Last Tuesday, May 1st, I spoke with Kira, our SCCA Insurance Coordinator, who told me the good news that she had been able to give Laurie, the Unrelated Matched Bone Marrow Donor Search Coordinator, the official go-ahead to pursue any and all testing she would need to find a match for Allistaire – the hospital’s Compensated Care program would cover the costs. Wow did that turn out to be a whole lot easier than trying to get an appeal through with our insurance company in a timely manner or having to raise huge amounts of funds. It seemed like a click of a button. There is a way in which it was really, really easy to have this provision and yet that is an illusion. What it actually took to make a way for the funds to complete donor testing is a whole lot of people who have given to Seattle Children’s Hospital. There would be no Compensated Care program if folks had not felt moved and chose to act by giving away their money to the hospital. And what does it take to move a heart to move past greed and have compassion and to courageously give away what they could keep for themselves? And what did it take to provide the resources they were able to give away in the first place? And what about all the staff and their salaries that exist to coordinate this giving and receiving and distribution? What seems like a minor exchange of paper and/or emails is actually the last simple step of an amazing reality that took an incredible number of amazing acts to accomplish.
Kira also detailed to me how she and the SCCA lawyers would be working to appeal our insurance company’s denial/exclusion of payment for clinical studies. Remember that, should Allistaire not be in remission, she has one option – a clinical study – which our insurance company does not pay for. She told me that it has been a very difficult fight in the past with our insurance company and that ultimately, if we had to, the hospital would again pay for the transplant. “Oh,” I said, “I think Montana just passed a law that prohibits insurance companies from denying coverage for cancer patients for clinical trials.” Kira was beyond excited and I told her I would pass on this link to her with more details. The very next day she called to say that indeed such a law had passed and that she had in writing that both the clinical study trial and the original standard care transplant had been fully approved by our insurance. You see, 2 days before our phone call, Governor Steve Bullock of Montana signed into law Senate Bill 55. Wow – what amazing timing – how handy! But check this out – “Senator Kauffman and a coalition led by the American Cancer Society Action Network started working to remedy this problem facing cancer patients nearly eight years ago.” This was years and years of effort. I called Senator Kauffman that very hour to thank her for her work on this bill and to let her know that only days after being signed into law, my three-year old daughter was going to be one who directly benefited from it. She thanked me for relaying our story and that many had provided testimony akin to ours as to how great a need this is. I stand in awe and giddy, make-my face-hurt-smiling joy – check it out – look how God provided! Did I have any clue or care in the world about such a law eight years ago? Did I know that Senator Kauffman existed? N0, all of this groundwork and provision has been being crafted all out of my sight and knowledge – but it was there – it was real and it is powerful and significant and it blesses me in my very hour of need.
Yesterday I got a call from Laurie, the Search Coordinator. Three of the six originally requested donor tests had come back. Two of these three are perfect 10 out of 10 matches. Now who are these people – these two people who through some circumstances of life were moved to join a registry they have to pay to be on and annually renew their commitment? What has transpired to bring their life blood to be available to enter my child’s body across this globe? Think about it? Is that not actually crazy? Is that not wonderful and beautiful? These are two people, like you and me with names and stories and lives, they took steps to give – to make their very flesh available to bring life to another human – someone they have never met and can probably not even imagine.
I look around and I see walls toppling – formidable obstacles seemingly easily and gently swept to the side – the way ahead made clear and open. I force myself to consider and look behind the simple facts and ask how? How did this come to be? What innumerable steps and actions must have taken place to bring about this reality? How inscrutable the path of chain reaction that produced these blessings. We choose blindness and in turn, despair, when we do not look beyond the surface, when we simply take things as they are. NO! NO! There is more, so much more that is the backdrop to each reality we experience. You know what movies I love? I love the movie, “Crash,” and “Babel.” They are tremendous and beautiful because in a visual way they give us glimpses of how intertwined are our lives. Perhaps now may not see the time to bring up Chaos Theory – but it is one of my dearest loves and so…in 10th grade I read this spectacular book, “The Turbulent Mirror.” I am no mathematician, though I know I would simply swoon over and over at the beauty and elegance and intricacy of mathematics. There are two specific ideas that have stayed with me. First of all, the tiniest change in a “system,” can have extraordinary, radical, monumental changes. One tiny, seemingly insignificant act can produce a ripple of change that utterly changes the outcome. Secondly, out of seeming chaos, come patterns or “strange attractors,” as they are called. Within the chaos, if you iterate the system enough, the further and further you get to infinite iterations, you see shocking, beautiful patterns emerge. The most famous of these is called the Mandelbrot Set. What seems like chaos only “seems” so. If we could look further and further and further out into and across time, we would see beautiful patterns emerging. God, Ancient of Days, is at work intricately bringing about all things to accomplish His glorious plan. Rarely do I get to see what makes sense. So much of the time, at my tiny finite level all seems chaos and chance and random. But I push myself to ask, to ask, how? How can this be true? I do not actually expect to discover the answer to my questions, but it is the pushing to ask how that illuminates the magnitude of how great is the provision.
