Hi everyone,
I just want to send out a quick update as Jon-David’s surgery was supposed to be on Wednesday, and so many people have reached out with prayers and offers to help.
We have had a pretty significant last minute plot twist. As previously mentioned, we have been working on a second opinion with Roswell in Buffalo, and they have been meeting with the tumor board there to discuss Jon-David’s case and an alternate approach. After meeting, we received the call on Friday that they believe the best course of action is to be a little more aggressive and do a full pleurectomy as well as intrapleural chemotherapy. This basically means that they will be completely removing the lining of his lungs (where the tumors all seem to be located). Then, while they are in there, they are going to flush the chest cavity with a dose of chemotherapy (that is heated to 107 degrees) for an hour. The idea is that the “hot chemo” will kill the rest of the microscopic cells in his chest that are left over after removing the pleura. In theory, this will stop the spread of the cancer.
While this is still a fairly new treatment option, it has shown positive survival rates, with an Increase of about 20% which is HUGE when your chance of survival is less than favorable.
So, we cancelled Wednesdays surgery, which would have only been addressing two of the three currently identified spots, to plan a much bigger surgery which will (hopefully) have much larger lasting impacts. If nothing else, this approach feels proactive instead of reactive.
We are now feeling hopeful for the first time in months, while preparing for another Summer of recovery and healing. Here’s to plan ‘B’ and a new approach at kicking this cancer to the curb.
*Also, thank you to everyone who reached out thinking about us this weekend. Telling the kids was hard. No one should be asked if daddy is going to die from the cancer by their eight year old. But we made it and the kids are okay. If you’re looking for ways to help once surgery hits- offers for play dates for ANY of the kids to distract them and keep them having fun and being busy is thoroughly welcome!
I’ll update in the next few weeks as there is a new surgery date and a new official plan of attack.
- Nikki
