Thoughts and feelings, observations hit like a gentle smattering of shotgun pellets, if such a thing is possible. My hands run lightly over the bent arches of grasses. I circle Ravenna Gardens like a crack addict in a back alley, longing for the day when I can, once again, be surrounded by plants. I calculate when I can buy a fern: September 18th; 3 months post-transplant. I went grocery shopping for the first time in five months. Real grocery shopping – I bought baking powder and flour, determined to make pancakes. Chocolate chip and apple pancakes with wheat germ have not entered my mouth in five months. The last time I made them was for dinner on Tuesday night, February 19th, knowing it might be the last time we four gathered at the counter to feast at home. Allistaire has slept in a bed for the past six nights that has no capacity to contort into a hundred different positions, yet a line runs down from her chest to a pump delivering 25 ml of fluids each hour. We’ve already been to Target three times this week as I seek to stock up on all the things I haven’t had to think about in forever: toilet paper, wipes, Pam cooking spray. With care I wipe down every surface of the cart I imagine Allistaire might touch and then I lift her enormous 17.5 kg body into the seat. Out of my periphery, I see heads turn to look at the little bald girl. This is homelife-ish.
I make breakfast in a strangely equipped kitchen, lacking measuring spoons, a colander and a decent can opener. But before breakfast comes the process of matching the rinsed syringes with their proper bottles, referencing the med list and refilling them to correct dosages. I bring the pile of syringes to Allistaire, along with two mini-marshmallows. Every single time she fights me and cries and says it’s yucky. “I know it’s yucky, but we have to do it.” The line between health and sickness ever blurred. After threatening to take away Doggie, she yields and in quick succession I push out the contents of 12 syringes into her mouth, followed immediately by the marshmallows. Scanning for rashes and any changes in her flesh, I change her out of jammies into clothes for the day. Soon the pump begins its relentless beeping, indicating the empty state of the “reservoir.” I disconnect the nighttime fluids and flush her line, first with saline and then with heparin. At breakfast, she eats voraciously at the beginning and then inevitably drops her head, her eyes sad slits as she holds her hand to her strangely distended tummy, now too big for even size 4T. Sometimes she gets a second wind and often I wrap up what’s left to be gulped down later with her next wave of hunger. Crankiness and an amazing appetite – oh the joys of steroids. Every detail of food and liquid I record on the sheet stuck to the fridge. I want her to get credit for every last calorie and millilitre of liquid. I even calculated how much liquid she gets in meds and was dismayed as I stared at the number on the calculator. All those 23-something doses of meds only equates to about 2 ounces. She requires 43 ounces of fluids each day to help keep her kidneys up to flushing all the gunk from the meds through her system. Try as I might, I cannot seem to get more than 30 ounces in her a day, hence the need for night-time hydration. I clean up the kitchen, rinse the syringes and record the one or two poopy diapers that come like clockwork each morning. I circle picture #6 – soft and formed. We are now ready to begin the day.
“Can I watch a movie,” she asks as she stands before me, Doggie and piggy in each arm. “No. You’re not in the hospital anymore. Why don’t you go play with some of your toys?” She cries. I am mad and want to hold her and press her to me all at once. I think to myself, “You’re not sick anymore. We have to move forward. You need to start living life like a normal three-year old.” But my heart hangs laden as I take in the view of her sweet, warm bald little head with the sporadic white hairs. “Are you sick? I have no idea.” I have no idea if this sweet girl just needs time to mend or if this is simply a beautiful lull in this brutal storm. Either way I cannot comprehend what has been done to her insides. I have no clue what it feels like to have poison dumped into your veins for five months. Of course she wants to watch a movie. She has spent the majority of each day in bed and watched no less than three to four movies a day for months.
I did not anticipate the weight of the fatigue. I still get up every night around 1 or 2 am to give her meds and change her diaper but surely with no other interruptions I should be getting better rest. Yet, I wake up shockingly tired. I cry more than I feel I should. I tell myself, “You’re not in the hospital anymore. Her bone marrow was clear twelve days ago. You should have only room for rejoicing.” I cry, slow, silent hot tears as I sit out in the sun on a glorious afternoon. Solveig makes quick friends with the little girls in the lake with the raft and spends long minutes constructing an ever precarious sand castle with another girl who comes prepared with shovels and bucket. I feel a slight sense of failure as a parent who has provided none of these for my child. Families surround me and the smell of charcoal is distantly detectable. In the glaring contrast of sun and shadows, I feel the stinging prick of sorrow. Somehow summer’s brightness serves to illuminate the deep sense of loss. I grieve and I berate myself for doing so. Blurred lines. Rejoicing overlapped with layers of sadness. Abundance and victory sown through with declarations of defeat and tears and rips. Yes, I sit here in Tutta Bella on a sunny Sunday afternoon, enjoying the meal I would I would choose if it were my very last, a Napoli salad without the gorgonzola and fresh mozzarella added. But I feel like screaming until my voice is silenced and my throat ravaged. I just want to be home. I just want my family together. I just want to do ordinary things. I am sure I looked a fool as I walked down the sidewalk at U-Village, eyes closed as I soaked in the sensation of cool winds ruffling across my arms and through hair, the bright warmth of sun laying across my face. These days have made my whole being more attuned. My senses have deepened and broadened, the caverns torn open to receive. Just to be alive is spectacular. Everyday my marrow busily creates approximately 200 billion new red blood cells! I am stunned to be so attuned to the simultaneous wonder and pettiness of what it is to be human. I am in awe that four million dollars has been spent on my one child – an incredible proclamation of how much we value the life of one individual. I am shamed by my envy over perfect thighs, utterly lacking cellulite, of the girl waiting for her coffee. How can I care about dimply fat? But this is how we live, spanning all layers of vantage point and value.