Faith requires that I look backwards to have courage and hope in my future. I must take stock of what has happened in the past, in order to mount the enormity of evidence necessary to believe in God’s goodness and faithfulness in the future. I do not face weighty challenges to my faith with no backdrop. Belief in God and evidence of His faithfulness did not begin in December 2011 when Allistaire was diagnosed. No, in my own life and all around me there has been overwhelming opportunities to see God. It is all these God-sightings over the years that enable me now to see God more and more. It is the innumerable times that I have seen God in the past that give me eyes to see Him now in darkness. Two previous posts come to mind, one written almost exactly one year ago which you can read here and the other from last fall that you can read here. They are both about witnessing God’s provision which is ultimately about experiencing His goodness which in turn gives me courage to walk forward when I do not see the way. I consider the days ahead and realize that I am both unable to know what lies ahead and what I imagine as the possibilities leaves me wondering how, how will I live – how can you possibly meet me God the way I will need you to? So. I choose to look back. I force myself to consider and wonder about all the bounty of past days and it leads me – it guides my eyes to see that I abide In Christ and He is the way forward and in His perfect God-ness, He has already gone before me, just as He has done countless times.
I’ve had hours of conversations with doctors in the last few weeks. Slowly questions are being answered and other questions are let go of. Sten and I have wondered how much do we research and pursue different options for Allistaire. What do we set aside and what do we pursue? One thing that has brought greater peace about the possibility of this clinical study transplant is that it is not a new course of treatment – it has been studied at the University of Michigan, the University of Indiana and at M.D. Anderson and because it has had promising results, it is being now offered as a clinical trial here by Fred Hutchinson. In addition, I was able to talk to a doctor that was recommended to me as one who might be especially knowledgable about transplant without remission. He is the bone marrow transplant department head at his institution and while he gave me a few things to consider that might help Allistaire (both actually after the transplant itself), what he spent most of his time talking about is how we should feel very confident in where we are at. He reiterated over and over that we had the best of what is offered and that anything that might be available in the country, is available in Seattle. He said that as a parent, he would take great confidence in his own children being treated here. This was unsolicited encouragement and came a few hours after me venting to God that I did not know what to do about pursuing lots of leads outside of the Seattle Cancer Care Alliance. I am also told that Fred Hutchinson has some of the highest long-term survival rates. Tomorrow at 12:30pm a number of bone marrow doctors and the Hem/Onc doctors will meet to discuss the most complicated patients, Allistaire included. Please pray for that time that God would direct their thoughts and words and guide their decision-making. Incrementally, we are feeling more and more at rest entrusting ourselves and Allistaire, after many, many questions, to the skill and experience of these doctors we’ve been given.
In the midst of all these meetings and phone calls, Allistaire has been doing quite well. Over the past several days her joyousness and sweetness to staff seems to have markedly increased, as evidenced by numerous remarks. She has started engaging much more with the nurses and CNAs. She has silly antics and voices and faces and tries (and succeeds) in escaping the room through the laundry pass through cabinet. She has figured out how to call the Unit Coordinator at the front desk and holds conversations with them. We have gone out on pass at least one, and often twice, every day. A new friend from Bozeman brought out her tricycle so she has had a great time riding the Burke Gilman trail and continues to play at the Magnuson Park play ground at twilight and into the dark – after the other kids leave. So much free physical therapy and opportunities for joy. Today we saw a whole group of adorable fuzzy yellow-headed goslings on the lake. She also continues to eat relatively well and gained .4 kilograms since her last weigh in. Her blasts hit zero on her last blood draw before receiving the second dose of her chemo. They have remained at zero since then. She even has an ANC of 100 that several days ago was as high as 216.
