Tuesday, July 5, 2011

Woo Hoo! Happy Fourth

We had a wonderful weekend, and I have every intention of uploading some great pictures and posting over the next couple of days.  Ty didn't make it into the pool yet, he is too apprehensive, but we did get his feet in the water and that's a great start.

Ty's eyes still aren't 100%, but he has been improving.  Most importantly, he is seeming to feel better and better about being home again.  It just takes some time.  It is always hard to come back from the hosptial, especially this time since we had to spend all that time in the PICU, finally getting discharged only to end up back in Urgent Care at Sloan just two days later.  Ty was totally confused and upset and I don't blame him.  He told me that he is mad at the hospital.  It took him several days to get comfortable again, but I think he is almost there.  He was singing songs today and smiling a lot.  That's all I want for him right now. 

Tonight we watched an amazing fireworks display at our neighbor's house.  Really, it was huge!  They went all out and it was so beautiful.  Ty stuck it out for the entire show, and he really seemed to enjoy it.  I was so happy to hear him laughing and having fun.  I didn't expect him to hang in there for so long, especially because he gets upset around crowds, but he did great!   He kept yelling, "Woo Hoo!" hence, the title of this post.

We will be meeting with Ty's radiation oncologist on Thursday to discuss next steps.  She wants to treat him with a three-week course of IMRT (the same radiation he had to his brain stem), but Lou and I have a lot of questions, first.  If we agree, it means I will be driving into the city every day for three weeks starting Monday.  Again!  Really, I don't mind, though.  Anything to beat the cancer up.  Thursday is also the end of his most recent 28-day chemotherapy cycle, and we need to discuss with the oncology team whether or not he will be put on a new drug later this week (since the Cisplatin clearly didn't work).  I would like to at least administer the Temodar again, since we don't know whether or not that was effective last time (it really didn't have a chance to prove itself), and it didn't seem to knock him down too bad.  His red and white blood cell counts remained pretty stable throughout the course.  That is important because we wouldn't want him to become neutropenic during radiation and put him at risk of having to postpone that treatment for any reason.  Right now it is most important that we can treat the site of his most recent tumor resection with radiation.  Chemo is secondary until that is done.

On Friday we said goodbye to a Doctor at Sloan Kettering who just finished his fellowship and is moving back to Canada.  He came in on his day off just to see Ty before leaving.  Vijay, we love you and will miss you very much.  Thank you for always being so positive!!  I hope you don't ever change.

Here is a picture of Ty that was taken on the 4th of July 2009.  He was happier than ever just splashing around in a puddle he found.  I love this kid!!  Can't wait to see him on his feet again.  Two more days of steroids left.  Hopefully he will continue to get stronger as time goes by. 

6 comments:

  1. I LOVE opening your blog and reading good news, day after day!! So happy for Ty and you and Lou - and Gavin, of coure!

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  2. I pray the days just keep getting better and better for lil Ty and your family. Reading your happy blog totally makes my day. I will never stop praying for lil Ty to become cancer free. Thank you for posting and cant wait for the next one!! xoxoxox

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  3. Keep getting better SuperTy. I'm so glad you enjoyed the fireworks. I just know your gonna enjoy the pool soon too. You continue to amaze me. You are my hero.

    All my love,
    Elaine

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  4. He is so stylish with the red hat. Just adorable!!

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  5. Hey, I just wanted to pass along this info in case you end up having to make daily trips into the city. You may have heard about the Am Cancer Society's Road to Recovery program. I'm familiar with it because I'm a volunteer driver. We drive cancer patients from their homes to their treatments and back home again. If the patient is a child, we drive them and their parents. It is a wonderful service and it may be available in your area. Call 800-227-2345 to find out. We can help take the extra burden of driving to the appointments off of your shoulders. :-) We are praying for you always, ToniAnn Guadagnoli

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