The Good Days: Life Between Radiation and Immunotherapy

23 Sep

At this point in treatment, Jackson had been through biopsy surgery, 6 rounds of chemo, surgery in New York City, high dose chemo followed by a stem cell transplant and 12 rounds of radiation. Sounds like a lot doesn’t it?

Yeah, we weren’t done.

A list of that length usually exhausts most treatment plans, but if you know a thing or two about Neuroblastoma, just that treatment alone has been proven ineffective for long-term survival. Kids were relapsing within a year or two. And once you relapse, there still isn’t a cure.

There wasn’t in 2009 and there isn’t in 2015.

We were about to embark on a new therapy with very positive preliminary results called Immunotherapy. Everett and I had read a lot about it, and we debated going back to Sloan Kettering to have it done there. Ultimately, we decided to stay home and have it done at CHKD.

But thankfully, it wasn’t time to start yet. For several weeks following radiation, we got a break. Check ups in the clinic? Yes. But no admissions, sedations or long stays.

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During that time, we did nothing but have fun. It didn’t take long for the side effects of the radiation to go away. Jackson had some tummy upset and irritability but he was a quick healer. (Though I do think it was the radiation and surgery that causes his tummy issues now)

We went on playdates, hung out around the house and focused on putting some major weight on Jackson. In this picture, we were at the pumpkin patch by our house. Jackson no longer looked really sick, and you can see his coloring had recovered from the chemo. His hair was growing back in – eyelashes, eyebrows and even the little hairs on his legs started to come in!

The mischief fully returned to his eyes. It was so comforting to see him recovering. I remember thinking at the time: Maybe we can just live quietly under the radar, just enjoy our lives, and they’ll forget about us and finishing treatment. And the cancer won’t come back, and we can live happily ever after.

Yeah. Nope. We got the call to get him scanned, pre-medicated and ready for the next phase. They still remembered us.

Little did we know Immunotherapy was going to be Jackson’s toughest battle. I’m actually glad we didn’t know. I may have tried to keep us hidden in the pumpkin patch.

Looking back now, I’m even more grateful for those gorgeous early Fall days before the storm set in.

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