September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics. The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action. Read more about this series and childhood cancer HERE.
By Kelly Green Erlain
“We think she has leukemia.” Huh? But, she’s only three months old. I’m still confused as to why an oncologist is in the ER with us in the first place and now he’s saying my baby has leukemia. I can’t make it work in my head. He continues, “Forget everything you know about leukemia. This isn’t that kind.” They think she has about a 20-45% chance of survival.
It is late afternoon on a Friday; Halloween, to be exact. We’re in a children’s hospital and everyone is dressed in costumes. The festive mood is surreal. I think I’m crying loudly as we walk to the ultrasound room so they can get more pictures of Reese’s abdomen. Apparently there are so many leukemia cells in her body that her blood can’t hold them anymore and they are inside her liver and spleen, swelling them to a dangerous size and smashing her other organs.
Nurses are in costumes and they stop to smile at Reese as we go by, until they see our faces. We’re not celebrating anything.
Reese is later taken for a bone marrow biopsy to confirm their suspicions. We’re told it’s a formality. There is little chance it’s not cancer. Her white blood cell count is so high and her hemoglobin is so low, they aren’t even sure she’ll survive through the weekend. They can’t believe she hasn’t already had a stroke. We can hear her screams through the door.
Reese spends a few nights in the PICU getting stabilized and starting chemo. Family flies in to be with us since we are on vacation in Arizona. We need to get Reese on a medical flight back to Chicago and she has to go in the next two days or we’re going to be stuck there for the next year. We sign forms saying we understand that the treatments will cause damage to her body and brain, and could also kill her. This is worse than our worst nightmare. This is something we couldn’t have even imagined.
We eventually get Reese back home to Chicago. She is taken directly from the airport tarmac by ambulance to Children’s Memorial Hospital. Reese continues to get sicker and sicker. Eventually she is asleep all day and all night and in too much pain to even want to be held. She doesn’t play with us or smile or coo at us. She is only four months old and when she opens her eyes they are full of pain. The doctors try to help us manage that pain and tell us that the chemo is working.
That’s the thing about cancer and chemo; you have to get worse before you can get better.
We entered the hospital on Halloween and didn’t leave until the day after Thanksgiving. We were so excited to go home, until the reality of being home with such a sick baby hit us. There were boxes of medical supplies and a home health nurse to help us get everything set up. She was so overwhelmed, she grabbed her head and said, under her breath, “Oh my God, this is so much medicine.”
For the next eight months, we were in the hospital more than we were home. We always had a bag packed in case Reese got a fever. These fevers usually came on in the middle of the night and she had to get to the hospital right away. The oncology waiting room, inpatient unit and outpatient unit were always full. We always had to wait for a bed. Always.
How did I not know there were so many kids with cancer?
Part way through treatment, her oncologist suggested to us we should consider a stem cell transplant. It carries much greater risk than the chemo only protocol, but it would increase her chances of survival to 70%. It was an agonizing decision because it involved total body irradiation, meaning her developing brain would also receive it. It felt like we were making a deal with the devil, in a way. Better chance of survival, but a long list of side effects for her to deal with the rest of her life. During a particularly difficult meeting, her oncologist said to us, “She has to be alive to deal with those side effects.” We decided to do it and hoped that one day Reese would understand the decision we made for her.
Reese had her first dose of radiation at ten months old. She would start screaming as we walked down the hallway. I had to lay her down on a table. Two techs would strap her down and we would all leave the room, closing a heavy steel door behind us; a door that protected us from the poison in that room. We did this eight, gut wrenching times. I still can’t breathe when I think about her screams coming from that room. Those screams still give me nightmares.
On May 26th, Reese got her new stem cells. A mother donated her son’s cord blood at his delivery and those cells matched Reese perfectly. Four years later, those cells are in Reese’s body, so far keeping her cancer away. Those cells were literally the gift of life.
I wish I could say I always knew Reese was going to make it, but I didn’t. We sat in so many meetings listening to and signing papers acknowledging we understood all the ways the treatment – not just the cancer, but the treatment – could kill her. And if it didn’t kill her we understood all the ways it could and would damage her. She was so brave and she fought so hard, but she was a baby. She was a baby who was getting sicker from the poison that was the only way to make her better. Reese went through hell to get better and it was horrifying to watch.
Fast forward five years. This year is a big year for Reese. We’re going to start seeing more side effects of her treatment. At the same time, we’re hitting some big milestones. Reese started kindergarten. She walked into her classroom with her backpack on and quietly told us she was fine, that we could stop fussing over her. We left with tears in our eyes. Not tears of sadness that our girl is growing up. We left with tears of gratitude that we made it to this day we feared we would never see, silently hoping for many, many more of these first days for her.
If you’ve missed any posts in Childhood Cancer Stories: The September Series, you can find all of them catalogued HERE.
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