Chemo, Round 2

Playing with blocks in our room

We started our second round of chemotherapy yesterday and he's doing great so far. Everyone on the floor has been really happy to see Lincoln so active, cheerful, silly and fun - a big contrast from our last stay at Hopkins.

This second round started with some really tough decisions. When Lincoln was diagnosed, we decided to place him on a trial - this was also the only option really presented to us. After I received the consent form for the second stage and read up on MIBG therapy, I was extremely uncomfortable proceeding with the study. I sought other opinions (my mother and I went to Memorial Sloan Kettering in NYC on Monday), did as much research as I could do, and still was really uncomfortable with the treatment. We have decided to take Lincoln off of the study.

While I was at Sloan I was filled with hope for Lincoln and what they are offering their patients. The hospital specializes in treating people with cancer and they have a team of doctors dedicated to treating neuroblastoma! I'm not sure what we'll decide for Lincoln but, I think it was in our best interest to understand some of the options to what Hopkins is offering.

For now, Lincoln will continue to receive care at Hopkins, the frontline chemotherapy is similar to what Sloan offers their patients. I wish there was an easier way for me to access unbiased information regarding treatment plans for children with neuroblastoma - any researchers out there find something reputable comparing Sloan to Hopkins (or COG) I'd love to see it =).

Thanks for all of you who are along on our journey, we are doing well, enjoying every single moment together and appreciating all that we have.

love,

megan