It's Saturday Morning on labour day weekend. Its difficult to believe how fast time has gone by. We have lost an entire summer of family fun in the sun. Nylah and I have just woke up. I can still count on my hands how many times we have been able to all wake up together in the same house this summer. Nevan didn't get to experience his first summer break from school. Not only that but he will miss being in class because for the next 6 months he will have to be schooled from home. I'm confident though that between Anita and I and his school he will miss as little as possible. Even Nana and Nanima will help as they have done since day one with Nevan's social development.
Nevan is still in hospital today and will be for at least a few more days. The last 4 days have been about the same. Fevers, diarrhea, red spots all over his body among a few other uncomfortable side effects from the methotrexate. This will hopefully be the lowest low the doctors have told us. He has honestly never felt worse. I watched him all day yesterday and he was finally 'comfortable' from the constant drip of morphine they have given him. He slept almost the entire time I was there and is still doing about the same. I wont get into too much detail but Anita and I were up every 30 minutes the previous nights to help him through. He definitely needs the sleep.
The few minutes he was awake yesterday were quiet ones. I asked him when he woke if he wanted to just sit in my lap and cuddle. He just shook his head yes. He has a lot of "NO'S" right now so a yes is a really big yes. He just melted into my chest and we sat quietly. We played a little PS3 but he wanted me to play while he watched. He was too tired and sore. Later while cleaning the room I noticed he had woken up from his second nap. He was lying on his side starring out the window. The guard rail on his bed was raised so he had to peer through the small handle slot in order to see the window. The part of the window he could see out was probably no more than the top of the trees because of the angle he was at as well. The look on his face was pure fatigue and mental exhaustion. At 4 years old I wonder if he can even remember what his life was like before all of this. We just want him to get healthy and come home so we can remind him. These are the darkest days for sure.
Anita and I are working hard at home to organize the fundraisers we have planned. I'm in awe of how many people are willing to donate their time, ideas, prizes and money. We have had great support from many stores within our community. We are very excited and will be ready to advertise specifics soon.
At this very moment our financial situation is dire. As most people know we purchased our forever home one month before Nevan got sick. So life is more expensive in so many more ways than it was just 3 months ago. Anita has applied for support and we are still waiting for a decision to be made. I was on disability insurance through my company which has since been withdrawn and is under review. It is expected to resume next week after an entire month without pay. To make matter worse is the battle that stands before us over a $20000 insurance policy we have on Nevan that has been declined. There was a 90 day moratorium on cancer. This criteria was never told to me when I purchased the plan through my company benefits. There will be ongoing attempts on my part to fight this decision......I'm trying my best to focus on the numerous positive people now coming to our help as opposed to the very negative situation lingering. Sometimes I struggle with it.......
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