At 3 and a half months old, Will was diagnosed with a brain tumor, AT/RT.
Within two days of Will vomiting, not really eating much, and being sluggish, our NP at our pediatrician’s office had us going for blood work and then into the ED once she got the results. We knew something was really wrong, but I don’t think Clay or I could have ever expected to hear the words we did.
There’s a Mass.
I had to beg the medical provider in the ED taking care of us to tell me that. And then our world as we knew it just stopped. What had we done to to deserve this? What had Will done? I kept saying over and over that I didn’t take my boys for granted. I knew that I was lucky to have them. I knew how special they were. Why was this happening?
I thought the commercials ABout St. Jude weren’t real. I didn’t know that world really existed.
When Will was first diagnosed, I remember being in a room in the PICU facing the cemetery and just thinking that if Will was going to die, I wanted it to happen sooner rather than later. I could’t fathom him fighting this disease only for him to succomb to it in the end. How selfish that way of thinking was.
Within days of being diagnosed, Will had brain surgery to remove as much of the tumor as could be taken out safely. The Will we got back couldn’t do much of anything but cry and stare into space. We had a shell of the baby we had had just days prior. We worried he wouldn’t regain any of the capabilities he had before. Will had stem cells taken out to be used after three of the rounds of chemo. He had a shunt placed to drain all of the excess fluid collecting in his brain. He had a broviak put in to help with blood draws and the delivery of chemo. He had NG tubes and eventually a G-tube placed for nutrition. And he started an intense protocol that included 6 rounds of high dose chemo, 3 with stem cell recovery, and 30 rounds of proton beam radiation. Will was treated locally at Golisano Children’s Hospital as well as in Boston at Massachusetts General and Dana Farber. Throughout treatment and after, he had MRI after MRI to see how the tumor has responded. We held our breath each MRI until we got first preliminary results and then confirmation that the tumor was responding, things were looking good.
Will was granted a brief reprieve before we could tell he was off.
Something was wrong. The cancer was back. An MRI confirmed what we already knew in our hearts. We made the decision to participate in a trial in Boston. We had to make decisions no parent should ever have to make.
The 23 months we got with Will are 23 months we will forever cherish. We saw what true bravery, resilience, determination, and pure innocence look like.
We watched our child suffer. We watched our child fight to survive. We watched our child work harder than “normal” children his age just to meet basic milestones. And then we watched our child die.
We are forever changed.
And it is our mission to make sure that other local families with a child facing a life threatening illness feel the love, support, compassion, generosity, and help that we received. Will didn’t make it to his second birthday, but we live for him every day of our lives. He is our inspiration and making others’ lives better is the goal of our foundation. We will do good in his name, and we will make a difference one family at a time. We can all be a part of the good in this world and right here in our community.