Doctor Pollard wants to give Allistaire three doses of this chemo (which are 10 days, not 7, apart). Sometime between day 5 and 8 after that third dose, she wants to test her marrow. So by my calculations, she will get her third dose of chemo on May 14th which would then put the bone marrow test sometime between May 18-21. Since the 18th and 19th are on the weekend, I wouldn’t be surprised if she plans for it on the 20th, or maybe even as early as the 17th. She also wants to test Allistaire again for RSV two weeks before she anticipates she would be transferred to the bone marrow team. Once transferred to the bone marrow team, it would be approximately 2 weeks until the actual day of transplant. I think her plan is to test for RSV in time to treat it prior to transplant if necessary. Timing is ever-changing but it looks like we are likely a little more than a month out from our much hoped for transplant day. Please be praying for two other little boys who also have AML who are having similar struggles getting into remission. I have not heard much about transplant for them but this is in part due to the limitations of languages as none of us speak one another’s native language. Nevertheless, it is clear that they both are also struggling and no matter the barrier of language and culture, we speak the same language of caring immeasurable for our children and wanting to see them live.
You have an amazing gift of sharing the sweetness of Our Lord! What a joy in hearing the news of the available coverage of medical outreach for precious Allistaire. Praise Sweet Jesus. I’ve shared the needs in prayer for Allistaire with my small group and will look forward to updating them with this praise. God bless you sweet sister and May the Lord continue to bring you strength and healing in all ways as you travel on this journey. love, Terry
Amazing and glorious. I can’t tell you the joy this good news brings us. I will be asking for more revealing of beautiful patterns triggered long ago (I also love chaos and systems theory!). Jai, since they have two 10 and 10 potential matches, if she stays in remission, would they do a bone marrow transplant instead of the stem cell transplant? I am reveling in the very real options that are unfolding. Sending lots of love.
I stand amazed at how awesomely faithful our Jesus is. Dang. We worship a gracious King!!!! Praying for y’all. Much love!!!!!
I love the focus on remembering. I build ebenezers as testimonies to what God has done in the past so that I can look to the future in hope. Reese’s wedding theme was “remember” for the same reason. When we see what God has done, it is easier to trust what He WILL do. I love you, Jai! Praying ardently for you all, and will lift up the two boys you mention.
Thank you for continuing to share your story with us. It is an amazing testament to God’s goodness through all parts of life – the good and the not as easy. Thank you sharing how we can pray for you, Allistaire, the doctors, and the donors. You are a beautiful woman – inside and out! – and it has been an honor getting to know you in person and through this blog the past few months.
Rejoicing at this news & continuing to pray, to cry & to cry out! Thank you for sharing your walk, Jai.. Amazing & beautiful!
This whole posts resonates with me on every level. I’ve been down in the pits of despair, for sure and unfortunately it wasn’t until bad things started to break down my heart, that I really sought the Lord. I’m not proud of that. I wish I could sit down and have a cup of coffee with you and talk about all of it. How in hind sight, at the times I felt the most alone, God’s presence was so obvious. I do not believe in coincidence.
I wanted to mention too, that 17 months ago, the importance and the power of the new immune system itself was even less understood than it is right now. There is so much progress being made in this area. What a relief to see that the biological power of the graft is being considered more and more and that the key to a cure lies there for so many. This new avenue of hope that has opened up in there place of no more options. There is so much hope. Thank you God.
I am thankful and happy to see these walls crumbling down around you. I am thankful for Allistaire’s high spirits and sweet charm. I am thankful for the light that you shine into my life. I pray the blessings continue to rain down on you.
What an amazing God! Only He could have possibly orchestrated all of these events! All I can say over and over and over is thank you, Jesus, thank you Lord Jesus! More than we could think or imagine, He has done! “Giddy,” one of your favorite words, isn’t a term I would usually describe myself as being, but after reading this post, I am doing the happy dance, giddy with joy and delight over what God has done! “Did” and I rejoice in God’s goodness and your recognition of these blessings that obviously flow from His gracious character! May He be praised!
Have been praying for your Family so excited to see God at work for you.I heard the words to this song and they have stuck with me.What is a Mystery to me is a Memory to Him he is the Light at the end of our road.Praising God with you.In His Love and Service Bobbie
Praise the Lord – two donors that are matches!! I’ll be praying that Allistaire does well in the next month and that the transplant day can come as hoped and planned. Thank you so much for your wonderful posts, Jai. Sure miss seeing you and Allistaire. Love you.
God is amazing! Yay for good news on the donor front! We are standing with you in prayer. Love seeing Allistaire’s smiling face. She’s beautiful.
We are so happy for “the walls crumbling down” and things working out…God is amazing and knows every little detail that needs to happen. It was so nice to visit with you Saturday, although wish it was under different circumstances, but nonetheless, I’m glad we could reconnect. After reading all the mom’s blogs while their child is going through cancer, I sure wish I would’ve done one while Nicole was inpatient. It’s such a good outlet of our emotions and just getting it out there so others know what to pray for. I hope you enjoyed your Sunday alone “antiquing”.
My very best to Allistaire and you, Jai. I’m very much looking forward to the next update.