Note: The below was written by our friend Marge who spent the day with us last Friday, September 21st. It was the day of Liam’s bone marrow test which was the last test in the series he undergoes every 90 days. It also was the last day of his fourth round of 3F8 antibodies. (One round consists of five days.) Last Friday was a particularly grueling day. Liam was fine…in fact was quite the comedian who was the shining bright spot in what was a very dreary day. It was one of those days where everywhere you turned you saw or heard pain. I felt like Edvard Munch’s painting, “The Scream.” I pictured myself being that painting. But instead of screaming, I went into “hospital mode” which combines a protective shield of nonstick coating with invisible covers for my ears and a conviction to keep moving…just keep moving. I also wanted to tell Marge to leave…not because I didn’t want her there but because I wanted to protect her from the bombs of bad news landing all around us. A while back, someone we don’t know but very much appreciate posted a quote from Sir Winston Churchill on our blog that has kept me going through the last seven months. “If you are going through hell, keep going.”
Liam looks like Liam again….well, Liam, about six months older than when this all began. He is the most beguiling little boy, with big intelligent eyes--framed once again with gorgeous lashes-- perched above creamy round cheeks. The good Prince Liam is also a very busy fellow: there are wooden trains to push and plastic cupcakes to bake; phone calls to make on his pink plastic cell, and nurses to greet and converse with. He has mechanical devices to operate and corridors to navigate. Where ever he is and whatever he is doing, he seems to have a purpose and an agenda, and the energy to accomplish it.
Liam is rebuilding his strength. He has won many battles, but there are more to wage. And sadly, wrenchingly, all around him are children in various stages of those battles, and each and every one of them is a reminder of how long and gruesome this war truly is.
This past Friday morning began with a bone marrow test. Gretchen handed him over to the attendants, returned to the tiny “bone marrow” waiting area and with a wry smile said, “Nothin’ like dropping your kid off for anesthesia.” Even the tests have risks, and every time your child goes under, you worry.
Worry and anxiety are palpable here. We wait with a handful of parents. Two mothers stand perched against an empty stretcher. As they talk about how some of the other kids are doing, one occasionally swipes at an escaped tear rolling down her face. A young couple comes in with their four year old son in a stroller. We show him Liam’s “puppies” as his story unfolds…They are “newbies” and like many parents here, live a plane ride away. And like so many others, they came to Memorial Sloan-Kettering because their local hospital couldn’t make their child well.
Coming here is no easy task for them, I am sure. They have two other children at home, and the arrangements to be away—finding someone to care for their daughters, who have their own struggles dealing with their little brother’s illness; taking time off work— must add to the nightmare. Coming here is no easy task for anyone. As wonderful as Memorial Sloan Hospital is, it is a place you never want to be.
Gretchen and I sit knee to knee on the little leatherette bench, engaged with the other parents in calmly spoken, alarming conversations.
We learn about a child who didn’t make it. One mother’s tears stream freely; another grows rigid. I immediately think about how different this girl’s situation is from Liam’s… And I see that when you meet a parent whose child is doing well, you make the comparison with hope. When you hear of a child who didn’t make it -- no matter how different the situation-- it is terrifying.
Most of the mothers are young: neuroblastoma tends to strike toddlers and babies. But one mother looks more like me, and it turns out her 18-year old son, who was diagnosed while a teen, has relapsed. Caryn tells me a story about her son getting annoyed at her, and I am struck by how much he sounds like my 17-year-old. We are, for the moment, just two mothers talking. Then she talks about how badly treatment is going, and how anxious she is about the results of the bone marrow test. My gut turns over. It feels like there is a ball of rubber cement in my throat. I want to comfort her, tell her to wake up, it was all just a nightmare. I want this pretty woman with pain in her eyes to have the worries of an “ordinary” teenage boy’s Mom…tell her she better go tend to her son, because he’s all twisted up over a girl and his grades might be slipping. If only that was what she had to worry about…
And I want Liam to come out of that room, RIGHT NOW so we can leave this awful place. We shouldn’t be here, we don’t belong here. Liam is doing great. We need to run away from here. I want to cover Gretchen’s ears. I want to call my son.
There is commotion from down the hall—a child screaming “NO!!!”. They come toward us: a boy of about five, bald like most of the kids here, dressed only in a diaper, holding on to his IV pole, his mother on one side and a nurse on the other. His legs are thick and stiff; his face red and tear-streaked. Through his screams and cries his mother and nurse try to soothe him, to tell him it is a simple test, to tell him he needs it so he can get better. He sobs in fear and anger and distrust, his swollen legs slowly taking him toward the dreaded testing area. He is beyond reason, and the violence of his distress speaks to all of us. He is the physical manifestation, the encapsulated expression, of the fear and terror and anger of all of this.
The four year old boy comes back, groggy from the anesthesia. He cries on and off, telling his parents he hurts, and he says the doctor shot him. We know what he means—the test requires a big “shot” through the skin deep into the center of the bone in order to extract some of the precious marrow. This child saw the scary looking needle used in the procedure.
Liam comes back and fortunately does not remember anything. He drifts in and out as the drugs wear off. Finally, it is time to head over to 3F8 treatment. As we begin to say goodbye to the people around us, I yearn to fold a blanket around Caryn’s shoulders, to tuck her in to a tiny moment of comfort. It is hard to remember she is a stranger: there is instant intimacy when one’s soul is laid bare. I touch her arm and wish her well.
We arrive in the 3F8 treatment room and I see Gretchen has the routines down to a science. This is her fourth round, and she is a pro. Nurses come in and out, adjusting knobs and tubes and dials and talking cancer-speak with Gretchen as we set up the room. Toys go here; lunch goes there. Liam’s books get piled here; Gretchen changes his clothes.
Liam is fully awake and instantly engages everyone who walks in. He has a million questions and a thousand comments. He is earnest and funny and once again, very busy. I thought we’d read some stories, but there is too much to do. A brightly colored cash register is on the window sill, and it is very important that we figure out how many sounds it makes and how many buttons we can push, pull and turn.
Too soon, the 3F8s begin to flow into his body, and he is in pain. Now it all goes in slow motion as Gretchen rocks him, chanting, “Almost over, almost over, almost over”. The tears stream from his eyes as he cries “Owie, owie, owie”. He asks for “Twinkle” and Gretchen sings, rocking him. “My owies hurt!” he cries, and Gretchen closes her eyes, gently rocking and singing. He has learned to stretch his arms above his head, which helps with the pain…but not enough. “Owie-owie-owie!”, and I can see Gretchen, ever calm and soothing, trying to block the pain with the strength of her love.
Slowly, so slowly, it begins to subside, and Liam finally falls asleep. The treatment is over, and won’t be repeated for eight weeks. Eight whole weeks of freedom from 3F8s, the drug that causes intolerable pain even as it helps make him well.
On the way out of the hospital, I see Caryn walking out of the building with her son and husband. She tells me they got their results, and her son is nearly clear. A smile crosses her exhausted face, but her eyes are vacant. She scurries ahead to her family. They have a plane to catch.
This was just one day. One day in the life of having a child with cancer. Imagine if this is what most of your days are like.
* * * * * *
And now it is several days later and I am back to my life a million miles away from Memorial Sloan-Kettering. For all these days, images of sweet Liam’s bright smile, his little hands putting coins in the play cash register, and his creamy cherubic cheeks as he sleeps flutter around me as I make the beds, cook, write, drift off to sleep. And so, too, I am visited by the more harrowing images of the cancer-laden legs of the screaming child; Caryn’s tear-stained red eyes; of Gretchen gently rocking Liam, her eyes closed and her face wracked with his pain.
