Reach the Day - June 22-23, 2009 - Washington, DC

Reach the Day - June 22-23, 2009 - Washington, DC
As many of you know, Reach the Day is an event sponsored by CureSearch, the largest childhood cancer advocacy group in the country. CureSearch unites the world's largest childhood cancer research organization, the Children's Oncology Group, and the National Childhood Cancer Foundation through its mission to cure childhood cancer. Reach the Day is an annual event that brings the childhood cancer community together in one place on one day to raise our voices for all children with cancer and for those children who no longer have a voice. CureSearch arranges for personal meetings with Congress, giving you an opportunity to speak with one voice to raise federal funding for research. You can learn more about Reach the Day here.

My fellow cancer warriors, let me know if you are interesting in joining me there!

http://www.curesearch.org/

St. Jude Friend

Today is sad day for our St. Jude's family. Mary Kate lost her battle with Leukemia, and has earned her wings. She was a year older then Kevin, and stayed at both the RMH and Target House the same time we did. Please pray for her mother Regina and sister Alyson, who obviously are in an enormous amount of pain. Mary Kate's father also lost his battle with cancer a few years ago.

Eric

Rolling along

It's been almost 3 weeks since our last post. For me that's a good thing, as I often use this forum to get out some of my thoughts and concerns when things were rough. Kevin's been improving in all areas of his life. His writting has improved, as has his endurance and strength. His fine motor skills are probably the thing that looks (for now) to be the longest term of the side effects. He still has challenges with things that most kids his age take for granted, such as buttoning his pants, twisting off bottle caps, or even cutting his food. He's trying in all these areas, and if he has time he can usually complete the task by himself. His writting has improved dramatically, so for that we're pleased. He's been making friends at school, the neighorhood, and through both Rachel's and my friends children. His hair has gone from the Chia-Pet looking style, to the softer combable style that most kids have. It's still uneven in some areas, but looking at this point if you're a stranger looking at him, you'd never think he's been through 9 months of intense radiation and chemo. He's still a bit sensitive and reactionary, but he was like that somewhat before his ordeal. Our next trip to St. Jude is on April 7th. It sounds like it's just me and Kevin at his point, which I'm a bit torn about. It will be nice to have alone time with Kevin in Memphis, but as far as the MRI's themselves it's always been nice to have somebody there for support. We'll see what develops as the date gets closer. For the most part Kevin and I are both looking forward to our trip back to Mephis. I also wanted to say we enjoy being kept abreast of all of our St. Jude's friends through their blogs.

Eric

Monday at 99.5

Our local country station is getting ready for a Make A Wish Radioathon and asked Kevin if they could record his story. Kevin did a great job. But what was even more surprising is how interested he was in the DJ's job. Kevin loved playing with the mic and watching the waves go up and down on the monitors as he spoke. The DJ was a great sport about letting Kevin check out the equipment. I was told Kevin's story is suppose to air April 9th. I will let you all know when I get the MP3 copy.

Rachel

Fun Sunday

Kevin and I finally took Coach Izzo up on his offer to come to a Spartan Basketball game. We had a wonderfull time. I've never seen Kevin have so much fun at a Sporting event. We were 6 rows behind the Spartans Bench, where family members of the players primarily sit. We could specifically what Coach Izzo was saying when he was yelling at the refs or his players....was kinda funny. Kevin was into each and every play. In fact I was looking through the program, and he got mad at me and told me to pay attention to the game!!! My sister and her husband saw on us on TV when the camera panned to the Spartans bench. Afterward we had took full advantage of the passes to the lockeroom area. Kevin was a bit shy, but did get to see most of the players. He also got to talk to Coach Izzo again. I took a picture of Kevin with the Big Ten Championship trophy in the lockeroom. I kept asking him if he was ready to leave, and kept stating he was having too good of a time.

Other then that everything has been status quo. Kevin continues to improve in school, and has seen his energy return to near normal levels. His coordination is still a little off, but that was never his forte anyway. We had one ice day on Friday, and we took full advantage. I picked Scotty and Kevin up from school then we got ice cream, then went to the park, where Rachel and Jake met us. Everything is going well, and we go back to St. Jude on April 1st.

A Night of Hope

We were honored to represent St. Jude families at the Night of Hope at the Ren Cen Saturday evening. It was a beautiful event that raised alot of money for St. Jude. Everyone was incredibly kind and open to meeting Kevin and Kevin did well until about 9 pm. They had us speaking at 9:30 pm and I think by then Kevin was ready to head home. He is used to going to bed at 9. Eric did a good job telling about Kevin's inital diagnoises, I handled arriving at St. Jude and radiation. And Eric closed it out.

It was beautiful and what an honor to be surrounded by people who give so much for families like ours.

Rachel