Monday, July 25, 2011

Continued improvement

I didn't want the news of Ty's recent visit to his old preschool and to Sissy's house to get lost in the last post, so I am sharing now.  Ty started going to our beloved Sissy's house when he was 18 months old, and we couldn't have asked for a better caregiver.  Then, when he was two, we started sending him to Kids by the Sea twice a week for a three-hour session in the morning before spending the rest of the day at Sissy's again.  I dropped him off before work and picked him up over my lunch break. It was perfect.  Ty loves Sissy like family, we all do, and he learned so much at "school."  He still sings the songs and talks about his teachers there. 

Lou and I were afraid that Ty wouldn't be very warm when we visited, but it was just the opposite.  He was whining and fearful when we first started climbing up the familiar stairway, but once he saw Miss Beryl, Miss Shelly and Miss Danielle his face lit up.  He showed me the storage benches that are filled with all of the toys he used to play with.  He even had me carry him inside the small plastic house where he used to spend so much time playing.  Gavin was having fun, too, and I only wish I was able to send him to preschool too because he is ready!  Some day soon.  It was a little sad to hear that most of his classmates have moved on and will be starting pre-K this year (Ty would have been getting on the school bus himself this September), but it also helps me to look forward to the day that Ty can do the same and brag about how far he's come.  Lou had a hard time holding back the tears when we were there... more so than I did... and I totally understand why.  Life was so great when Ty was a normal, happy kid who loved to jump up and down the steps on his way to school.  We didn't appreciate what we had and now we feel like it was ripped away from us by a force so evil and disgusting.  We can't wait for the day that Ty is back in a program where he can make new friends and have FUN for a change!

After school we were off to spend some time with Sissy, and it was like we never left.  Her house is so warm and welcoming and Gavin made a beeline for his favorite chair as soon as we arrived.  It's amazing how much they remember!  Ty was still talking about it just this morning on our way home from the hospital.  Ty was still very groggy from his anesthesia and he asked me if we were on our way to Sissy's house when we got in the car :)  Thank you, Sissy and Colleen, for such a nice visit.  You are so loved.  We can't wait to see you again soon.

I am in the process of having Ty evaluated by the special education department here in Pawling so he can receive speech, occupational therapy and physical therapy through the school.  Today he had his speech and PT evaluations and I can't tell you enough how proud I am of my little man.  He was so charming and so sweet.  He participated without complaining one bit and I was totally shocked.  He is usually so shy and so nervous when anyone comes to visit who might be a doctor or nurse of any kind.  These women were so great at engaging him in playful activities to help evaluate his disabilities.  On the PT side, there isn't much beyond the obvious that we discussed - meaning he clearly needs regular physical therapy in order to get him sitting up independently and back on his feet.  Our main goal is to get him stable and mobile which will enable him to engage in more active play and household activities.  God how I want to get him off that couch!!!! On the speech side, I was told that his receptive language is good (meaning he understands everything he is being told), that his grammar is slightly behind but nothing to worry about, but that his articulation is very poor.  Again, not a huge surprise there knowing how much trouble he has mobilizing his tongue ever since his very first surgery (his cranial nerves were very stretched at the time).  It will just take time and therapy to regain the strength and coordination that will get him back to normal.  But I was happy to hear that aside from his pronunciation he is otherwise doing well.  In fact, I was surprised by his vocabulary.  I had no idea he knew what a telescope or a calculator is! 

Three weeks and I only had to give Ty one dose of Tylenol for a headache.  Not morphine.  It's truly unbelievable.  Three weeks and he only had two days of nausea and vomiting.  This is after 11 months of non-stop headaches, nausea, vomiting and worse.  Non-stop.  I am trying to record every single moment in my brain so I can remember and appreciate these days always.  I can't pray hard enough for God to allow his improvement to continue indefinitely.  SuperTy is one amazing little fighter and he can do this.  Right now his cancer is microscopic.  May it never re-appear in tumor form and may all the remaining cancer cells die and rot in h*ll. 

XOXO and good night. 


  1. I'm so glad that Ty is doing well and getting stronger. I can imagine how great that makes you feel and hopeful for the future. Your blog has truly been such a gift. I am so grateful that you are sharing your story. Ty and your family are an inspiration. I am praying for you everyday. I really think that your boy has had such an impact on so many of us out here who have never even met him. It's so amazing. You have so many people praying for him and sending good thoughts. I hope that you know that and it can bring you a little bit of comfort.

    Ann from Buffalo

  2. I read your blog everyday. I look forward to reading it and I am always praying that what you type will be good news.

    A close friend of the family has dealt with cancer more then anyone should in their lifetime. Her mother died of brain cancer, her brother died of cancer, and her husband deid of cancer. And she ended up having breast cancer.

    When she was going through this I remember reading somewhere that cancer is a bad thing and it was created by god because the world needs a balance of good and bad to survive. But one thing God does is pick only the strongest people to handle it and teaches everyone that everyday is a gift.

    God picked Ty becacuse everyone around him is strong and that strength is what will create the miracle that Ty will be cancer free one day in the near future..

    If your family can survive your everyday obsticles then I can also survive and get through anything thrown at me.

    To me Ty has proven to be spiderman or better then Spiderman. Spiderman protects people from evil. Ty is just like Spiderman because he is protecting kids of the future by showing the doctors his cancer and his fighting spirit. What he is going through is helping the doctors. But what makes him better then Spiderman is that Ty is fighting something he can't see or feel and is inside of him. That is what makes him BETTER then Spiderman..

    Ty is my hero and I will always be reading your blog even after his body is cancer free!!

    Ty doesn't need my prayers he needs my positive energy!!!!

    Positive Energy (Spiderman's web) being thrown your way!!!!!


  3. Great update! I am SO glad he is having good days. I'm checking your blog every day and praying these good times keep going.

  4. This is so great to hear. I am glad that little Ty is enjoying his summer. I read your story every few days and pray for Ty all the time. I belive in miracles with all my heart. I am glad to hear that he is tolerating Avastin and hope that it continues working for him. I will be starting Avastin in a few months and hope I have the same outcome with it. It is good to read a positive story about it.

  5. Praying with you that those cancer cells never re-appear.. I am so glad to hear that he is doing well.