Message from Andrea - June 23, 2009

It's good to be home
Posted 11 hours ago
We were able to go home Saturday and it feels "grand," as Julian likes to say. Just in time for Father's Day when we went on a bike ride around the neighborhood (Julian still fits in a bike trailer and enjoyed the nice breeze).
He's on IV antibiotics for another 4 days and then it will be down to only nine daily medicines (LOL). We hope to keep those nasty bugs away for a long time! He'll have another push of chemo this week and then 3 weeks until the next cycle.
His MRI came back clear and the P.A. remarked it's hard to tell there ever was a large tumor in his brain; he was pretty amazed by the difference between this MRI and one six months ago. They could see that his ventricles were too small, though, meaning a bit too much fluid was leaving his brain, so they had to recalibrate the setting on his shunt by simply using what amounts to a magnet placed on the outside of his head. After a few painless clicks, he was recalibrated.
Today, Julian wanted to go to Adventure City, a place he used to love. It's perfect for kids his age. For him, the outing was quite an undertaking and he lasted all of 35 minutes. We rode a kiddie train around the park, watched a 5-minute puppet show and then he said he was tired and wanted to go home. It was kind of sad to see how little he was able to do and how he shied away from even the gentle rides he used to enjoy in the past. I keep wondering if he'll ever be able to do the things kids his age do when this is all over or if it will ever be over.
Feeling a little melancholy, I admit, but during the last stay at CHOC I was updated on Cody, a boy with the same type of cancer as Julian. He had been in remission for about 2 years, was just about to go from 3-month to 6-month intervals for his MRIs -- which had been clear the entire time -- when small, rice-sized tumors appeared on his spine in a short amount of time. We shared a room with Cody in March when he first relapsed and he has been fighting for his life ever since. Survival rates for a relapse go down to 25%. I've learned of two more kids at CHOC (totalling 3 out of 7) who have relapsed with this disease. I need to find out if they (the MDs) can point to some reason this is happening. So....we accept all the victories -- and believe me, we are thankful for so much and just to be home is wonderful -- but are more aware of the realities, too. For the moment, I'm glad my little boy is sleeping soundly tonight. God bless.