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!”