Nico’s numbers are up, so he is going to surgery tomorrow to have a port placed and starting the new round of chemotherapy. Jeff and I are apprehensive and scared, but we are also eager to get started so that we can get through it and be done.
After an incredible amount of research and quite a few emails to our oncologist, we decided to enter Nico into the study, but he ended up being selected for the standard single medication protocol (as opposed to the triple medication protocol). We were actually disappointed, but like most everything else it is out of our hands and we just have to hope this is the lucky draw in spite of what we wanted. One positive that came out of this was that I think both Jeff and I now really trust our oncologist. Rather than being threatened by our constant questioning, he welcomes it, quickly responds to us and actually complimented us on our involvement. It makes the process a lot easier for us.
Another positive has come from a list serv where both Jeff and I spend a lot of time. Through it, we met another couple that has a child just six months older than Nico and was diagnosed just 3 weeks before him. Both of our boys have favorable cytogenetics and only missed being standard risk by one criterion. So even though this other couple lives in another state, we feel like we are going through this together. We email daily and I cannot tell you how many times they have allayed my anxieties. This whole process is frightening, but it helps to have someone else that completely understands your concerns and fears.
PS - If you got a Team Nico shirt, please wear it tomorrow to show your support and text me a picture! :)
After an incredible amount of research and quite a few emails to our oncologist, we decided to enter Nico into the study, but he ended up being selected for the standard single medication protocol (as opposed to the triple medication protocol). We were actually disappointed, but like most everything else it is out of our hands and we just have to hope this is the lucky draw in spite of what we wanted. One positive that came out of this was that I think both Jeff and I now really trust our oncologist. Rather than being threatened by our constant questioning, he welcomes it, quickly responds to us and actually complimented us on our involvement. It makes the process a lot easier for us.
Another positive has come from a list serv where both Jeff and I spend a lot of time. Through it, we met another couple that has a child just six months older than Nico and was diagnosed just 3 weeks before him. Both of our boys have favorable cytogenetics and only missed being standard risk by one criterion. So even though this other couple lives in another state, we feel like we are going through this together. We email daily and I cannot tell you how many times they have allayed my anxieties. This whole process is frightening, but it helps to have someone else that completely understands your concerns and fears.
PS - If you got a Team Nico shirt, please wear it tomorrow to show your support and text me a picture! :)
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