We were brought into room one today.
I remember room one. The last time Steve and I sat there we were there for a consultation as our child had just been diagnosed with neuroblastoma.
The room has changed along with Steve and me. All a bit more refreshed. I’m showered and in pants that zip, even washed my hair! The room has new furniture and a fresh coat of paint, and Steve is half the size he was last time we were here.
And it’s fitting we’re back in room one, as today is a bit of a graduation day for us in our cancer journey. Coming full circle! We are meeting our new team, the” long-term care team.” Yes, Jacob finally qualifies as a “survivor” at Sloan.
This team does not focus on the cancer/ the potential of relapse. No this team’s purpose is to oversee the side effects of his treatment.
All the sides.
I totally forgot about them.
The side effects of chemo, the side effects of radiation, and the side effects of immunotherapy. How we need to watch his spine as they don’t expect all the vertebras to grow due to radiation that continues to radiate in his body. Isn’t that interesting? Chemo makes damage (like taking away your hearing) and then disappears, Radiation will continue in his body for life. The side effects are largely still unknown. And immunotherapy…that list is long too.
There were so many sides. New things to watch. His heart from radiation may age faster, he may be infertile, oh the list.
And all of a sudden I was back in room one hearing the “and thens.” I forgot about all the things we signed up for. All of the therapies we said yes to. All of the future decisions we made on Jacob’s behalf. And I walked out sick.
Truly. Next day fever, etc. My body collapsed. Back to sweatpants.
The sides are real. We can’t run from cancer. Turns out there is no “after.” Cancer will be part of our story for ever as we will always have a “side” of it.
Abby, I’m heartbroken to heal details of cancers forever impact. No child or family deserves this harsh reality. As his mother it is so hard you can’t make it all better just move forward broken but beautiful & strong. Sending love and hugs. Candice Nadler
Leave a comment