Wednesday, July 6, 2011

Big Day Tomorrow

Ty and me.  We had such a great day today.  It started out rocky, but was otherwise wonderful. 

He woke up early but had slept really well through the night so he was ready to "get outta heee-uh" bright and early (as he says).   The only problem was that he wasn't willing to hear me out when I explained to him that there aren't any stores open at 6 in the morning.  He was so upset he cried and cried early in the morning and I wasn't able to control him.  He kept telling me "I just sad at you!  I'm so sad at you!"  Aw, poor little guy.  It was so hard it made me cry, too.  Lou came to the rescue and calmed him down... he also allowed me to go back to bed for an hour so when I woke up we were both ready to enjoy each other. 

We took a beautiful long drive listening to music and had a fun morning full of shopping.  We went to a new and exciting supermarket that he had never even been to before ;) and we did several laps around the candy aisle.  We picked up our daily box of pre-cooked bacon.  We made a few returns that had been sitting in the trunk of my car for ages, and we picked up some new planters so we can transplant the sunflower seedlings that Ty grew over the past couple of weeks.  He was a joy everywhere we went.  He teased me by swinging his legs and kicking me because he's getting so strong, and he was able to hold himself up nice and straight in the shopping carts.  He is starting to gain confidence and I love that.  When we got home he spent the rest of the day laughing, interacting with Gavin and eating.  Mostly bacon and apple juice, probably more than 15 pieces throughout the day, but at least he is eating and it is pretty high in calories!  I want to see him put on some pounds.  Especially before we begin trying new chemotherapy drugs that may affect his taste and appetite again. 

Tomorrow we return to Sloan Kettering for a followup appointment with neurosurgery, simulation for his upcoming radiation therapy, and discussions with his oncology team on what we should try next as a systemic treatment (chemo) so we can try and keep the cancer for rearing it's ugly head again anywhere else in his little body. 

The neurosurgeon needs to address Ty's crossed eyes because they are still not back to normal and it's just not fair.  l already suspect that he won't have a clear answer for us, but I am still dying to hear what he has to say.  I want to be reassured that this takes time and that it will definitely go away. Unfortunately I have a feeling that he won't be making any such promises.  Poor kid has enough going on, he shouldn't have to deal with double vision and lack of focus when he's trying to watch his shows on TV - one of the few things he can fall back on to entertain him throughout the day.  I just can't believe this has happened to him. 

The radiation simulation is basically a practice run in the machines while Ty is under anesthesia so that the team can map out the area that will be treated and work on the calculations/calibrations so he can start his therapy next week.  We will be going in on a daily basis again, this time for about three weeks.  I will have more details once the radiation oncologist studies the results of the simulation and tells us what is the safest, most effective route.  I know I said in the past that the scariest part about radiation is that it is a one-shot deal... that Ty has already received a "lifetime" worth of radiation and anymore would cause brain damage... but that is only true in the area of the brainstem.  Ty can never receive radiation to that area again.  But the area where the mets appeared in his cerebellum did not get hit with much scatter from his original treatments so we have room to safely radiate that area as well.  And I am just so confident that it is going to work.  It's gonna work!

So is the chemo.  When we were focusing on radiation to his brainstem, just getting Ty through the six week course without any chemo because we didn't want to risk an infection that would delay treatment, two new lesions appeared in another area of the brain.  I am so scared of that happening again.  He needs to have some systemic drugs in his system to help prevent that.  I just want to give it everything we've got this time around.  Ty is doing well and I think he can totally handle it.  I know you all think so, too.  Our little fighter is nothing short of amazing. 

8 comments:

  1. Cindy, your entire family is amazing. I'm praying for nothing but positive info today. I love to hear about laughter nd love in SuperTy 's day. He so deserves it.

    All My love,
    Elaine

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  2. Another big day tomorrow for you guys. For a change :?

    I had a few posts to catch up on and when I saw the picture of the adorable puddle-jumping Ty it really got me. It has been a rocky road traveled for you guys since those carefree times. I'm drowning in grief and tears.

    Thinking of you tomorrow as always and never giving up hope.

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  3. I'm so glad you had a great day with Ty. You so deserved it. I'm praying for good news tomorrow. Thank you so much for sharing Ty's beautiful life with all of us. He is truly an inspiration every day to me.

    Ann from Buffalo

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  4. Amazing indeed! Sometimes I think there is not a grand enough word for Ty! He is a trooper!!

    I couldn't help but smile while reading your posts about shopping. I hope Ty got some good candy to go w/ that bacon! lol

    I hope everything goes well for y'all today!

    Love,
    Jan
    Georgia

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  5. Happy about your great day! Sending lots of prayers!

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  6. I've been thinking of Ty all day. I hope the appointment goes well today and I pray for good news.

    Love from Canada!

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  7. I pray that you had good news. Let's all keep our fingers crossed that by next summer all you are worrying about is swimming lessons..
    Hope your doctors visit went well
    Sending prayers your way

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  8. It is so wonderful to hear Ty laughing!!! It is also nice to hear what a wonderful weekend you had, it is well deserved!!!! Keep up the good work Ty!!!!! Love you guy!

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