Tuesday, January 3, 2012

Welcoming future worries

Sometimes I talk tough.  I try to be strong.  I curse cancer and I pretend that cancer fears me.  But in reality, I think you all know that I am plagued with worry.  I am up all night.  I bite my fingertips until they are raw and bleeding.  Constantly.  But it's okay, because my fear keeps me alert.  It keeps me capable of seeing all possibilities, evaluating them, analysing them and coming to terms with them.  Today, I started coming to terms with a fear that I never really considered before.  And, I am trying to remember how lucky I am to even be burdened with a wealth of new fears.  Fears about Ty's future and what it might bring. 

HAHAHA.  I know.  I am supposed to be living day by day.  I try!  I do!  But like I said yesterday, it isn't going to be an easy resolution for me to keep.  In trying to keep with this mantra, I will share with you my short-term perspective on a potentially long-term fear.

As you know, Ty recently suffered from what is considered a late side effect of radiation to the brain.  There was an isolated incident - a "cerebrovascular accident" - that has left him almost paralysed on the left side of his body.  Being the worrisome mother that I am, I began googling and reading up on a million studies that have been published about side effects of radiation.  Wow.  There are a lot of things that can happen.  Bad things, especially considering how young he is.  And any one of these detrimental things can happen years and years after treatment is completed (vision and hearing loss, mental impairment, delayed cognitive development, stroke, seizure, intra-cranial swelling, neuropathy, etc.). These are all things that Lou and I didn't really have a chance to absorb at the time of treatment because we were so consumed with doing anything and everything we could to keep our son alive.

Despite all of this, I am grateful for radiation.  I am so glad that we were able to incorporate this into Ty's treatment because it saved his life and it killed his cancer once and for all.  I know this to be true with all of my heart.  I will not sleep well for a very long time, and neither will Lou, but we are happy that we are worrying about Ty's future.  Thrilled.  There is not an ounce of sarcasm in that statement, we welcome the new worries with open arms and clenched fists.  Don't even think about it.  Leave him alone!

Lou and I have been emailing our doctors about Ty because we want a better understanding of what we can expect as far as his physical progression is concerned.  We know that his recovery from the vascular anomaly will be a slow one, but how slow?  And, how much will he recover?  We can't be sure just yet, but we pray for a full recovery and we approach this latest setback with confidence.  We are so proud of Ty.  He tries so hard, and he makes us light up every time he says he wants to try walking again.  He is one determined little guy.  Our little fighter.

Thank you for all of your continued prayers and support.  Ty will be going back to pre-school tomorrow morning and he is looking forward to it.  I will be sure to report back on the fabulous arts and crafts he brings home :)  His case will be discussed at tumor board on Wednesday and I will be sure to report back on any potential changes to his therapy as a result.  I am anxious to hear the collective opinions of the radio-oncologists, neuro-oncologists and neuro-surgeons that participate.  I know they all have as much faith in Ty as we do, but I still look forward to their reassurance. 

Goodnight everyone.  XOXOXO from all of us.   


  1. My heart bleeds for you as a parent. But as much as it pains you to look to the future, try not to get caught up in it. There's already too much on your plate, as I know you know. Keep that constant thought about living each day to the fullest as though it were the last. I'm just curious. Does the school expect to have any suddent symptoms from Ty, such as blacking out or nose bleeds or anything that would make a teacher fearful? I know I often think of my 3yr old in daycare and just worry about the little things. But I know in Ty's case it must frighten you leaving him there. You're so strong. I don't know how you do it. God Bless all of you!

  2. I hope that Wednesday you get some better understanding and direction from the experts. I pray that all of the right information comes up between them.

    I want to say I'm so sorry you are plagued with worry all the time. I wish I could take it away. Your poor, poor shot nerves. It's enough to drive any person crazy. You are doing your very best and I'm so proud of you. You are a great mother and protector of your son. You and Lou both. Just hang on. We can still expect the best.

  3. I hope Ty's return to preschool was successful! Continued prayers from Memphis.