Today’s agenda included Physical Therapy, Radiation Treatment #20, and a Genetic Testing Consult.
We started our morning in Physical Therapy (and Caleb wanted to pull his own wagon into St. Jude today. I guess he was feeling strong!) This is the second time he has been evaluated by the Physical Therapist. He can’t believe how strong and energetic Caleb is. He had Caleb run up stairs, kick the soccer ball, stand on one leg, walk a line, and throw tennis balls at a target. No problems with this kid! It still blows my mind that he has had brain surgery and we have not seen any neurological effects. We just sat back and watched him and smiled.
Next up was his Radiation Treatment. This made #20! James worked and Caleb chilled in his wagon until it was time for him to go to sleep.
For our last appointment of the day we met with the Genetic Testing department. We have been nervous about getting genetic testing started, because AT/RT is caused by a mutated gene. This gene can either be something that mutated just in Caleb’s DNA, or something that was passed down from James or I. They gave us a couple options if we want to pursue genetic testing. We can either test only the 1 gene that they believe is related to AT/RT, or we can enter a research study that tests 150 genes that they believe are key in revealing if Caleb is at risk for other types of cancers including the gene that they believe is related to AT/RT. We chose the second and more thorough option. The name of this study is Genomes for Kids. It will take several months to get results back, but we should have the results of the test back by some time in January.
The genetic testing brings mixed feelings. On one hand we are grateful that St. Jude offers so many studies and is giving us the opportunity to learn more about Caleb and his diagnosis. On the other hand, learning that one of us passed down this gene to him would not be easy news to hear. She said there is about a 1 in 3 chance that the mutation is hereditary. Either way, James and I decided that knowledge is power, and anything we can learn about why Caleb got cancer, if he’s at risk for other type’s of cancer, if Tyler is at risk, etc. far outweighs not knowing and just wondering. Depending on the results we get in January James and I and possibly Tyler may undergo further testing. But for right now we will seek more information about Caleb and go from there.
So, on a more light hearted note… I finally explored Kroger for the first time. I am warming up to it. I miss my Publix…but… Kroger does have a Starbucks!!!
We are extremely excited for Halloween tomorrow. There are activities planned all day so the boys are going to have an amazing time! I gave them a little (non candy) treat before bed tonight that included light up squishy pumpkins, vampire teeth, and spider rings. We definitely got a good laugh out of the vampire teeth. Can’t wait for tomorrow!!
Caleb is an amazing young man and we are sending all kinds of good wishes and loving prayers for your entire family. Because he has such a supportive family he draws strength from all of you. I know this experience is surreal, but know that there is an army of folks who are praying and we know that God’s loving arms are surrounding you. Waite and I are long time friends of Ebbie Sue and the Pou family. We have gotten to know Bob and th8nk he is a wonderful person. Caleb is a champ and I know everyone there loves him. Love,Susan and Waite Willis