We finished Interim Maintenance last week, a two-month(ish) stretch that had scheduled hospitalizations for chemo. Some included a spinal tap, some didn’t. It’s all starting to run together a bit now, to be honest. The chemo that was administered was rough on Eli. Made him sick like clockwork, but once we were home and it was out of his system, we started to see the real him again for the first time in a long time. We got to enjoy our summer together—or at least enjoy it more than the past few months. We swam at friends’ houses, and even got to go to a few movies. I’m so glad Eli was in this phase for summer because the movies he had been looking forward to seeing were released (Teen Titans Go! to the Movies, Winnie the Pooh, Hotel Transylvania III). Crowds were still a no-no, so we went when the theater first opened for the early matinee and E wore a mask unless sitting down and eating popcorn during the movie.
While in the hospital, we figured out ways to occupy our time—lots of youtube Minecraft videos, movies, popcorn, legos…energy levels spiked and waned so it was oftentimes difficult to anticipate what would be needed for the three-day stretch. Sometimes the need for entertainment was incessant. Others were more low-key, so we just cuddled in the hospital bed. E always looked forward to the therapy dog visits and started collecting their cards. The Roughriders also paid him a visit with Teddy the mascot, and volunteers stopped by frequently with gifts of soft blankets and snacks.
As August grew closer, Phil’s and my apprehension grew because the next phase was Delayed Intensification. It was heartbreaking to talk to Eli about the new meds he would have to take and how he might not feel so good for two months only to have him laugh and say, “I won’t be sick, Mama, I feel good!”
But during that “good” time he got to attend Camp Esperanza, a week-long camp for children undergoing active treatment for cancer. He got to be a normal kid. Not the sick, bald kid as he sees himself at home, but rather someone like those around him, having fun ziplining, horseback riding, swimming, fishing, and running around. He came off that bus dirty, smiling, and wearing someone else’s pants like a man coming off a weekend bender. It was the best thing I had seen since this all started.
And now we have started the new phase. Meet the Teacher night has come and gone, as have the first and second days of school. “Eli Monkey” is trekking to school once more with Sara while the happy, energetic Eli of the summer slowly fades. It’s worth it. We know it’s worth the fight and the pain because this phase is supposed to increase survivability and decrease the chance of recurrence. But what you know and what you feel can be vastly divided. Despite how hard the steroids and additional meds and chemo are hitting him, Eli still smiles. Still laughs. Still talks about growing up to be a Daddy…
Two more months. One day at a time.
bELIeve in hope 