Yoni has a knack for asking perfect questions. On Monday night, his pointed question really said it all.
We arrived at the hospital at 9 am and waited in a long, snaking line for a blood draw in the IV room. Mondays are especially chaotic at MSK and every waiting area was overflowing. There were no available beds or seats, but we managed to find Toby’s favorite, tiny footstool and wedged it near a closet outside the finger-stick room. Toby calls this footstool “blue cubie,” and they have become fast friends. Stephen and I watched as Toby and blue cubie discovered the wall-mounted pneumatic tube that transports blood from the 9th floor to the stat lab below. It was elevator and subway ride all rolled into one and Toby was transfixed. We were grateful for the diversion, and though it didn’t quite qualify as school, at least there were numbers and engineering involved.
Many hours and countless visits to the fish tank later, the readings came back: once again Toby needed both blood and platelet transfusions. Last week Toby won the award for lowest platelet count ever recorded on the pediatric floor: his platelets were 3 (yes, that’s 3) over four consecutive days (normal is 180-400). We’ve grown accustomed to seeing the chicken-soup-colored bag attached to Toby’s line, but never with such regularity.
So it’s noon, we’re already exhausted from keeping Toby occupied and are just finding out that we’ll be at clinic for at least another 4 hours for pre-meds, transfusions and monitoring.
Problem #1: Toby’s first radiation session is scheduled for 1:45 in a completely different part of the hospital. Platelets take about 45 minutes to transfuse; blood can take up to 3 hours. Our nurse suggests we start with platelets, unhook Toby from the IV, go to radiation, and then return for the blood transfusion.
Still no available beds, so we drape a sheet over the waiting room loveseat, pre-medicate, start the platelets and settle in with a Mario game (thank you, Uncle Greg and Aunt Sheri!). We keep careful watch for fever, hives or breathing difficulties.
1:30, Unhook, go to Radiation.
Problem #2: Toby is neutropenic, which means he has zero white blood cells to fight off infection. He shouldn’t be exposed to too many people, for fear of picking up a virus or bacteria that would land us in the ER with a guaranteed hospital admission. The waiting room in Radiation is packed.
Problem #3: The Radiation Oncologist informs us that there’s a delay on the machines and we might have to wait for an hour or longer. Sot it’s back to the 9th floor for blood. By 5:30 the bag is empty and we return to Radiation where we wait for another hour.
Problem #4: The reality of radiation begins to sink in when Nicole, our Child-Life liaison appears and casually mentions that we won’t be allowed in the room while the treatment is taking place. I’m still wondering why Toby didn’t receive the permanent tattoos that are customarily inked to indicate the exact position for the beam. Instead, his shoulder has been repeatedly marked with different colors of sharpie marker. Some of the marks have blurred or rubbed off. It suddenly seems haphazard, like the doctor’s words that radiation will be the least problematic part of Toby’s treatment.
The technicians position Toby’s small body on the hard steel slab and rotate his shoulder into place. They measure the distances with a plastic ruler. The doctor calls and tells us that the prescribed dose will be 2000 times stronger than what is used in a chest x-ray. And Toby will receive this dose twice a day for 7 days.
At 6:30 pm, 4-year-old Toby lies alone, half-naked in a room with 2-foot thick steel walls. He is awake, determined to be still, accepting the “energy ray” that beams into his shoulder, while Stephen and I tell him stories through the intercom. We can barely put the words together as the guilt, fear and nausea wash over us. In a few minutes it is over and we shake with relief.
On the way back to Brooklyn, I am so grateful to be headed home, so relieved to have my sweet boy on my lap, so overwrought with emotion, so desperate to appease my sickening sense of guilt, that I ask Toby if there is anything in the world that he wants. He is quiet, thinking. I want to give you the moon, the stars, the rest of your life with no pain. Toby is silent, and then he quickly says, “I think I would like a cherry lollipop on Monday and a strawberry one on Wednesday.”
We arrive home at 8 pm, barely able to drag ourselves up the front steps, barely human. And on the kitchen counter, is the most beautiful meal, prepared by a loving friend. And it is still hot.
It is now Friday, at the beginning of a new year. We have made peace with this treatment. We still chafe at the euphemisms, but Toby actually enjoys going to the 2nd floor to receive his "ray." He started eating this week, some of the delicious food that has graced our table during the holiday. Next week is a busy one: 5 more rounds of radiation and full restaging scans... a CT on Monday, echo on Tuesday, MIBG on Wednesday and bone marrows on Thursday. We are so grateful to all of you for continuing to care. You are an inspiration to us and remind us daily that we are not alone. Shana Tova and HOPE.
Love, mooki and stephen and yoni and toby
Ed Clark, Christmas Guest
9 months ago