I started this blog the night after our younger daughter, Allistaire (21 months at the time), was diagnosed with AML (Acute Myeloid Leukemia) on December 10th, 2011. She is little sister to our only other child, Solveig (pronounced Sole-vay) who turned 6 years old in August. At the time we were living in Kent, Washington – a suburb of Seattle. The night before I took Allistaire to the doctor and first heard the word, “Leukemia,” in connection to my wee beloved child, my husband had a long sought after job offer with a great company in Bozeman, Montana, his home town. He had to turn the job down but said that if they could hold the job for the next 6 months, he might be able to take it. On the night before getting results from Allistaire’s first bone marrow test since beginning her treatment, we received word that the company really wanted to find a way to make it work for us and they would hold the position for Sten assuming he could start by April 15, 2012. The next day we got the news that we had so hoped for – they found 0% cancer cells in Allistaire’s bone marrow using the awesome Flow Cytometry test. Allistaire was in full remission. Bone marrow test after bone marrow test concluded the same thing. On April 13th, Sten and Solveig moved to Bozeman, Montana while Allistaire and I stayed in Seattle for the remainder of her treatment. On May 15, 2012 Allistaire had her Hickman Catheter removed from her chest and she and I got in the car to head to Bozeman. On June 30th we officially moved our life and home from Washington to Montana – the answer to years and years of prayer.
How can I sum up here in this brief space what has transpired? And who really are we? This has been a path I never wanted to know anything about, but I have walked a road where God, creator of the universe, Savior of my soul, has met me over and over and over. I have known peace that utterly surpassed understanding.
Allistaire is sitting by my side this very moment – with her big blue eyes – her eye lashes, long and lush have returned and though her hair is no longer curly it seems, it is over two inches long at this point. The doctors told me that people find the transition out of the hospital at the end of treatment is always far harder than they could guess. This has been certainly true for me. I find that I now have details of sickness and death that were previously generic. I can now imagine in vivid detail what it could be like for Allistaire’s cancer to come back. The reality too is that every day with Allistaire has only resulted in me loving her more and more – the delight’s she brings to our family – they just continue to bind our hearts to her. When you are in the hospital day after day caring for the precious flesh and spirit of your child, you come to think that somehow someone so amazing and someone you love so deeply, cannot possibly die. It is not long before the names of those who passed away become so numerous that you have to try to remember their names. I am not saying all this to be depressing or morose – it is just the I have very recently come to realize that fear has had such a grip on me and I must daily fight the battle of submitting my heart and all the days of my life to God my Father.
These past four months since we have returned to “normal” life have been some of the hardest days ever. Everyone always says to me, “she’s okay, right?” And she seems like she’s doing well but every day could be the day that her cancer comes back. I have seen too much to think that we have any certainty that this is over. I pray that it is, but more than that, more than anything, I pray and my whole being swells with this prayer – that I would walk resting in Christ – the author and perfecter of my faith. Cancer is not just about flesh, it is even more so about spirit. I will fight to not allow my eyes to remain downcast on the gritty details of cancer cells and blood counts – there is ever so much more to this road that the Lord has us on. He is up to something. He has not taken away life – He has expanded and pushed out the limits of our life. I am expectant. I want to be more on the look out for what God is doing and where He is extending grace than for pink cheeks, and appetite and energy that give me comfort that Allistaire is well. God means this for our good and not just our’s but for so many more lives than just our own. He is able. He will accomplish it and I, I get to glimpse the edges, the faintest outlines of what He is creating through this. God is my light and my salvation – the stronghold of my life.
* I wrote the above sometime in the fall of 2012. I leave it there to give perspective. It is now June 2013. Allistaire’s cancer came back in February of this year, showing up in a small lump in her back. We returned immediately to Seattle Children’s Hospital where she first received treatment. On February 25th, Allistaire began treatment for relapsed Acute Myeloid Leukemia that was in her back, the lymph node in her left arm pit and 1.1% in her bone marrow. The first round of chemo failed only days after receiving chemotherapy and the blast count in her marrow had risen to over 25%. The next round of chemo failed as well and resulted in a blast count of 80-100% in her marrow. We were told we could choose to be done with chemo and bring our little love home to die. We chose to continue because, other than her cancer, she was in good shape. We attempted one more round of chemo only to have it fail as well. The blast count was 73% in her marrow and must be 5% or less to be considered in remission and to move forward with a bone marrow transplant that is the only real hope at a cure. Under normal circumstances, Allistaire’s chance at survival would be less than 10% with a bone marrow transplant and so they would not offer her one and we would be bringing her home to end her days. We are so unbelievably thankful that there is a clinical study for a bone marrow transplant that allows patients to not be in remission. So this is what we are working toward.
In the last two weeks, Allistaire went from running around and riding her bike to being bed-ridden. This sad transformation actually occurred in less than 7 hours. Cancer has shown up now in both of her femurs, both armpits, her chest wall and in the lymph nodes behind her knees. We are in a race to complete the testing necessary to determine if she qualifies for the clinical study. She is currently getting radiation to her back and to the lymph node in her left armpit. Her conditioning chemotherapy is scheduled to begin on June 12th and her transplant will be on June 18th with a 10 out of 10 matched donor.
Allistaire’s chances of surviving are quite low. Yet we walk forward, through each open door, hopeful and determined until the way is blocked and the door closes. Every single day I soak my little girl in and every single day I seek my God – fixing my eyes on Christ. I am constantly peering into the Garden where Christ submitted His will to the will of His Father, that I might do the same. “For the JOY set before Him, Christ ENDURED the cross!”
