We are those people. We have become strangers from even those who have known this road with us most intimately. She is not yet gone but the memories, they flash in and burn. Every step igniting shards of pain. Beauty and joy, that with the awareness of their loss, pierces rather than delights. Thoughts, uninvited barrage, come sailing past, slicing, blunt force. I was teaching her the names of plants and she would yell out their names as we drove about – forsythia, I see forsythia, she exclaims. Red-tip Photinia gets blurted out over and over. And there it is, a brutal mingling of what once brought joy and proclaimed life and growth is transferred into the category of no more and then the gaping expanse of emptiness where more names of plants were supposed to dwell. But I wanted to teach her to crouch low and delight in the delicacies of moss, of tender fern, of trickling stream, to watch the light stream through trees, to stop and listen, to soak in life, to learn the secret of the bounty observation brings…
We have had rough times before, really really rough times. There have distinct situations in which her life could have easily veered toward death, it was right there, standing at the threshold but never had it entered in. To look at her is disorienting, to consider the severity of the situation keeps getting rejected and spit out over and over. Dr. Cooper called in early evening. I told him of the second guessing our decision that had already come, of the disbelief that she really is being over taken by her cancer, that there really is nothing to stop it this time. I ask him again, are you sure, totally sure there is nothing for her, nothing? Nothing. There is nothing left.
This morning I thought, maybe there is something out there in the world, some new and wild way to tackle her beast, some new angle that can catch it unawares and strangle it at long last, extinguishing its mindless assault. But no. There are only the same grooved paths. Therapy, primarily chemo, all to get to a transplant and she just had a transplant. She just had THE transplant, the no holds-bar transplant, a full-conditioning volley of weaponry – if that didn’t work, there is at present nothing more under the sun that can cure. And so the question rises, can we give her something to hold her, to simply keep her going? But to what end? And it’s not like this doesn’t come at its own cost. The one possible goal was a CD123 CAR T-cell trial that is still in the works at CHOP (Children’s Hospital of Philadelphia), but it is months and months out. And with Allistaire’s current heart function she wouldn’t qualify anyway. And perhaps more than anything, the startling speed of this cancer’s progression makes nearly any novel therapy too late. Her kidneys are suffering with a steadily rising creatinine level. Her potassium and uric acid or rising due to tumor lysis. And this rise in potassium, the unbalancing of electrolytes, could at any moment cause cardiac arrest.
Before we knew it, without intending to and without being able to yet utter the words out loud, we began to discuss what it will look like for her to die. Does kidney failure hurt? No, it would be peaceful. As would her heart simply stopping, peaceful. What a strange thing to hope for your child. I do not want chloromas to overtake her body – they cause incredible pain and deformity. No, it seems most compassionate to make way for some other finality. I do not want her to bleed out. We must keep giving her platelets. But red blood? It may come to the point that we simply don’t give her any more red blood and she will grow more and more tired and sleep and never wake up.
I cannot believe I am having to have this discussion. I cannot believe the words entering my ears or coming from my tongue. It sounds like logistics, some planning committee. Hospice will meet you on Monday at noon. PAC Team (Pediatric Advanced Care Team) will do this, Dr. Cooper will check on this…but there is this little girl, the nucleus of all these efforts, these considerations. And while it all might sound callous and aloof, distant, I am confident of the sincere care for Allistaire in that room, especially that of Dr. Cooper and Dr. Bleakley, two doctors who have intimately walked this road with us, who have thought long and hard over Allistaire. They are dear to me and I trust them. I trust them because the are incredible brilliant people who have walked this road with families for many years, who understand the disease far, far more than most and who have known Allistaire as a real girl, not a med rec number, not a PET scan result or Flow Cytometry percentage. And so with what very little time we have left with our girl, I will not go running after obscure options. We have chosen to rest in the expertise of our doctors who are connected nationally and internationally with fellow physicians also working on AML. They are a gift of great worth to us. They honor us and honor Allistaire in their enduring work to care for children with cancer.
I am already incredibly tired. I don’t want to leave her side. I feel the tiny bones in her hands and the light passing across the tiny little peach-fuzz hairs on her cheeks, the long dark lashes and puffy eyelids. I listen to her breathing and rub the warmth of her back, the delicate blades of bone. And it all just hurts so bad. Tonight is Friday night. It’s always been Friday night pizza night and a movie. Sten and Solveig honor that tradition in Montana and we here in Seattle. But tonight? What is tonight? Is it my last Friday night with Allistaire? I gag at the thought. I long to throw up, to some how clamp my hands over my ears, to press my eyes closed tight and somehow make it all go away. Can I just go back to a week ago? Can I just undo this awful week? Can we please not take this path? I want to scream and scream and scream until my voice is gone.
When we sat with Allistaire on her bed and told her that we had met with the doctors and there was no medicine left, that she would die, we asked if there was anything she wanted to do. “I want to go home,” she said. And while we feel our resources for this situation are best here, we are taking her home for two days. Two last days at home in Montana. Time for the four of us to dwell in that home one last time altogether. Time for our family to gather. I don’t know how our hearts will bear up under it. But we must live out each moment, each minute that amasses to become an hour, and hours days. Yet we may really be down to days and I can’t stand the thought of it. My body just shakes, rejecting that the child I gave life to I have to at last lay down and walk away from.
I must go to sleep. In the morning I will pack for this brief visit home and she will get a transfusion of platelets and red blood to tide her over.
Thank you for your many messages of sorrow and love. Thank you for your prayers. Many of you have expressed a desire to help. First please understand that our time with Allistaire is so short, we will really be keeping to ourselves and our immediate family, a few close friends. At this point in time we ask that you don’t ask to come visit unless we have already communicated with you. Please know this is no reflection on you, rather a need to be realistic with our finite time and emotional resource.
Another way to demonstrate your angst toward cancer, your sorrow over the loss of Allistaire’s fiesty bright sweet spirit in this world, your support of our family, is to give to OBLITERIDE. I cannot tell you how brutal it was this morning to hear of amazing research underway in the lab that is no where near being ready for Allistaire. While I rejoice at the advance of cancer research, it is too wickedly slow! What heartbreak to know that while cures are underway, Allistaire’s body will have already ceased. Please consider honoring Allistaire’s life by supporting me in funding cancer research at Fred Hutchinson Cancer Research Center through Obliteride.
Click HERE to donate.
“Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.
Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.
And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen.” (1 Peter 5:8-11)