My friend and fellow cancer kicking mom, Pam, told me yesterday about a family who were told their five-year old daughter, Madeline, had an untreatable brain tumor. As they left the hospital with nothing but an unknown amount of time left, the doctor told them to remember that they had forever to mourn, but a limited time to fully enjoy their daughter. She died five days later. Everyone’s journey is and will be different, but something about this story pushed me just enough to the side of the rut of sorrow from the past few days that I was able to grasp onto some tangible goal to set my mind to. I still didn’t have any clue if or how I could spend, “quality time,” with us as a family knowing what’s before us. But today Sten and Solveig arrived. At first Allistaire was quite grumpy and still in a fair amount of pain from her bone marrow biopsy which has required a fair number of doses of pain meds. But it wasn’t so long before the two girlies were enjoying one another. As I stood back and watched them interact, I delighted to see a form of medicine not available anywhere in this hospital. I watched glee on Allistaire’s face as she and Solveig were just utterly silly together, silly in a way I have no capacity. I guess it takes a 3-year-old mind to think what the 6-year-old is doing is hilarious. We actually had a fairly lovely morning together and I didn’t think non-stop about cancer or fixate on these perhaps being the last times together laughing. I was somehow able to simply enjoy. I really hadn’t thought this was possible, but this morning gave me a glimpse that it is indeed possible.
When I awoke this morning I did not feel as deeply wounded by my swamping sadness. I have always known to put my mind and efforts toward something in hopes of producing something worthwhile. It came to my mind that this is what I have before me. Me, the task oriented person, was blessed this morning to realize that this is a work before me. No, I can do very little to impact whatever the outcome will be, but I do very much have choice and ability to impact what these days look like, no matter how short or long. I have forever to grieve if it comes to that. What I do have is right now. I have the opportunity to help my daughter fight this fight and win and to fight this fight to possibly die with as much beauty and dignity and joy and peace as possible. When I saw Solveig’s beautiful, cheery little face this morning, her eyes bright and hair swinging, I was reminded, this child is alive, this child needs me. I do not disregard the possibilities. For my sake, for Allistaire’s sake, for Solveig’s sake, I must face them. But, I cannot turn so far inward into my grief that I miss the very present lives right in front of me. Okay. Game on. Let’s do this. This is what is before us. I don’t know how to do this. I have no clue. And no, I am not strong. I am not wise. I am broken and weary and frail but that is not all that I am and there are lives – not only one life, but lives worth fighting for. I am their mom and I ask my Father in heaven to guide me to care for them through all the hours and days of this.
So here’s the plan. First we gather all the data to know exactly what state Allistaire’s body is in. Overall she is in good condition – her kidneys are working great, her liver is fine and exactly what they would expect. Her RSV is virtually non-existent and her rhino virus continues to go down. She has no symptoms. She had an EKG and echocardiogram today that in a quick pass looked alright despite some diminished function, but we will be getting a cardiology consult to see if there is anything we can do that can give her heart added protection for what is to come. A blood draw tomorrow will help take a look at her pancreatic function and a CT scan will look for fungus in the lungs, respiratory infection and the status of the two spots of bulk disease – her lymph node and back. There is no indication that there is an issue with any of these but we need to check to see where things stand.
The goal is to give Allistaire a round of chemo with no expectation that she will be in remission so that she can participate in a clinical study which is specifically for kids who are not in remission. If the chemo were to miraculously put her into remission, we could move forward with the original transplant plan which used cord blood. But because remission seems highly unlikely, we are setting our eyes on this clinical study which uses an old, old chemo in place of total body irradiation and a chemo that has been used a fair amount but not in kids who are not in remission. It has been used with some promising success in adults not in remission but I believe Allistaire will likely be the very first child. The clinical study requires there to be no active infections (just like the last one so we need to keep that RSV at bay), clean spinal fluid, over 5% blasts in the marrow and no more than 10,000 blasts in the peripheral blood. The first part of the spinal fluid test have come back clean and they are not anticipating the final portion of the test to show anything different. Today’s blasts amounted to 3,000 and most frighteningly, the flow cytometry test actually showed 80% blasts in her marrow. Now there really are very few cells in her marrow, but of those present, 80% are leukemic. Even though this does not effect her eligibility or presumably her prognosis in transplant, it is still a startling number. Ultimately the idea is that Allistaire’s leukemia will never be cured by chemo but we rely on the hope that GVL – Graft Versus Leukemia, where a new immune system will actually identify and destroy the cancer, will be her cure. Dr. Pollard noted that she believes immunology is what will eventually be the crack into curing cancer. So beautiful huh? An immune system, so beautifully designed to protect, will be able to be used to kill cancer! May it be!
So the really big change in the road ahead is that the transplant clinical study requires a 10 out of 10 matched bone marrow donor. Yep, here we are again, two months later. This is what we need – a perfectly matched donor. The chemo is really only taking place to give us enough time to identify potential donors, complete testing to identify the one best donor and make arrangements for the actual “procurement,” of the cells. The bone marrow search folks are not allowed to communicate the urgency to the possible donor because it could be viewed as coercion but we will really, really need this to happen fast and in the right time. We need good healthy marrow – which by the way comes from young adult males – so listen up boys – it’s too late for you to help Allistaire specifically, because the search has already begun, but there is someone else whose life depends on your sacrifice! So go to Be The Match.org and register today! And I don’t want to hear any of this nonsense of not liking needles. Get over it. Wouldn’t you want someone else to do the same for you, or for your sister?
Yes, we briefly talked about what it would look like if we did need to take Allistaire home and what our options would be. We skimmed this because we are not on that path at this point. It is still hard to imagine how death actually comes, but I am choosing to direct my eyes to the lives in front of me. If and when we get closer to that, we will have a lot more to discuss. For now we will continue all the ways that Allistaire’s life needs to be supported and protected to give her the best shot at what the steps before us.
Lastly, we are choosing to wait several days to begin chemo in order to prioritize time with our immediate family of four, Sten’s family who is all coming out from Bozeman this weekend, and hopefully my family as well, in the coming week. We are looking forward to making the most of the great weather that will enable us be outside and have fun without being around a lot of people. We are thinking about starting chemo Sunday evening.
I don’t think I’ve actually cried today which is truly remarkable now that I think about it. No parent wants to help their child die well. To even say such a thing seems like a mystery. As parents, Sten and I are entrusted with helping our children through whatever stage they must pass through. I hope of course that this is simply a very dark valley that we will look back on, thankful for how it has formed us, but with all four of us together. I don’t know what the future holds. You can say those simple words but then they come into clearer and clearer focus. You live the reality of insecurity, lack of control, finiteness, the illusions fade or are stripped away. But I suppose that is part of the good that is a by-product of all this, at last what is true is more defined and visible. Tonight I go to bed still very fatigued but a bit more light-hearted.
Thank you Father in heaven for hearing the overwhelming number of heart-felt prayers on our behalf! And thank you Ginni for the gorgeous bracelets/cuffs you made for Allistaire and I – I love them! You are too sweet! And a special thanks and joy for all the amazing women folk who have rallied around me and our family, near and far, you are a force to be reckoned with and it really does make me giddy when I think of the beauty of the body of Christ!