Monday, March 23, 2009

The Last Day of Chemo

I can't put into words how I feel now. I thought I would add this video I have made to show the day. We played in the hospital gardens and then went into treatment. The music is by Jenny Phillips and the song is called Man of Miracles. Today is a miracle to me and I know that Jesus Christ is the glue that has held us together. I hope you enjoy this, we love you all so much. (Don't forget to scroll down and pause the music before playing this one)

Friday, March 13, 2009

Rain Gutter Regatta -Beginning and Ends

As you can see from these wonderful pictures, Joshua is a star. He built a boat for his scout troops raingutter regatta and took 3rd place. (The two boats that beat him were illegal) For those of you who do not know what this is, they take raingutters and fill them with water and the scouts build boats from a kit and race them. There are rules for building and then you blow your boat down the track without touching it. I was proud of Joshua for 2 reasons. 1- He did a good job building and racing his boat, and 2 - He did not say anything to the boys with illegal boats. I am sure they did not know about the rules and probably would have felt really bad if someone had said something. The point of the race is for the boys to build something and have fun and while it should be fair for everybody it just wasn't that important to Josh to win, he was happy with third and proud of his boat. That is what I want for him, not worried about others just happy. He did cry a little when he lost his last heat but more from the excitement than anything. One of the side affects of his cancer is that he can be emotional and can't control it. That is common for children with brain tumors and a lifelong side effect.

Well today is also a milestone. I am sitting at the hospital while they hydrate Josh for his last inpatient chemo. Can you believe it? He is having pizza and reading Harry Potter while he waits for them to start this last round. Rachel is napping in his bed and the other kids are down in the play room having fun. We will be here almost as often for outpatient appointments for the next 6 months while they do testing and followups but while there will always be lots to do, this phase is over. I should be happy, and I am but, I am also nervous. It is a dangerous waiting game we play now. The good news is that this game is Gordon's and mine to play and Josh doesn't have to be part of the worry. He can start to find a place where he can fit in with his new life. He will never be able to do things other kids his age do but I am sure he will find his way and do it much better than I could. There will still be lots of challenges but he is up to it! We are really starting to plan his end of treatment party. I think it will be sometime at the end of April. By then he will have his strength back from this last cycle and enjoy it. He wants to make it a Webkinz party and ask everyone to bring a Webkinz and then donate them all to the hospital for other kids. He has a goal to collect 250 webkinz so we are going to have to really get working. Luckily you can get little webkinz at the Walgreens inexpensively so I don't mind asking people to bring them. Anyway thank you for your prayers, we continue to need them and know they matter.