It's been nearly a year since we found out Louie's cancer was back. That day, standing in the hallway as the doctor asked to see us alone. I knew. I fucking knew. "Not hopeless" they said. We cling madly to that.
I often have a dream, the scene alters but the emotion sustains. I'm running from something or to something and it's as if my feet are mired in sludge and responsibility. I can't get there. Wherever. Anywhere. I strain and exhaust myself, but cannot move any faster than murderously slow. I've always had this dream. Now from dreams to days, but mostly I'm okay with stretching the time.
In the last year Louie has had surgery to implant a port in his head, chemo delivered directly to his brain, chemo infusions, taken up to 30 pills a day, tried various oils, meditation sessions, injected with shots to build up his white blood cells, blood and platelet infusions sustain him, high dose chemo which rendered him in the hospital for weeks with such pain he couldn't eat, two lumbar punctures to see if his fluid was clear of tumor cells (one wasn't, one was), bone marrow aspirate to ensure his marrow was healthy (it was, just struggling to reproduce due to months of treatment), two seizures that haunt me daily, a second round of radiation, a biopsy to tell us the cancer was not only still there but 'exuberant' as explained by the team, he's been visited (and kissed) by a mystic and traveled for several weeks to Memorial Sloan Kettering for a trial where liquid radiation was delivered to his brain. Continuing to uncover options; we will revel that we still have some. The unimaginable day alternatives halt is also haunting, looming almost. Now we try to get our hands on experimental immunotherapy drugs as well as one we must get overseas and research every trial on the planet to see if he's eligible and moreover if his body can handle it. 6 months ago his Dr. told us no one expected him to make it this far. His cancer got worse, then better, then worse and now better; that should illustrate the transient nature of this. And the absolute volatility.
"I'm never truly happy, there are just things that take away my sadness". He's been exhausted, sad, angry, perplexed. He has said that sometimes he wants to give up but we don't give him a chance. He has said he "feels like he's dropped something along the way and is only just realizing it". In September of 2014, my mother-in-law came to stay with us in an attempt to cheer Louie up as he was halfway through his initial radiation treatments. She said to me, very matter of fact, "your little boy is gone, whatever happens, he will not be the same". I just looked at her and nodded. There were no tears. It was pragmatic, but she was wrong. I would get my Louie back. He would be slightly altered maybe, every day has the potential to change you and should in certain ways, but I would get him back. Except she was right. He's still Louie, a bit of him at least. I struggle daily with the dichotomy of existing vs. living. Most days he's living, I tell myself. We remember the ways he has lived this past year, in between the gnarly and relentless treatments. He graduated lower school, friends helped us create an amazing garden we enjoyed all summer, received surprises from Matt Groening (and others) and got to know some incredible artists from The Simpsons, painted with a rhino, had near weekly visits from the Kona Ice truck over the summer, a Lego shopping spree and some sightseeing in NYC, a beach vacation, a new kitty, participated in two fundraisers for cancer research, ping pong, archery, pet a penguin, had his picture hung up at his favorite coin shop, met the Wild Kratts, trips to Chicago, surprised with a signed Kidrobot, had a party to celebrate a year of fortitude, a Valentine's Day scavenger hunt and deliveries of balloons, flowers, dinners, gift cards, Legos, paper cranes, good luck charms, books, Kidrobots, cakes, cards, texts, emails, connections, etc...and every meaningful moment we have together. The generosity of some has been incredible. The continued inclusion of some has been so motivating, we look past the exclusions that sting. Oh, and he turned 11. And he woke up everyday. Living in between the existing.
My life begins when he awakens. During his naps I'm absolutely lost. I try to imagine the house, this life, without him and I just can't. I cannot. So we believe that one of these things we are doing will work. "A miracle is what seems impossible but happens anyway." This is a favorite quote from a frequently watched movie. Louie says the word 'miracle' is overused. "Like what I have. People have got through it before and so will I. It won't be a miracle". It's bewildering how I can feel so lucky and unlucky all at once.
My favorite moment in New York was the last night. The three of us went to dinner; talked and laughed and over-ordered. Louie had sorbet. Everything felt light. We walked back to the hotel arm in arm.
* Title from Neil Young song