He was having excruciating pain in the bones of his lower back, hips, and knees. At the time every nightmarish possibility ran through my head of what could be causing it. The next day I would find out that it was "neuropathy", a common side effect of Vincristine, one of the chemo drugs he was taking.
"Why is this happening?" he cried, as we lay there next to each other in the dark. He couldn't stay still. I wasn't sure how to answer him.
"It's a side effect of the chemo medicine Sully. This is why they say "Fight Cancer", because it's a real fight dude. You have to fight and fight, no one said it would be easy."
It seemed to make sense to him, but nothing was consoling him, it was horrible, and instinctively I laid my full bodyweight across his legs. I thought the pressure might help, and it did.
It was a rough night, neither one of us slept more than 20 minutes, and in the morning the pain was still raging. We left the house at 7:00am for his scheduled chemotherapy appointment at the hospital. When we arrived the nurses were alarmed at how much pain he was in. He was shaking with the kind of pain I could only imagine if someone was pushing a nail into your skin. It was so upsetting to watch. The pain was so bad they re-admitted him to the hospital. Eventually they gave him Oxytocin, and when that didn't work they had to give him Morphine later that afternoon. I was shocked that they were giving him a drug that they routinely give wounded soldiers on the battlefield.
Over the next day or so they started him on a medicine called Gabapentin, to resolve the neoropathy. It worked.
That was a couple weeks ago.
So much has happened since that fateful day Sunday May 17th when I got the news that my boy had B-Cell Lymphoblastic Leukemia.
Sully spent nearly a a month in the hospital and I've navigated an array of emotional ups and downs, a cycle of good news and bad news. There have been lots of solemn meetings with his doctors, where tons of complex biology and treatments were discussed. Further studies showed that he has a "Philadelphia-like" variant of cancer with a "Jack" signature, something we were hoping not to hear.
Each meeting has concluded with the doctors leaving, and me left alone in the room; sometimes sobbing, but always sitting, staring, remembering, wondering. They are scenes from a Lifetime movie. I love deeply, and as a result the emotions are proportionate.
Our friends and family have been wonderful. The amount of love and support for him and for us has been nothing short of amazing. Two of the most touching moments were the police escort homecoming that our community arranged for him, and the "head-shave party" where 25 of his friends and their dads joined him to lessen the emotional impact of losing his hair.
Thank you from the bottom of my heart to Lauren & Anthony Picone, Brian & Chrissy Silk, and all of our friends and family who have reached out, sent cards/texts/emails, donated to the go-fund-me, brought dinners, and done so many other thoughtful things. Most importantly we've appreciated the love and concern. There is no better feeling than knowing we have an army of support, and we are not going through this alone. Sully is fortunate. You have been our foundation. Thank You.
Full treatment will be roughly 3 years. It will be a long journey, but we have indefatigable resolve in this family. We are relentless, and we refuse to let anything get in the way of our happiness or living life. This cancer battle is just another inconvenience, and my boy will beat it. With the exception of the meds, chemo treatments, and lost hair we refuse to let the disease cast a shadow of limitations on our life.
We've had enough lessons in our family already to remind us how short life is, and how important it is to live each day like a story getting the most out of even the most mundane things. I've always taught my kids to live life with an undying love and passion. To appreciate everyday as a gift. This resonates now more than ever.
My ex-wife and I spend the days carting our boy back and forth to chemotherapy and doctor appointments while trying to keep up with our career and business obligations. There are so many weekly blood tests, phone calls, meetings and fights with the insurance companies. We are optimistic Sully will be cured and we continue to pour ourselves into the latest research and treatments. Right now he is on the best path and there are case studies of patients with his condition who have been cured.
I have 4 of the best doctors in the country working collaboratively on Sully's Phildaelphia-like B-Cell Lymphoblastic Luekemia with Jack signature cancer. They are the doctors who have discovered and/or participated in all of the original and ongoing research and studies on this type of cancer. I am grateful for their expertise and interest in his case.
Medical bills have been rolling in, 7k for the ER intake and first day, 15k for the cutting edge Ruxolitinib medicine just approved by the FDA. The fundraising has been a godsend.
My days are mostly so busy that I don't have time to reflect, but boy when things slow down and mostly at night; it hits like a ton of bricks. I look and see a boy that is hard to recognize from a month ago, and I put my faith in God and try and re-focus on the moment before me not the past or future.
I take my own advice and remind myself that Sully is here today, he's with us and that is all that matters. I can still laugh with him, hold him, touch him, hug him, and be frustrated by him. It's a great day. Sometimes that is the only thing we need to focus on.
My bald-headed baby boy rides shotgun with me back and forth to his chemotherapy appointments. We drop the sunroof and windows and play loud music yelling over it to hear each other. The wind blows on us. We laugh and sometimes we speed. I hold his hand and he talks to me about aliens, slime, and politics.
He is happy. It gets at my heart.
I wonder how the FUCK this happened.
Thinking of all of you.. sending lots of love..xoxo you got this Sully
ReplyDelete