Happy Easter

Happy Easter and Passover to all! Easter should be an interesting one in our home as Catherine will be on Day 5 of her steroid pulse. Hopefully her cousins will be able to keep her mind off her pain and rage. I always know the steroids have kicked in when Catherine declares that she hates Alex. They really love each other and she never says it any other time. Being a 2 1/2 year old boy, he really knows how to push his big sister's buttons. I hope it doesn't give him a complex as he gets older (although as he gets older we will explain more to him so he doesn't take it so personally). Once again we had to do our appointment on a Wednesday as the office is closed for Good Friday so I got to really meet Dr. Farzana (Pankashar) as she was our doc that day. Such a nice woman. In a way it was good that she wasn't as familiar with specifics of Catherine's case in terms of dates because my question forced her to look into Catherine's file and I was able to see some lab work from last year that I had never seen (actually, Dr. Darryl had handed me the cytogenetic lab work that stated she was in remission, but at that time none of it made sense - a year in and way too much research later, I get it). Basically, I have always hounded the doctors on why this particular protocol (for those of you interested, you can Google AALL0331 to see what her protocol is). I wanted to know her take and she just immediately was like, "I would never put her on anything else" - so convincingly. So that's that, no more questions on the protocol.

I always hate to bring other patients up, but yesterday I learned that one of the teenagers in the office relapsed during the Maintenance phase of his treatment for Non-Hodgkins Lymphoma which means it is not responding to the chemo. He will be getting a Bone Marrow Transplant in Boston on Friday the 13th. I was just so stunned to hear this as it is not the norm and he is the 3rd kid I now know that this has happened to. He is just such a great kid - we first met him over the summer (hell, I lived there over the summer so I met everyone then!) I originally thought he was one of the many teenage volunteers who came to the office to play with the young kids and give the parents a break. He played Candyland with Catherine then and even yesterday as Catherine was giving me a hard time about her Decadron (steroid) dose, he and his father were trying to help me out. So please pray for him and his family. I also don't like to post the blogs of other families, but this one is amazing - I have been following this little girl from South America for a few months. She was diagnosed with Infant ALL about 2 years ago, relapsed and had a bone marrow transplant at Duke, relapsed again about 6 weeks ago and is preparing for her 2nd bone marrow transplant. Dave and my friends always ask me why I follow the stories of families like that and I always tell them that 1) it reminds me to be thankful for everything and truly take one day at a time, and 2) I draw strength from families who seem to be able to handle such adversity with the most amazing grace. Anyway, her site is http://www.caringbridge.org/southamerica/alexia/

Thanks again for all your support and for letting me share these stories with you.