Growing up, as the days grew near to Christmas, my brother, Patrick, and I would be wild with excitement. In the last few days preceding Christmas, I would abandon my room and take up post on his top bunk bed, going to sleep at night dreamily gazing at fuzzy orbs of red, green, yellow and blue reflecting against the ceiling from the Christmas lights lining the roof outside. On Christmas Eve we were so giddy we could hardly fall asleep and seemed to wake up repeatedly only to slump back to bed once we realized it was still the middle of the night. In the final hours, before the time we had negotiated with our parents, we would lay on the floor, chins in hand, staring at the clock with the red digital numbers and faux wood grain siding. Our joy and anticipation of what lay under the Christmas tree downstairs was uncontainable. We took great care to contemplate all the joyous possibilities.
The last several mornings I wake with a shocking pounding of my heart. I check my phone, it’s 4:36am, it’s 3:56am. I lay there with eyes wide and the disturbing sensation of a thump in my chest that seems too palpable. I tell myself to go back to sleep, it’s a long time before 6am when I will rise and that will be the time to get her labs. Even as I lay down at night, I know the morning is coming. There is some clicking sound that keeps waking me. I am convinced the nurse is in the room with the familiar click followed by the sound of the blood pressure cuff expanding telling me 6am vitals are underway. It’s the time of reckoning. I lay utterly still, ears alert, straining but hear no more sounds. It’s just the refrigerator. It’s not even close to 6am. I force myself to go back to sleep. My bladder demands I wake and as I round the corner into the bathroom I scan for a white sheet of paper – maybe the nurse printed labs early and it’s lying there waiting for me.
Allistaire’s room is decked out in Christmas joy – tinsel, ornaments, pink tree and battery operated Christmas lights – some cheerily blinking their bright colors, others transforming slowly from one array of colors to another. But just underneath that holiday cheer, underneath the sparkle of snowman tummies and reindeer hanging from the IV pole, the anticipation courses in an altogether different direction. While it seems all the world around us scurries about in final preparations for the biggest holiday of the year, our life ebbs one single day at a time, one lab draw to another. One 6am to the next 6am. Christmas is a blank day on the calendar. It lies in an altogether different realm. Christmas feels more significantly like next Thursday and Thursday dwells on the other side of Monday.
Every day in rounds the resident doctor repeats the same line, “awaiting count recovery.” That is our plan of action. We wait. Here we are on the 30th day of this round and Allistaire’s ANC (Absolute Neutrophil Count) has been on the rise. Her marrow is recovering. Yesterday it was 157 and today it was 171. It needs to be 200 in order to have a bone marrow test and in anticipation of this, she is scheduled for her bone marrow tomorrow morning at 11:15. This time they will take samples from both hips in order to ensure a sufficient sample. In the past her marrow has been so fibrotic, it has been difficult to even get enough aspirate to test. They will also be giving her intrathecal chemo which is chemo placed directly into the spinal fluid.
There are essentially four tests by which her cancer could reveal itself – in her peripheral blood in the form of blasts which would be seen in her labs, in her bone marrow as seen under the microscope by a pathologist and/or through Flow Cytometry, and/or in the PET/CT scan which is scheduled for 8am on Monday. Each day presents another opportunity for the unseen to become seen. Each day I scan down the long list of items quantified, hastily pursuing the one number that matters above all else – Absolute Blast Count. Our whole life feels balanced on these tiny pinpricks of numbers, these infinitesimal objects that determine the course of her life.
It’s finally 5:45 am and I reach over to turn off my alarm. I do not spring from bed. I do not slowly rise. I lay there, still, looking for the face of Christ, calling out to Him. I survey what I know to be true about Him. I consider His Word. I reflect on how He has cared for me before. I fix my heart on His promises. It is becoming less hard to yield. But the thought of losing Allistaire has lost none of its sting, its slice, its atom crushing force. My heart pounds and I gather on my armor, knowing I may be run through with the blade, but miraculously, I am incapable of utter defeat. I carry the quiet power within me, conscious of the ripping pain that can still penetrate. My feet hit the cold linoleum floor and the day has begun, but the battle started while I lay still.
So much bounty. “You’re on the VIP mailing list Jai,” Marie, the Unit Coordinator, tells me. “What does that mean?” “Oh, you get so much mail, more than anyone else.” The packages pile up on the floor. The envelopes keep coming filled with words of compassion, love, delight, faithful prayers and tangible helps. Every need we’ve had has been met, not just sufficiently, but abundantly.
Allistaire herself, is also doing remarkably well! As of today, she has finished her 14 day course of the antibiotic, Cefepime and ethanol locks on her lines have been discontinued. This alone means a far quieter night that now only requires vitals and labs. Because she is such a rock star at taking all her meds by mouth and drinking her required 44 ounces a day, she has also been taken off IV fluids and is completely detached from her IV pole. What glorious freedom this is! Allistaire’s appetite continues to improve and she gained .3kg over her intake weight. Perhaps most phenomenal are the results of her Echocardiogram and EKG. All her cardiac function is doing excellent, which is especially amazing in light of the chemo she had, mitoxantrone/blue thunder, which is well-known to be hard on the heart. Her ejection fraction prior to this round of chemo was 65, now it is 63. Her shortening fraction started at 33 and is now 32. I am in awe of how well her heart has held up thus far! God has not stopped pouring, and I mean literally, pouring out His blessings on us! Allistaire goes throughout her day with silliness and joy, ever in hopes of playing tricks on the staff. She rides her bike around the Unit unfettered, pink, yellow and blue butterfly wings aloft behind her, vampire teeth firmly clamped in her mouth and my constant exhortations, “Slow down Allistaire!”
I think it is this radical contrast of such a thriving, vibrant being and the real possibility of the life being drained from her by cancer that causes such dissonance in my heart. How can the two possibly coexist? But this is what I face each morning with labs, as I wait for each test result – the beauty of her bright smiling eyes with the knowledge that Beth has gone home without her son after just shy of a year in the hospital and three bone marrow transplants. The living can die. We are not exempt. God does not promise to open the doors before us.
Allistaire and I watched a Disney movie about a grizzly bear and her two cubs today. We just decided we liked it so much, we might watch it together again tomorrow and this time it won’t be so scary because we know the outcome of the story, the big mean male grizzly does not find the sweet little cub and tear him to pieces. The story has a happy ending. I dwell within my story and I don’t know all the twists and turns of the plot, but my Father in Heaven has told me the ultimate outcome. It has a happy ending, at least, in the very end it does. Sometimes the anticipation caused by ever balancing on a nimble edge over a cliff is exhausting and all-consuming. I may fall, I may not. It is time to get to bed and face another set of labs in a few short hours. I may fall, but I won’t be dashed to pieces. My anchor is in the Lord.
We are thinking of you in these days of waiting and of Christmas. Love the Tapson Family
Is there a non-VIP who could use a little Christmas cheer? We don’t have much, but the Bedfords can sure color a card and love on you AND someone else in need of the reminder of grace and abundance in the midst of hardship! Love you, Jai.
Your faith has always been and will continue to be forever an inspiration. We pray always for that beautiful warrior but also know how thankful we are; you helped keep us focused on God when needed most. I despise the circumstances with all my heart although am so incredibly thankful for your family. I know it’s off so little consolation where you again sit but please don’t ever forget the positive impact you have had on those who so desperately needed it. We’re by your side!