It’s now November 2014 and time for another update. Allistaire did indeed get that blessed transplant on June 18, 2013. It was a spectacular day of rejoicing and hope, hope, hope. We prayed that not only had the chemo killed the cancer but that the mysteries of GVL (Graft Versus Leukemia) would do the same. Her Day +28 marrow was clear of cancer, however, on Friday, August 9th 2013, a bone marrow test confirmed she still had disease – a mere .01%. It doesn’t matter how small the number – it was there and we were told that Allistaire had a 5%chance of survival and probably wouldn’t live more than 6 months. It was devastating. The next morning I got on my bike to ride in the very first Obliteride – a fundraiser to support cancer research at Fred Hutchinson Cancer Research Center. Allistaire began the chemo, Azacitadine, right away and went into remission with the very first round. After having lived in Seattle at the hospital and Ronald McDonald House for 8 months, we finally moved home in November 2013. For the following 5 months, we returned to Seattle monthly for a week of chemo. She remained in remission and had her lines pulled in March 2014, just days before her 4th birthday.
After a little over a month home, we again returned to Seattle because of a complication of transplant related to GVHD (Graft Versus Host Disease) that resulted in issues in her lungs. We were able to return home in time to go on her Make-A-Wish trip to Disney World in May. Back to Seatlle we went in June for her one-year post transplant follow-up. Her results were phenomenal – every last test result was good, even great. July labs were good, as were Augusts and another check-up in Seattle. We returned home to Montana after my second time riding in Obliteride and hoped to begin a normal life. Allistaire started pre-school, swimming lessons and dance classes. She was thriving and full of joy and life.
However, on her first day of preschool, on September 3, 2014, she was crying from pain in her arm. The pain only lasted half a day and was then gone for weeks. Occasionally it would reappear briefly. After a few more frequent and intense complaints of pain, I brought her into her local pediatrician’s office on October 24, 2014. A “very concerning” x-ray of her arm prompted another trip to Seattle with the real fear of relapse. A bone marrow test, biopsies of her bone and lymph node and a PET/CT scan all confirmed her relapse in the marrow at .6% and in 6 other places outside of her marrow. She began a chemo protocol called DMEC which begins with 7 days of out-patient Decitabine. On 11/19, we moved into the Cancer Unit at Seattle Children’s and for five days she gets Mitoxantrone, Etoposide and Cytarabine. We will remain in the hospital until her blood counts recover and she has a bone marrow test which should be around 12/17.
Once again, her only chance of survival is a second bone marrow transplant. The hope is to get her into remission and shrink the solid leukemia to get her eligible for the transplant which requires a 10 out of 10 bone marrow match.
On my first night back in the hospital, I cried out to the Lord, “Come back, Oh Father Come back, and put an end to all this sorrow and suffering.” Would we yearn for something beyond this life if it were devoid of pain and suffering? I can only say for myself, that the severe brokenness around me presses a sort of inertia inside of me toward the Lord. I yearn for Him. Yes, I am desperate for Him. For most of my life I despised weakness in myself and others; I despised my finiteness. I have come to see that my weakness and finiteness is the very way into relationship with the all-powerful, infinite God. The Lord uses death and brokenness to produce life and wholeness. Ooooo, mysteries. I love that the Lord is not like me. He is utterly other. He is ravishingly beautiful and exquisite. I long for a happy ending to this story. I long for it to come in the now and the here. And while that may not be in this life, I know it will be in the life to come, and I have seen The Lord. I will worship HIM!
It’s July 2017 and so much has transpired. In brief, Allistaire got into remission with the round of DMEC in the fall of 2014 and went on to repeat the same DMEC round a second time in order to “bridge” her to a second transplant which was tentatively scheduled for March 2015. However, in early January 2015, Allistaire got an extreme case of Typhus, an infection in her gut which put her into septic shock. She in turn suffered severe heart failure resulting in 80 days in the Pediatric ICU. It was a terrifying time in so many ways and the condition of her heart disqualified her from transplant. The cardiology team became as important as our oncology and under the guidance of the incredible, Dr. Law, Allistaire was put on over 5 cardiac medications and over the course of 12 months was able to regain enough cardiac function to once again qualify for transplant.
During these months it was difficult to keep her cancer at bay given that her heart could no longer endure intense chemo and because of the weakness of her heart, certain aspects of treatment which require large amounts of fluids to flush the kidneys were uniquely challenging. Allistaire continued to have low amounts of disease in her marrow and suffered from tumors in her sinus and behind her eyes that caused a great deal of pain and necessitated focal radiation. Allistaire had great success with the use of Mylotarg, a monoclonal anti-body drug conjugate drug created at Fred Hutch in the lab of Irv Bernstein. Also, she was the first pediatric AML patient to receive genetically modified T-cells, sadly however, they seemed to have no effect. At long last, she had a Cytoxin T-cell depleted Haplo transplant in January 2012 with her father, Sten, as the donor.
I was told that Allistaire would likely not survive the transplant due to her heart condition. I was later told by the same oncologist that in truth, she was virtually confident Allistaire would die. Never the less, Allistaire flew through her transplant with no complications and had a clear set of scans on her Day +28 bone marrow biopsy. She was thriving and full of life and joy and turned 6 on March 6, 2016. Only a month later it all came crashing down in a span of mere days. In 3 days time we learned that Allistaire had 6% disease in her marrow and cancer spread throughout her body and then at her request, we returned home to Bozeman for the final time, this time for her to die. It was a time that defies words. After one week at home, Allistaire had a stroke of some kind and could no longer talk. She died one week later on April 30th, 2016. Please see posts from that time as I cannot here begin to adequately convey the immensity of that time.