Wow, almost a month since an update! Basically Eli has been enjoying school and taking oral chemo (Temodar) this whole time. This round of Temodar ended on November 1st, and as we expected, his counts have gone downhill. Last week, his Hemoglobin hit 6.2, so he had to have a red blood transfusion at Blank in Des Moines. We hadn’t been there for quite a while, so it was nice to see some familiar faces! We contacted Dr. Kramer to see what she wanted to do next and she said that she hopes his counts will come back up and we can start another round in 2 weeks. I don’t think we share her optimism for the rising of Eli’s counts, but we’ll see. In either case, we were able to schedule his next workup in NYC, so his next set of scans will be November 30th and December 1st. We haven’t been in NYC since the end of August, so that is quite a stretch for us to be home for! We are hoping that Corporate Angels will be able to help us get there and back. Please pray that Eli’s counts rebound and that he doesn’t get sick while his counts and his immunity are low.
We did make one more trip out to Colorado with some of our extended family last month, which was awesome. Instead of going to the YMCA of the Rockies in Estes Park, we went to the YMCA of the Rockies near Winter Park. It was very quiet since it was the off season and we saw lots of great wildlife and enjoyed the great activities there.
There have been so many kids losing their lives because of Neuroblastoma lately. We also lost a good friend to Ewing Sarcoma last month. Charles was one of Eli’s first roommates at MSKCC and I instantly hit it off with him several years ago because he and I were very close in age. We would stay up until 3-4am playing Guitar Hero on the Wii and just talking. He was a great guy and always wanted to see how Eli was doing whenever we would run into each other in the halls of Memorial Sloan Kettering. Please pray for his family as well as the families of our Neuroblastoma warrior friends.
Love you guys and are praying that the counts come up and no sickness creeps in!
John, Cynde, Josh and Cheyne
Praying that the counts come up. There’s no place like home, home. All to the glory of God! luv’nChrist, ken
Miss you guys!
Glad to hear you are spending some “normal” time at home these days. Not sure when we are heading back to NY, but scans will probably be about the same time (was originally told week after Thanksgiving but no dates yet).
Steph and the girls