We left for hospital at 9:30 am this morning, after OT at 7 and PT at 8. Once again waiting, sitting in the MRI room; yellow walls, contemporary pale olive colored chairs. I wonder what studies have been done to determine the best color for waiting rooms, but truly I wonder what the results will show. We are now in our third week of treatment, halfway there. The last MRI (when we first arrived, before treatment) did show more leasions and growth but Dr. Y did not seem concerned saying this did not affect protocol or outcome, although in my head I felt doubtful. So here I sit again… LONG WAIT…I feel like I am getting better at this though. They said hour and a half so I set the timer on my phone for an hour, went for a walk, stopped at Harvard Garden pub right next to hospital for something to eat (Fish and Chips) and a “Nor’Easterner” Cocktail (pomegranate vodka, Ginger beer (not ginger ale) and cranberry). Chatted on the phone to friend back home so I did not feel so alone eating by myself, before I knew it my alarm buzzed. I paid the bill and tracked the block back to hospital. It felt good to get outside in the crisp air, I can still feel the red on my checks from the wind as I now settle in the waiting room.
I met another mother today in the waiting room at Proton Treatment today. Her daughter is 3 she had a “type” of medulloblastoma but with something else, behind her ear. Did the surgery, they said they got it all but still had to do 6 months Chemo and now radiation to make sure it is all gone. Listening to her talk I felt so bad knowing how bad radiation in on such a young developing brain, but what choice? I told her about Aiden, being from Canada, the surgery, how he developed Prosteria Fossa Sydrome after the surgery (no taking, walking, etc.). She told me there are two other kids here right now with Medulloblastoma; one is 2 and the other a 13 both boys. I know who she is talking about from the waiting room due to the distinguishable scar. I recall them because I have seen they talking, running, walking, snacking, as Aiden gets pushed into the room on a stretcher everyday. I ask myself WHY? Why could he not JUST have cancer, at this point cancer does not seem like the worst thing. “The incidences of cerebellar mutism syndrome in children who underwent surgury is estimated only between 8 ad 21%” Aiden seems to fall in this minimal percentage. Everyday I watch Aiden trying so hard. Three hours of intensive rehabilitation a day then in an ambulance ride to the Proton Centre where we stay for the next 2.5-3 hours while he goes for the treatment and then back in ambulance to Spaulding Rehabilitation Hospital again. I feel like I am in a messed up version of Groundhogs Day, a wash, rinse & repeat cycle. The improvements he has made are amazing and I know I need to stand back more often and look at the bigger picture, not comparing from the summer but from ground zero.
When he first came out of surgury he could hardly lift his arms, today he used a walker and walk almost 20 feet (screaming the whole time but did it none the less). On Saturday we has “Speech/Swallowing Class” where they tried to clear me to feed him purée snacks. He ate 3 spoons of yogurt very well but the radiation is catching up on him and the nausea took over our session. We will try again this weekend (it is really hard because everyday he gets put under for treatment so is on DO NOT EAT list for 6 hours prior, this makes our windows to practice few and far between). We found a new ipad game with sharks that swim and eat people and fish, Aiden uses his thumb to control the shark and taps for a boost. We also found a keyboard which lights up and he seems to LOVE! He is starting to gain strength in his LEFT HAND!!!! He can also hold a pen in his right hand better then ever before and we are working on writing again, learning his Name all over again. Everyday there is something new and I know he is working so hard. I tell him everyday how incredibly proud I am of him.
Anyways, I have just been called back Aiden is waking up (2 hours later) from his second “nap” of the day. Next step to wait for results.
We arrived back at Spaulding at 7:30pm – if you did not catch that it was a VERY long day!
Wash, rinse, repeat again tomorrow