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April 6th, 2005

By Margot | April 6, 2005

We have now been home from the hospital for almost three weeks. Wohoo! (knock on wood of course). Spring has finally arrived in San Diego and we’ve been taking bike rides and little hikes and flying kites. Sammy has been seeing his friends on his off days from the clinic. It’s been wonderful to let a little bit of normalcy creep back into our lives. Sam’s counts are actually down this week instead of last week so we are extending the GCSF shots for another five days. Yuck. Sammy has decided if he holds his breath it hurts less.
We had our audiology exam yesterday and Sam has lost hearing in the high and mid frequencies and needs to be fitted for hearing aids. I knew that was the answer that was coming but it hurt to hear it anyway. Neil took him to the appointment because I had a doctor’s appointment at the same time. Neil said the audiologist nearly cried when she saw that his baseline test from three weeks ago was perfect. I’m not sure if this means that they’ll adjust the level of Cisplatin on round five or not. We still need to talk to the oncologist about it. It’s a fine balance because we need to kill the tumor. There are a couple of studies out on drugs that prevent hearing loss from Cisplatin but the jury is still out on whether or not they prevent Cisplatin from doing it’s job on the tumor.
We start round four of chemo next Monday and that will be Vincristin and Doxirubicin. We thought about going on a mini-vacation this week but since his counts are down we’ll stay put and go when his counts go up after round four.
We signed Sammy up for the Celebration of Champions in May (a fund raiser for Children’s Hospital) which people tell us is an amazing event. Sammy gets to carry a torch for an eighth of a mile and pass it off to another child. There will be all sorts of sports stars and local celebrities there and Sam gets to take home a medal (and boy does he deserve a medal). I’ll post more about the event as it gets closer. Thanks to sponsors: Iron Mountain (Donny), Relocation Coordinates, and BAE Systems. Also, Sandra Munson is running a half-marathon to raise money for Sam. Thanks Sandra! And thanks to everyone who came to the MyGym event also.
Thanks to everyone for all the help and support. I know I owe many thank you notes and phone calls and don’t have much of an excuse since we’ve been home for two and half weeks but I’m thinking of it if that counts.
Margot

Topics: Progress Reports | Comments Off on April 6th, 2005

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