“To swim in the ocean, you dive through the waves as they come at you,” my friend Matt tells me as he points to the horizon and the relentless pounding of ancient force.
I do my best to dive through the first wave, but I don’t quite make it and the curling power forces me down. My body is tumbling in the cold water. I try to get my footing on the sand that gives way. Breath. Breath. I see the next one coming and before I can recover, it slams me down again. The waves kept coming, utterly oblivious to my plight. This must be what it feels like to be drowning, but that won’t happen. It can’t happen, right? After three or four waves I finally scrambled out of the pull of the waves, tired and shaken on the sand.
Matt is dead. The incomprehensible happened. And it’s happened so many times since.
My friend and her daughter are back on the Unit. She tells me how little there is left to try, how she must hang on for a clinical trial she hopes to get on, but it may not be until January. She walks slow in the hall, bearing up under the pain that seems to be everywhere. It has not mattered that her disease gave her an over 80% chance at survival. Her she is.
I saw a dad I know the other day. He and his daughter had driven hours to come visit one of her friends whose cancer keeps returning in the lungs, a bone cancer. This is how it goes and when it does, it almost always spells the end, eventually. He tells me of some of her other friends, this one at home on hospice to the north and the other to the south.
Hospice. “They went home on hospice.” Has a word ever cut so brutally. It is like a dirty, ragged knife, cutting slow but deep. It is tearing through your gut and it is so horridly slow but you can do nothing to stop its course.
I look at my friend and her daughter and think, here we are, we have at last become, “those people.” Those, that even within this small harsh world, have become “other.” We are the lepers. We are the stories to steer clear of. We are the living, breathing, shuffling statistics we have all sought to disregard.
I debated when my alarm went off this morning whether or not to give into the desire for sleep, but rather determined to get up and climb up and down the overly warm stairwell as some attempt at excercise. The nurse came in as expected for 6 am vitals and I asked her to see Allistaire’s labs.
“They’re all normal,” she said, “but the ANC isn’t back yet.”
The sickle came swift and sliced through my legs and left me collapsed.
“That means there are blasts,” I stammer and my eyes scan as she gets to the right page on her computer and there it is, everything is back now.
Absolute Blast Count: 10; Absolute Neutrophil Count: 0
Her ANC had been at zero for sixteen days and then on Friday it peeked up at 8. I was so relieved to see no blasts. Yesterday it was 20 with no blasts. Every day in rounds the resident repeats the same refrain, “awaiting count recovery.” That is what we’re here for. Get the chemo and then wait and wait and wait to see if it worked.
It hasn’t worked. The chemo has failed to control her disease, much less to suppress it to get into a position for transplant. It only takes the sighting of those few horrific blasts to know there will be no transplant next and what’s next requires a move to Denver. I imagine we will still have to wait until her ANC gets up to 200 to do the bone marrow test. You have to have enough recovery of the marrow to get a clearer idea of the amount of disease. What is clear is that her cancer is recovering along with some healthy cells.
I should also update the news that there is no match for a donor in the United States. Not one. She needed a U.S. donor to be able to get the Naive T-Cell depleted transplant that Dr. Bleakley is overseeing. It is just baffling and hard to imagine that in the whole of the United States there is not one person who can offer Allistaire the cells she would need for another chance at life. Please, if you are not on the registry, ask yourself why not? How often are you given a chance to save someone’s life? This is not abstract. This is as tangible as it gets! You haven’t had the time yet to go online to check it out? You’re afraid of the pain? Please, are these reasons to deprive someone the chance at life? So many have said they love Allistaire, they are praying for Allistaire. Is any child less worthy of life? I asked Dr. Bleakley if they could do another search for a U.S. donor if we ended up having more time before transplant and she said it was a matter of very diminishing returns. But you know what? It only takes one person to be a match, ONE. You could be that one person. Click HERE to sign up to be on the bone marrow registry. And please pass on this appeal to as many as you can.
The last two days have been pretty wonderful with Allistaire. I wish you could see her bright face and mischievous twinkle in her eyes. “You distract him,” she hoarsely whispers. “Connor, I think there may be dragons outside Allistaire’s room. Can you go keep a look out?” Connor, the CNA, joyfully plays along, and Allistaire speeds with IV pole in hand from bathroom to bed and throws the pale blue covers over her head. I cry out, “Oh Connor, where is Allistaire? I fear she has been eaten by the dragons.” The blankets wiggle and giggle with her uncontrolled delight. She wants to play this game over and over. Her appetite has been better and eating has become much less of a struggle. It still takes about two hours per meal but at least now she is getting in a reasonable amount at most meals. Her weight only dropped point two kilograms over the week that she didn’t eat much. She has loved having Betsy, the music therapist come by and sing songs together and play instruments. Two sweet young ladies from the ministry of University Presbyterian Church, Side-By-Side, came and played with her Friday afternoon. She absolutely loved having them and was desperate to have them stay longer. They promised to be back in seven days.
We’ve gotten into a little routine she loves. When I leave either in the morning or at her nap time, she whispers with glee, “you go over there by the curtain and I will tell you things.” So I obey and go stand at attention by the curtain. “I love you and I hope you have a good time exercising (insert whatever activity I’m off to do), and I’ll see you after my nap.” Then she blows me kisses and I respond in turn, “Allistaire, I love you, I hope you sleep well, and I’ll see you when you wake up.” I obnoxiously blow millions of kisses. Her eyes, so bright with happiness and her sweet, little voice tilting up and down with her words.
No matter how my times I have bent my knee before the Lord, submitting to whatever His will might be in her life, in my life, in our lives, I don’t know any better how to let her go. I have made no progress in my ability to know how to let her go. My whole being soars and stretches with love for her. This little girl becomes only more and more precious to me. And I just can’t comprehend someone so wondrously alive being dead. She is no different from millions of other children who have been lost. She is no more valuable than any other human, any other mom, sister, dad, grandparent that has died. But these millions upon millions of deaths do nothing to diminish the loss of her. If she dies, it will take all of her. She will be gone from this life. I see all that we’ve been given, these years with her, even these three whole years since she first became sick. I see how fortunate we’ve been to live in this time and in this place, we have been given so, so much. I see the overwhelming kindness of so many people, both that I know and those we’ve never met. I look at the Lord and I know I will see her again. I believe in the good that will come. But here and now, her loss would be loss. Her gone would leave a gaping hole. This life will no longer contain that voice, those bright eyes, that laugh.
I know I must go on, putting one foot in front of the other, going through each step that must be taken. I am asking God to hold me up. I am asking God to give me moments of joy in this midst of these crashing black waves. I will keep my face to Him, but it is a face streaming with tears, agony of heart, gasping of breath. Lead me by your hand down this road Oh Lord. I cling to you. I may even need you to carry me, I don’t know that I can will my feet to move forward into that darkness.
I cling to your promise. “I am in that dark place, Jai. You will be found my me. I am the God that turns darkness into light. I am the redeemer God.”
You don’t know me. I have read your blog now for over a year. Today I am devastated with you. My Husband and I are on the registry because I read this blog. I have wept in your behalf many times. I love the smile of your sweet baby girl. I too have faith in God but also know the intimacy of death and pain. I lost a brother. I sent my love. In this moment I shed tears of grief for you and your family. I remember the darkest places in your behalf and celebrate the greatest joys. It will never be enough but I want you to know that I am out here. A stranger to you. Im sure that there are many more. For all of us there is love. I offer that at least.