is missing. God my God is God over all, over every star and wave and cell and molecule and whirring atom. My life is anything but tenuous, it is secure in the Lord, and it is He who determines its boundaries, its dimensions, its qualities of light and color, of texture and fragrance. He commanded and IT STOOD FAST! Yes, yes I am absolutely terrified that Allistaire might still have cancer and I know of nothing left to rescue my girl and it makes me feel like my flesh will explode into a million ragged bloody pieces if this beast takes her down. Being home in the wonder of this beauty and ordinary makes me long to finish this fight all the more, makes me yearn for wholeness of family and relationships, of rhythms of days and seasons. The changing light on the Bridgers , shadows lengthening, colors of light intensifying – it all taunts and calls to me, the freshness of cool morning air, grasses waving in wind. But I gather it all up, a heap of longing and I fall down before my Father, handing it over, entrusting, resting. You are God. That is what it comes down. He is God and I will choose over and over and over to take His hand, knowing He holds all the world and its goings ons there.
What results come from Tuesday’s scans…they come from the hand of God, and by the power of His Spirit at work in me, that same power that raised Christ from the dead, I know, come what may He will hold me up. He will make my heart sing.
Thank you so much to those who have already tangibly supported our fight for Allistaire’s life in giving to support me in Obliteride. If your heart aches with desire for there to be another open door for Allistaire, for your own battle against cancer, for the beloved flesh of your mom, your brother, your dear friend, please consider supporting cancer research at Fred Hutchinson Cancer Research Center. One-hundred percent of funds donated to Obliteride go directly to accelerate cancer research.
Click HERE to donate to OBLITERIDE and save more lives FASTER!!!
Jai, I am praying for God’s grace today, as you find out test results. Also praising God for sustaining Allistaire’s precious life in light of all that she has undertaken. What a testimony to all of the people who have seen her “beat the odds.”
Jai & Sten, Solveig & ALISTAIRE – Tuesday, April 12, You are all in this together. You have fought the good fight. You continue to press forward taking the hand of God with you. And He WILL hold you up…we just don’t know in which particular way that will happen. It’s so hard and truly we see and feel your struggle and our humble inability to help very much. — Please know you have SO many who care, who pray behind you, who lift you all up this day. May answers come and may you be keenly aware of the love that surrounds you all.
Prayer and praise, grateful for you and your family, grateful for Jo and Jens and their testimony, asking for God’s will in your lives, and that Allistaire’s odds-defying life would offer hope and help to others who are on the same ragged, desperate path. I love you.
I love the pictures of the mountains that you posted, makes me want to cry! My home, Montana. I can see why you want to be there too. I have not been back for six years. I know you long for normalcy in your life, for a deep sigh of relief. Our God is so mysterious in His ways. It would be nice to know what He is up to sometimes. But, I guess we have to bow to the fact that He DOES know what He is doing, He sees the bigger picture, the finished canvas, and you, Allistaire and all of your family are beautiful brush strokes being applied. Don’t you wish sometimes that we could always be in that place of blind trust? Where we are continually resting in His arms like a small child trusting completely in daddy, even when we cannot see the road ahead? Wow, that is exactly what He wants us to do. Praying for your complete rest in the Savior’s arms.
Wow, your words are beautiful and your faith, it’s inspiring. I will continue to pray for your sweet girl and your family. We have met you at children’s, our son also has leukemia. He was diagnosed a week after his second birthday on April 6th 2015. Your little girl was the only person that could make him smile during our first stay, we would so look forward to her dancing and singing in the hallway every night. She brought so much JOY to our family in a very hard and scary time. I will continue to lift you all up to our Heavenly Father. Thank you for sharing your story.
Jai, so happy you are able to be home… We continue to pray for the day you and sweet Allistaire are able to walk those dirt roads and stare at the Bridger’s together though! Lord God please I ask you hold Allistaire in your healing arms and yield beautifully clean test results!