We have officially completed Radiation treatment #13, the last of Caleb’s full brain and spine radiation!!! This is just a tiny step forward, and we aren’t finished with all his radiation treatments, but we are done with the most severe part. Full brain/spine radiation is considered pretty aggressive treatment and we are so happy Caleb made it through with minimal short term side effects. Long term side effects are yet to be determined but we remain positive.
Caleb was in good spirits before his treatment as usual. Since we get dressed when it’s dark and so early in the morning I didn’t notice that his socks didn’t match. So we got to the waiting room today and I saw that not only did his socks not match, one had a hole in the heel of one of them. Mom of the year right here! HA HA!!!
We started the day with lab work. Caleb is so brave and knows that it isn’t going to hurt now. He even helps the nurse scan the bar code on his bracelet and on the vials of blood. Then we went to his radiation treatment where the nurse had a brand new tub of play doh ready and waiting for him!
Caleb’s choice of snack after his treatment today was Cheetos and chocolate milk. The thought of the two together doesn’t seem appetizing to me, but he was a happy boy with his Cheeto dust fingers and chocolate milk mustache!
We are really starting to see a significant amount of his hair falling out now. He was shedding all day. There was hair on his pillow, on his clothes, on his blankets, on our clothes, everywhere! He seems more annoyed by it than upset about it because he kept getting hair in his mouth! We are a little sad about it, but as long as he stays happy his hair doesn’t matter much. His back and scalp are also very red from treatment. His spine will not get any more red because he will not be receiving any more radiation over his spine. His scalp will continue to be sensitive though, as his next stage of radiation treatments will be focused just at the tumor bed site in his brain.
We met with Caleb’s Neuro Oncologist today for our last appointment of the afternoon and he thinks Caleb is doing great! We talked a little about his Chemo schedule and we think we can maneuver it so he will not be inpatient on Christmas Day (his original schedule had us being admitted on Christmas Eve). So now if everything stays on course he will do his first inpatient Chemo starting the day after Christmas. He will start Chemo before this, but not all Chemo requires an inpatient stay.
We are all a bit worn out tonight. The long week has taken it’s toll on us all and as I type this James and I are each laying in the boy’s beds with them watching Mickey Mouse on TV. They have a TV in their room here which they have never had before. Tyler’s school is having a Fall Festival tomorrow afternoon so we need to get rested up for a fun weekend ahead.
What can I say ,you guys are so fantastic and strong I know it can’t be easy seeing your child go through this . But with the love God and all of your supporters you will get through this.Stay strong and positive for the love of your family!🙏🙏🙏❤️❤️❤️
With all my love and support!!
So glad you can now see a chunk of the treatment in the rearview mirror of this trip. He’s doing so well! Enjoy the Fall Festival!