We are on our way back from Philly where we went to Chop (Children’s hospital of Philadelphia) for a second opinion on Jacob’s scans and future treatment. The good news is everyone is in agreement (Sloan and Chop where the leading experts in Neuroblastoma are), but the bad news is the fight is very much still on. There is still cancer and cancer can grow, morph, and spread. So we need to continue with the HITTS protocol, which is chemo and immunotherapy. Our fear of secondary cancer from chemo is less of a concern according to the experts than the possibility of his small bit of cancer left growing.
Not thrilled, but of course, we will do whatever it takes.
Tomorrow we go back to the hospital for blood etc. and Monday we start living all of our days there again. On Monday we begin counting again. I was hoping the New Years’ countdown would be the last, but Monday is day 1.
The fight is FAR from over as sadly most of our day was preparing and coming up with a game plan for a possible relapse. 50% of kids with high-risk neuroblastoma relapse. It’s crazy that he isn’t even in remission yet, but here we are having these conversations. We need to store some weapons for later.
So treatment plan:
- Continue HITTS protocol until he is in remission
- Once in remission do radiation and immunotherapy
- Post immunotherapy and radiation join vaccination trial
- THEN PRAY FOR NO RELAPSE
If you ever need to go back there we have a three bedroom apt on 19th and JFK that you can use!!!
Really?! Good to know!! Thank you for that
We’re all praying for Jacob and hoping 2020 brings him into remission!!!!! Sending lots of love. Tell Jacob I love his badass Adidas Superstars!!! ❤️❤️❤️❤️
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