I am exhausted.
“You can choose to be done with chemo…you can choose to take her home…quality of life…hospice in Montana.”
These are bits of what words I had to try to soak in this morning. Sunday Allistaire’s blasts were 5-6% and could be potentially explained by a recovering marrow. Monday they were 16% and it was obvious she was not in remission. I felt overwhelmed at the idea of another round of chemo before transplant and the fear of it not working either. This morning her blasts in her blood were 24%. I suddenly thought maybe we needed to bring Solveig out here to Seattle to see Allistaire because it has already been a month and a half since they’ve been together and if all went ideally from this point forward, it would be at least 2 more months. I thought Solveig should come right away before we started more chemo. I wanted to ask Dr. Pollard.
Dr. Pollard called and agreed it would be good to bring Solveig out, “unless [we] didn’t want to do any more chemo.” It was at this point the conversation turned to a place I had not expected. I will write more later but basically, the next step is the last option and the truth is – it’s a clinical study, it’s a long shot. We have no way to know if it will work. Each time you go through chemo and it doesn’t work, it lessens the likelihood that the next step will work. Eventually, you come to the end.
Sten and I decided that he and Solveig would fly to Seattle tomorrow morning so we can spend some, “quality time,” as a family together. It may be the last time we spend together doing some fairly normal things. We don’t know what’s ahead for Allistaire. I want to throw up. I wail silent, dry heaving wails. My face hurts and my brain can’t stop thinking of how I don’t know how to live without her. i don’t know how to do this. How do I spend, “quality time,” without sorrow that strangles my breath? Sten asked Solveig if she knew why they were flying to Seattle and she responded, “yes, to see Mommy and Sissy.” Then Sten told her that this was true and they were going now because “Sissy’s medicine isn’t working and we don’t know how long we will have with her.” How can I tell you what it feels like to have your 6-year-old crying and telling you on the phone that she, “hopes Sissy doesn’t die,”?
I am one of “those people.” The people “out there,” that this happens to. Bewildered. You look around you and you realize, no, this is real and it is your life and your child and you simply cannot fathom it. I lay with Allistaire at the beginning of her nap and rub her back and I absolutely can not imagine her flesh cold and dead. I can not imagine looking out my kitchen window and seeing only one little girl playing, alone. I fear I do not know how to be the mom Solveig will so desperately need me to be. I don’t know how to go out into the world and live with part of my core amputated.
Sten and I do not feel done. I look at Allistaire and I think, she is too alive, we cannot yet be done. Her preliminary bone marrow test results today showed 50% blasts in her marrow. We started with 1.1% and went up to 25 and here we are at 50%. Tomorrow she will likely get and EKG and an Echocardiogram. Results from her spinal fluid and the flow cytometry should be back. We have a meeting at 3pm tomorrow with Dr. Pollard and Michelle, from the Pediatric Advanced Care Team to discuss our plan. We hope to have several days of taking passes out of the hospital and enjoying one another before we start this next round of chemo. This last round of chemo. Allistaire’ s ANC was actually zero today so we still have to be very, very careful. As Sten noted, we have worked so hard to keep her safe, we cannot abandon those efforts now, despite being given the option to leave the hospital all together.
I call out to the Lord over and over, but ultimately He has not promised me her life here, nor has He promised to take away the pain of her loss, though these are the things I ask for. This is not an “either/or” situation. This is an “and” situation. I know pain and I know comfort. The comfort has not taken away the pain but it surrounds and holds the pain. The pain is acute and slicing and ripping and stinging and the comfort does not come at the same pace because at its very nature it is eternal, it is beyond this time and the finiteness of this reality. But I look with hope for comfort whose dimensions far surpass this thing that threatens to suffocate the life out of me. I hold to the comfort that Allistaire will not be an angel, but a child of God fully dwelling in His presence with fullness of joy and life. I hold to the comfort that I will see my beloved again and that this is not truly the end. I hold to the comfort that God will redeem this and the beauty will one day outweigh the dark agony. I hold to the comfort that though I cannot see how, God will carry me, day by day, by day. I hold to the comfort that He stands with me now. He stands in the circle of doctors doing rounds. He has not forsaken me. I pray that this ragged, gaping hole in my heart and gut will be filled with His grace and that somehow, in the very midst of what feels like my own death, God would overflow and streams of living water would meet the mouths of the parched. That out of this death, in it’s myriad of forms, life, life abundant would take root. Lord hear my prayer.