10 Days is all we have left for proton beam treatment. Can I get a YAHOOOOOOO! It hasn't been nearly as hard on Keegan as I had thought it would. I figured a lot more burns a lot more uncomfortableness (is that even a word?). He has been such a champ and with only 10 treatment of proton beam remaining you maybe left wondering what the next step is.
For us the next step is going to be metronomic chemotherapy . I am not sure when this is going to start but he can be on it for years. It's low doses of chemo given everyday at home that can be adjusted depending on how it affects him. From what I hear it may take a little bit to 'regulate' his dosages as they are not supposed to make a huge impact on his blood counts and ANC.
We will still go to Riley monthly and have regular scans to see what is going on in that little body of his. I don't think we have any MRI's coming up anytime soon. Radiation is still working in the body for up to a month after it is "finished" so I think they will give him at least a month before we see what we re looking at.
As for his legs and the movement or lack thereof. I am working with him daily with stretching so he doesn't get too tight. Our radiation oncologist holds out hope that one day with intense rehab he will be able to walk again; Dr. Shih is not so optimistic about that. The cancer has done the damage, we have tried to undo that damage and if it can't be reversed we will deal with it. He can still have a great quality of life in a wheelchair, my thought is he still would be here with us! To be clear, we did nothing to make him paralyzed. When the tumor came back int he T9-T10 area it came back rapidly in the spinal cord and damaged nerves and blocked his CSF. The radiation DID NOT make him paralyzed, it was the tumors growth that took that ability from him.
We are also going to be spending more time up at Riley/Methodist in Indy. Dr. Shih wants Keegan to be in an inpatient rehab setting for awhile to regain some of the strength he has lost due to the surgery, tumor and radiation. This will be tough, I am already preparing myself for those grueling days when I know Keegan is tired but for the better good we just have to push through........He deserves to have the best life possible at this point and nothing will stand in our way. I am not sure how long we will be "inpatient" but with intense rehab twice a day I figure at least a month...I could be wrong.
Well, I guess that is all I have to update for now. I have made some great friends here at Jill's House. Everyone is so friendly and willing to help one another, it is really amazing to see how people come together. I have grown to love this place and after our last 10 days will miss talking with all the moms in the kitchen, hanging out in our room watching Elmo and watching the older girls run around the house from the library down to the living room and back......
PS-Thanks for all your words of love and support on my open letter post. I really appreciate everyone who spoke up and solidified my feelings and fighting spirit! For those of you that normally post under anonymous and aren't rude or snarky maybe I will open that back up one day but for now you can find me at Karing for Keegan on Facebook .
With all my Love,