Sorry for the delay in updates. Other than a few things it’s been a pretty typical week and that is a very good thing!
As of today Josh has completed 8 radiation treatments and he is taking them like a champ. They have just become part of his afternoon routine now and so far all seems good. The techs for radiation tell me he almost falls asleep each time. We met with the radiation oncologist today briefly and he thinks things are going well so far.
And other than the first night chemo also appears to be going well. He takes a Benadryl about an hour before the Temozolomide and then goes to sleep soon after. This strategy along with no snacking after 7 pm seems to be working. The only side effects apart from some nausea so far seems to be some itchy patches along the shoulder blades and dry lips. Hopefully it continues that way.
He had his first blood work done since starting this phase of treatment on Tuesday and in the words of one of the docs at Mary Free Bed it came back “perfect.” So no need for a transfusion this week. They will keep an appointment on standby each Wednesday morning just in case.
His therapies are also going well, everyone always comments on what a hard worker he is. He can stand for a short bit on his own, though he needs to be spotted by someone. And yesterday he had to get scolded by the tech and myself because he stood up on his own with neither of us right next to him. On one hand that’s amazing on the other it’s dangerous. It was rough to be tough on him, because that was impressive, but we also don’t want to risk an injury from a fall.
He is walking further each time they work with him and he’s getting better with the cane. He’s also making lots of improvements getting himself dressed and cleaned up with minimal help.
His memory and language are still struggles but he’s making some strides forward, albeit slowly. He still has issues with names for objects and his short term memory gets fuzzy. And his right arm is still weak, though the muscle relaxers seem to be helping them work with it easier and he can sometimes grip objects with help.
I’ve been cleared for transporting him which makes appointments so much easier to get to and allows for a few more minutes out if we want to. They are presently finishing up work on a day pass and we’re hoping we can have a fun trip out somewhere on Saturday when Jon, Kayla and Elijah are visiting, though we may need two cars since we cannot fit all in one anymore. That’s the hard part of having 2 compact cars. Definitely something we’ll have to fix in the long term but having a car payment again won’t be easy.
The plan presently is for him to remain at Mary Free Bed until his radiation/chemo phase is done. That is as long as he is able to keep up with his therapy schedule or a slightly modified one if necessary. This will take us to the end of June/first of July, which would be a total of 3 months at MFB and 3 1/2 months since diagnosis. But it is what is best for him, so hopefully it all continues to go well. I still can’t believe it’s been over 2 months since his surgery, though some days the stay at Devos seems a lifetime ago.