The same circumstances that have wounded my heart and left it tattered, the ground violently ravaged by the plow, have made gaping depressions swelling with amazed thanks. As I floated through the airy sights of Anthropologie, Solveig off smelling the myriad of candles, Dr. Park came into view. There she stood, an ordinary person out shopping in the early evening, wearing a red tank top like it was the most ordinary thing to do. “I heard your good news,” she said with a smile. It was all I could do to hold back the tears and simply thank her. I mean to write her a letter, and not just she, but all of the doctors that have been part of our journey. We only had her as our attending doctor for two weeks, over a year ago, and yet, like so many doctors, she has rejoiced with us over this victory, and no doubt grieved over the defeats. That she would be able to pick me out in a store, outside the context of the hospital, and connect me to Allistaire and know how my one little girl is fairing, is well, humbling, glorious. I bend low with tears and gravity of gratitude for the innumerable people who have given of their lives to come to the aid of one little life who is infinitely valuable to me. More tears fell this morning in Starbucks as I read this sentence, “The first protocol was launched to test different doses of Farber’s methotrexate combined with Burchenal’s 6-MP, the two most active antileukemia drugs.” I am a little over a hundred pages into one of the most fascinating books I have ever read, “The Emperor of All Maladies,” by Siddhartha Mukherjee. I am learning all about the history of cancer. It is fascinating to see the significant role that childhood leukemia has played in the development of cancer treatment. Unlike other cancers, you cannot wield a knife and cut out leukemia and so everyone with leukemia was simply sentenced to die. But the glorious quality of leukemia is that it is measurable in a way that solid tumor cancers are not. For decades a man named Sidney Farber was hot on the trail of trying to discover what sort and combination of chemicals might bring about the death of leukemic cancer cells and produce a sustained remission. “Farber’s methotrexate.” Allistaire has been treated with methotrexate. Allistaire is directly indebted to a man who was hard at work over 70 years before she was born. There was a man who worked countless hours with absurd amounts of defeat and few victories, whose efforts would one day directly benefit my child. Does it not blow your mind? Who are we to receive from this one man who gave his life to this work, lifetimes ago? As I now repeatedly, drive downtown to SCCA (Seattle Cancer Care Alliance), I take in the view of innumerable windows of the Fred Hutchinson Cancer Research buildings that surround. I imagine the scores of people who come to work each day, who labor hundreds of thousands of hours to bring about the end of this brutal disease. I wonder how many of us, how many of our children and great, great-grandchildren will be the recipients of their efforts and endurance. I grin as I imagine the moment when one thought gets connected to another and a remarkable discovery is made. I grin as I imagine God’s grin as He watches the beauty of His plans unfold. “Thy Kingdom come, Thy will be done, on earth as it is in Heaven.” Amen and Amen.
Thank you again for sharing these raw and horrible and beautiful steps in your journey, Jai. That I am praying for you and thinking of you feels so inadequate to say here. Allistaire’s story continues to reach beyond the walls you are living in, even while you long for home. God is glorified as I share your good news with my kids around our dinner table. My parents and close friends check with me for updates updates on a three year old they have never met so that they will know how to pray. God is working in ways we can’t comprehend. Thank you for sharing, grieving and rejoicing here.
Prayers for all of you!
God cares! Read Psalm 3:3. Love and prayers, Sharon
Your faith and your strength as you walk, and at times trudge through this part of life’s journey amaze me. You have helped me grow in ways I never dreamt possible. My prayers are with you and your household each and every day. Love and many hugs from Kathy,
Love to you, lifting you up as you learn to transition back to life, with all its dimply fat. You can come look at my thighs sometime. You won’t struggle with envy. 🙂
We live in Chicago,Il and heard about your blog. We have followed your journey and pray for you Thank you for your honesty and your commitment to keeping us all informed. You don’t know us but we want you to know you have many people praying for you please post your prayer request.
Love the sound of normal pancakes in a kitchen! I want some ice cream with Solvieg & Allistaire too – wish we were closer so we could do that!!! Love you all,
Wow Jai, your Obliteride funds are almost at the $11,000 mark. How awesome! Praise God who uses all for good. I pray that your downs climb back to joyful ups! Though life will never be like it was , God will provide His peace and the courage you need to live this new life — and He will provide new joys and blessings along the way. “Be strong and courageous, do not be discouraged, for the Lord your God will be with you wherever you go”