Brilliant. Delightful. Compassionate. Witty. Inimitable. Louie....
We awaited the results from a quick CT scan for our 9 year old to tell us, of course, his headaches over the past months and one week of vomiting were nothing of note, only the hypochondriac musings of parents of only one, absolutely perfect son. We were right about one thing; our intuition to push for this test.
The scan showed a mass in his fourth ventricle. We sat in the room waiting, not long, ten minutes. Happy. Certain it was nothing. Our pediatrician called with the news. My husband turned white, Louie and I stood up and started dancing, a feeble angle of distraction. The next hours were incomprehensible. Louie was surprisingly stoic; he has that innate sense, when things get most chaotic he seems to be unyielding. We were admitted that evening. MRI the next day. An 8 hour surgery 3 days later. They suspected medulloblastoma and our neuro-surgeon came out to share that it was removed easily, nothing on the spinal cord - "It lifted right off". He was awaiting our sigh of relief that never came. We were too high strung, anxious, sick.
The next months were filled with 30 days of radiation and chemotherapy. Some school, lots of sleep, nausea, not enough eating, odd pains, zillions of doctors visits. But, the cancer was gone, this was all insurance that it never returns, that was the restlessness. Maintenance chemo and clear MRIs. We weren't even worried - of course they would be clear. Louie would struggle through this with perseverance, resilience and an incredulous story to share. Until the MRI wasn't clear in May 2015.
And now the knowledge of our reality pervades every moment. No known or obvious cure. Experimental medicines. We are engaged and outwardly positive but unequivocally devastated. We talk about the future; where he will go to college, his plans to adopt children, what kind of ring he imagines he'll give his future wife, what coral reef we will see, future paths of interest. He asks why this is happening to him occasionally. We can only answer that we don't know, bad luck and how we wish it were us instead. Louie said "if there is a g-d and if there is a heaven, I'm going to ask". I answered deftly "Great question. You'll have to remember that when you get there in 80 years".
At first, when his motivation waned during those intense moments, I pontificated the difficultly for a kid, not comprehending all of his future selves. And now I realize his beautiful, untouched, sanguine view of the world and its vastness is more inspiring. His failures slight, his heart whole, his dreams waiting for him to reach out and grab them.
We have our 4F's. Fight like hell. Friends and family. Fuel. Faith that this will work, it has to work. We cannot face the alternative. So we carry on with stiff upper lips, hearts irreparable, consciously ignorant of the future, memorizing the moments.
Louie is driven to help; incredibly compassionate. In fact, years before this he would forgo birthday gifts from his parties and ask instead for donations for the hospital. I'm haunted by the foreshadowing of it all.
I consumed a lot of information at the beginning; mostly about how positive and resilient these kids are. I was utterly perplexed but assumed people shared the best days, the best seconds; the worst are unbearable even to ourselves.
This project is to share what 30 Days of Cancer looks like. The lovely, the heartbreaking and the absolute.
Email firstname.lastname@example.org re: the 30 Days of Cancer project.
A very small % of government funds go to pediatric cancer research and the private side is very fragmented. Here are some ideas.....
www.nationwidechildrens.org/individual-giving (note cancer research)
All photos on this site were taken by Alisa Becker.