Disparate. Discordant. Dissonance.
Turning this way and that, buffeted, battered. Every angle met with contradictory force. Joy, relief, yellow, bright splintered through with black, tears. Flashes of bodies warm gone cold. Flashes of giggles and bright eyes and stiff bodies born down hallways blocked from the eyes of the living. Friends gone. Gone. Turning east, car seats empty. We should NEVER go east without those faces in the rearview!
And I sit in sunny room, a palatial expanse, hum of the dryer and a sudden home, a grocery list and kitchen utensils and a recipe. Sixteen months and the first meal cooked. Not microwaved. Not to-go styrofoam from a restaurant. Ceramic plates. Glasses. Imagine: a refrigerator, a stove, a sink, a table, a child, all in the same room. No flights of stairs to run up and down to heat up yet another hotdog. For the first time in sixteen months, I sat in a cushy chair in the early morn, coffee and book in hand. Wonderment. Grandeur.
I walk out into that cool of night, crystalline stars blue and white, sparkling, not trite but truly, they sparkle. How long since I looked at stars? There, Orion’s belt. Stars countable in a city sky. I walk the 30 feet from the Ron Don Apartments solely for those patients discharged from bone marrow transplants, into Ron Don’s House A. A familiar face and a story. Kidney failure from a culprit whose name I know so well, drawing its milky substance into the syringe, three times every day, waking her every night at 2am. “Allistaire, Allistaire. Wake up sweets. It’s time to take your med.” Up she rises in the dark, half-asleep, trusting, mouth open. And little John, little John. “But I thought they went home?!” my voice a near quiet wail. He bled out. Just blood everywhere. But, but…his platelets? No, they were high enough. His clotting factors then? No. No. His cells just broke open. He bled out. Another family swept away east, empty-handed.
I stumble back through the night air, to my spacious abode, to my bald-headed girl. Bright. Cheery and spinning. And I draw up the meds, again and again and she opens her mouth. Trembling at the huge chunk of magnesium. Shaking at the sight of that fish oil capsule. But you must. You must! Press forward, rush at that pill before it gets the better of you. Defy it. Don’t look at it. Don’t think about it. Just do it. Put it on your tongue and swallow! Can you not hear the pounding of some monstrous hooves? The breath hot and rancid on your neck? The flying of rabid saliva. Run Allistaire! Run child, run! We must keep running, I silently wail. And the ashes of children, children whose voices I have known, ashes of eyes that once were bright, falling, falling all around us. Ashes on our cheeks, ashes in our hair.
And upon the wall I’ve hung the art, the endless rainbows of color. The cheery felt flags and the string of butterflies. I’ve purchased bins, bright taffy pink bins with lids, little woven bins of lemonade yellow. The lip glosses go here and the legos there. Spread out the new Ikea rug across the cold faux-wood linoleum. Set the picture frames upon the tables and cozy up to lamp light.
We escaped. Maybe. But who are we that we should be any different? Who am I that I should be allowed to keep my child? I watch the eyes of my friends. I reach out and know they are impossibly far away. They dwell on the other side of that gulf. People say, “So, one-hundred days huh? And then you get to go home, right?” You see, I never imagined we would even make it to this day, this twenty-eighth day post transplant. Allistaire’s done so well, she discharged from the hospital last Wednesday, February 3rd, in near record time. A mere twenty-two days post transplant and after a short 46-day inpatient stay, Allistaire walked out of that hospital into the light and air of the outside world. And I felt relief and awed shock. How? How did it go so well? How was it so incredibly easy?
The very next day our out-patient life began with a full day of clinic appointments at SCCA (Seattle Cancer Care Alliance). I hadn’t prepared my heart, just read the times dictated to me. Go here, go there, at this time she’ll get her blood drawn, meet with the nutritionist, the social worker, the pharmacist, the nurse, the attending physician. Yes sir, yes ma’am. We do as we’re told, we open our mouth and move our feet to their instruction. I’d forgotten the stares. The stares of adults with cancer taking in the image of a small girl, bald like themselves. A sort of horror and wonder in their eyes as they take in the smooth curve of her cranium, little blond hairs sporadic at her crown and nape, tubies peeking out from under her shirt. I’d forgotten the sight of great swelling cheeks, cheeks that no obesity could fashion, cheeks like grapefruits, the effect of steroids unmistakable; steroids the primary defense against GVHD. She seems to have made it out alive from transplant, but there it is, staring us in the face, the next beast threatening to devour and the perverse desire for it to come. Yes, GVHD (Graft Versus Host Disease), you are welcome here, we invite you, come, come devour, come eat alive the ever-present threat of those mutated cells. And I gag at the thought. GVHD can kill. Kill outright or kill by slowly stealing away quality of life. And yet, not even radiation on par with a nuclear blast, not round after round of ravaging chemo is enough to trust those bastards are gone.
Walking in the doors of that building, going to the 6th floor for the transplant clinic…it all comes sweeping back, a flood of memory, the terror that rose, water to the neck. Abrasive, the memories admonish, don’t let down your guard, don’t feel at rest, muscles stay tense, eyes alert, edgy. When is it coming for her? When will it strike again? Only 50 days after her first transplant in June 2013, her cancer showed itself again. Will we ever, ever be rid of it? Will this crazy life ever end? And you tell yourself to shut your mouth. Your friend, whose hand and the cold hand of her daughter you held, tells you she would given anything to be in the fight again, just to have her little girl with her. So don’t you dare weep for the ravages of your life, for she is with you! She is here! But will it ever end? Oh God, must it end that way to end? She had her Day +28 bone marrow test yesterday and her chimerism test to determine what percentage of her marrow is her own and what is donor. How long might we enjoy this reprieve?
