The vibe rumbling around room 761 on day “negative four” feels about as dreary as the day looks. In a course that has been filled with a few ups and too many downs we have managed to stay hopeful and move through each day with as much grace and gratitude possible. Today feels heavy and rough around the edges and my propensity for goodwill is wearing thin. In an effort to refill I turn to posting a journal as writing is curative for my prickly soul.
Will has had 5 days of conditioning chemo thus far and tomorrow receives another chemo agent that is so harsh it requires him to shower every 6 hours for 72 hours straight to rinse the toxic waste excreted by his skin or risk serious burns to his body. In the meantime, he came down with a fungal infection which has been very concerning to the team. Fortunately he seems to be responding to an anti-fungal med and based on a CT scan over the weekend the infection looks to be contained. The fear with anything whether bacterial or fungal is that, with zero immune system, infection can take over the body very quickly and once that happens it is challenging to come back from. He will have an MRI of his brain and pelvic region to confirm that is has not spread but until then we have to believe he is improving based on what we know thus far.
Meantime, Will is on lockdown. The rules have changed and his room, already sterile, now feels more cold and industrial as we must limit things like fuzzy blankets and other tokens of home that help take the edge off. He is only allowed 6 people in total who can see him for the duration of BMT (about 40 days). We managed to pack in as much puppy Stokely time and a few visits from friends before he officially got moved to the BMT service in hopes that those warm and comforting feels would carry him through this period of isolation. We have been in the hospital for four and a half months with another month plus looming in front of us. Where once we amused ourselves with board games and laps around the wing, we now just get through the day with mandatory self care’s and administration of medicines marking morning, noon and night until it is time to do again.
Will is an inmate of sorts and we are his wardens – making sure he complies and doesn’t cause a fuss. It is not a relationship I care for and I hope to put it behind me soon. It makes me pine for the days when he would declare he was in the mood for some pain in the ass food that was in a pain in the ass location across town but I’d jump at the opportunity to do something for him. Again, one of the foremost lessons we are now being forced to digest is perspective – however now the angles are all wrong. I know my strong and stubborn boy with the fighter’s spirit is still there, he’s just weighted down with the heaviness of what he has had to bear. As my sister said, he’s a tough cookie but he’s also just a boy and when I think about what most kids his age are up to it kind of breaks my heart.
We will get through this – we still hold on to the wonderful miracle that Will is eligible for transplant. We believe he can not only get through this but can firmly land on the other side where his life once again will be full of puppy kisses, debates about politics, griping about household chores, family dinners, ski trips with the brothers, hang out sessions with his friends and all other myriad of tasks both banal and big that make up our days.
If you grew up or spent any significant time in the midwest during the summer you know all about fireflies. Right now I feel like I’m chasing hope around like I would when trying to catch a firefly. It lights up in the dusk sky and you feel exhilaration as you run with your jar, it’s lid poked full of holes, to capture it. You know you can only contain your fireflies for a little while; it wouldn’t be fair to the fireflies to smother them with your need for their light. For me, although I’m catching a few here and there, I think the holes in my jar have been punched way too big by the enormity of our situation as my fireflies keep escaping before I’ve even had a chance to soak up their beautiful light.
Our next few days are going to be a grind but we have Friday (Day ZERO aka TRANSPLANT day) in our sights – please continue to pray that Will has stamina enough to get there with hope still in his heart. Please continue to pray that sweet Stathi stays healthy and is ready for his role to step in and be his little brother’s hero. Please pray that our big bear, Jack, knows he also playing a huge part in this journey, too…always ready to jump in and help out or give a hug when needed. And if you happen to catch a firefly can you remind me of how that they do exist and how lovely they are. That their impermanence is part of their beauty…..even when we can’t see their light they ARE there, just about to appear, rest assured.