We leave tomorrow for Philly, but we received a phone call today that has thrown our plans off a bit. Our oncologist at Cooks called around noon today and said that she had reached out to St. Jude Children’s Research Hospital in Memphis and wanted to pass along some information. She said that she and the doctors there have some concerns about intra-arterial chemotherapy (IAC), the treatment we planned to get in just a few days, and that they would take his case there. They said that IAC is not protocol for his group of tumor yet, and they’ve seen some cases where there have been complications that could have been avoided by using systemic chemotherapy.
I started crying on the phone with her. I told her we were leaving the very next day, and that our retina specialist had told us this was the way to go. We assumed that meant our whole team was on board with Philly, but apparently that wasn’t the case. She encouraged us to still go meet with the Philadelphia doctor because she IS the guru of the IAC treatment, but that she wanted me to have all of the facts and felt confident that systemic chemo would work well. I added Scott to the call so we could both listen, take notes, and ask questions. The conversation ended with her saying she would connect us with the doctors at St. Jude to see if we could make it up there next week to see them before we committed to treatment in Philadelphia.
The St. Jude retinoblastoma specialist called us that day and spoke with Scott for 45 minutes about her concerns with IAC and her confidence in systemic chemo. She was very informative and took her time answering our questions. We were convinced by the end of the call that we would definitely not move forward with treatment in Philadelphia this trip. She told us we could call Monday after our meeting with the Philly doctors and discuss making the trip to Memphis for a consultation and exam under anesthesia.
It’s been a LONG and emotional day, but we’re ready to get the process going tomorrow.