Dr. Cooper saw her in the hallway yesterday, and said, “She just looks SO good!” Words echoed by many, many that have walked long on this journey with her. Yes. Her eyes sparkle with glee. You should have seen the enamored wonder in her eyes as she spun in her new room, her own room in our Ron Don apartment. “I was squealing getting into the car,” she tells me, “all my dreams are coming true!” she grins. I cried when I walked in the door of our apartment for the first time, less than an hour after hugging Stevie’s parents, Keshia and Michael, and grandmother, Linda, goodbye, knowing they had one last stop before traveling east on I-90. They were headed to pick up Stevie’s ashes. And I was headed into a new apartment and post-transplant life. Tears that they had a U-Haul trailer full of Stevie’s toys, toys to pack away in a storage unit, and I, toys to pull out of boxes to set up in anticipation of Allistaire’s joy. Tears that we have this gift we’ve done nothing to deserve. Tears that this present lull in no way guarantees we have escaped the same outcome. Tears for a home that is not home. So weak the prayers, “Oh God.”
Allistaire is doing wonderful so far. She has clinic days at SCCA each Monday and Thursday, with frequent lab draws in-between due to the ongoing need for transfusions, especially platelets which are the last to recover. She engrafted on Day +20 with an ANC of 2050. Her ANC has since dropped due to no longer getting the GCSF (Granulocyte Colony Stimulating Factor) infusions, but today was 630. Allistaire has not had an ANC that high for nearly a year and a half. Her medications continue to be adjusted as drug levels are taken and electrolytes change. She gets 35 doses of meds per day which include the immune suppressants tacrolimus, and mycophenolate mofetil (MMF), hydrocortisone to compensate for the insufficiency of her adrenal glands, acyclovir to protect against certain viruses, voriconazole to protect against fungus, dapsone to protect against pneuocystis, ursodial to protect her liver, fish-oil to reduce her high levels of triglycerides, vitamin D supplements and a multivitamin. For her heart she takes hydralazine, isosorbide dinitrate, carvedilol, lasix, spirinolactone, magnesium supplements and Entresto.
Her higher ANC betrays the true weakness of her immune system. Because her transplant wiped out her immune system, it also wiped out the immune effect of the vaccinations she has received, with the exception of chicken pox because that lives in the nerve cells. It will take an entire year for her immune system to fully reconstitute. Only then will she be able to get re-vaccinated, for the third time in her life. For this reason, for one year post transplant she is not allowed to attend school nor any event or go to any location with a high density of folks. We venture out with caution, at off times, mid-day, mid-week when we must go to the store. She cannot dig in the dirt, cannot frolic in the grass, must avoid house plants and all sources of fungus. Her food must be more carefully washed and cooked to avoid food born illnesses such as E. coli, Salmonella and Listeria.
We walk forward in hope, though it is not a bright and refreshing hope. It is the hope of the hunted. It is hope that there may still be a way through, though the dangers great. It is a hope permanently stained with images of those who have fallen, images of tear-stained faces of friends, bodies lining the road behind. It is a hope that feels a bit crazed and frantic, a panting from hard running. It is a hope that yearns for a day when this fleeing may cease and a weapon will have been crafted that can be thrust deep into the heart of that beast, killing it forever. For now, we strain forward, seeking to feel the warmth of sun on our faces, never taking one moment of life and bounty for granted. My prayers are short. “Thank you God.” Thank you for this ice amazingly ever available in this freezer. Thank you God that every time her platelets drop there are platelets ready to replace the empty space. Thank you God for an oven to bake cookies in. Thank you Father for that giddy joy she has as she places the chocolate chips in the pancakes. Thank you God for the hope that we will see Solveig soon. Thank you God that Allistaire is almost 6 years old. Thank you that though we have been chased relentlessly for four years, her life has tripled from what it might have been. Thank you God for every time I get to hear, “I love you Mommy.”
And I cry out to the Lord on behalf of those who have lost their little beloveds. Oh, Lord. Oh Lord. Have compassion. May your Spirit go out from you and dwell within those broken, bleeding hearts. Comfort with the comfort that only You can yield. And do not turn away from this ravaging, God! Come quickly! Bring an end to this brokenness. Redeem the loss. Raise the dead. Bind up the wounds. Put an end to the curse and bless. Wipe away the tears. We are expectant for You!
And Father, though we run as those chased, let us simultaneously find our rest in You, our only home, our very life. May times of refreshing come to my heart, dependent on You, not on changed circumstances.
My friend lost her baby girl the day before she was to be induced. She had to push out a child not breathing. Only months later she learned she had cancer, at just about the same time she found out another child was on her way. Now there is a bright, smiling baby girl in her life and tomorrow she finds out if her cancer has stayed at bay. Her longing is that she might be singing when the evening comes, no matter the results.
Yes Lord. May we sing out, even as tears stream down, let us bow low and worship and fix our eyes on You.
(Got a call yesterday evening with Allistaire’s bone marrow biopsy results…0% detectable leukemia by Flow Cytometry and 100% Donor Chimerisms in both the peripheral blood and marrow – this means only Sten’s/Donor’s cells are detectable and nothing of Allistaire’s old immune system, including her cancer, is detectable at this point. What an incredible grace of God. Thank you. Thank You Lord!)