Monday, May 7, 2012

Trying to keep my head up

Being home has been nothing short of depressing.  I wish with all my heart that I could be more positive, but it's the truth.  It's been really hard watching Ty like this.  Facing the new reality, yet again, that his life is so incredibly messed up.  He is so sad, too.  He cries all the time, but he also smiles easily.  That's just Ty.  He will belly laugh at the silliest joke and the most meager attempts at being funny, but he may also break down into hysterics at any given moment.  It's been tough.  I can't imagine how he must feel, being back home surrounded by all of his favorite things that he can't play with anymore. 

Anything but cancer, right?  Well. Lou and I certainly don't say that anymore.  It was one year ago yesterday that Ty's MRI confirmed two new lesions in his cerebellum that were growing rapidly.  That was one of a dozen most difficult days we faced during this journey, but learning about his radiation necrosis was even more difficult.  At least there are proven treatment options for cancer.  The brainstem necrosis diagnosis has been a more difficult pill to swallow.  The idea that he is forever paralyzed is not even something that I will entertain.  The thought of necrosis breeding necrosis and ultimately leading to his loss is not even a realistic possibility in my mind. I still have so much hope that Ty will recover 100% because, why not?  What's the alternative... to despair?  That's not going to help anyone.

There are small signs of improvement with every day.  Today I can note two things that I got excited about.  First, he was chewing a piece of candy on the right side of his mouth.  He hasn't chewed a piece of food on that side of his mouth in over a year, so it was very strange and exciting to witness.  His oral motor must be getting stronger!  At therapy today I also noticed that he is able to rest his hands up on the tray that attaches to his wheelchair.  The last time he was in that chair (thursday) we ordered him some bolsters that would hold his arms in place because they kept sliding down, and today we realized we probably won't even need them.  Oh, and yesterday he was drinking juice again.  For the first time in months he expressed that he was thirsty and interested in drinking something instead of being forced.  He is able to use a straw really well, again, and that is amazing. 

Hope is so healthy.  It gets me through each and every day. Whoever made up the phrase "false hope" anyway?  That's an oxymoron. 

 

5 comments:

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  2. I know the sadness and discouragement must seem overwhelming at times but you seem to always find a way to stay positive and your strength will pull you through again and Ty's strength too. He is an amazing little fighter and he is going to keep fighting this new obstacle. He is an inspiration to me every day. Stay strong and give yourself a break if you want to feel sad or mad once in a while. Keep the faith and remember how many people are praying for Ty every day!

    Ann from Buffalo

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  3. Persevere. The power of prayer and love can move mountains and hoards of us love and pray for super Ty!

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  4. Praying for you guys. So sad that you're so sad. Remember Ty has proved a lot of really smart people wrong time and time again. Don't give up hope--he WILL do it again.

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  5. Hy Campbells, and sweet Ty-man,

    I want to tell you about a special wee tool we use in Germany for paralysed children that may speed things up a bit for Ty, it sure did for my little man.
    It could be anything that vibrates, quite severely, we had a wee fluffy beetle. The Occupational therapist used it to make him feel his limbs again and create new synapses in the brain. Basically, you use it a few times a day, all over his hands and legs (start with the hands) and then use some normal oil or moisturiser to massage them. The more he feels his body again, the faster he will be able to control it again. It may take a few months to really work, but if his hands work again, at least he can play with his toys again.

    Steffi

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