Tuesday, March 8, 2011

So far Ty is doing well

It was hard to figure out a way to explain to Ty what is happening.  Why we have to go to the hospital every morning and why he has to go into that scary room with the huge machine, go under anesthesia and then gear up for the long drive home. 

Lou was great.  He told Ty that he has to go for Super Hero treatment every day, and that we have to be patient because it's going to take a long time before the super powers begin working.  He said that Spiderman had radioactive blood, and that Ty's radiation will make him strong like Spiderman.  I guess at 3 years old that is a good enough explanation :)

So far, everything is going okay.  Ty doesn't seem to be suffering from any side effects, and he comes out of the treatment feeling pretty good.  His bigger problems lie in the steroid myopathy that he suffers from and the fact that his brainstem is still so inflamed.  He isn't able to eat lately because of this, even when he wants to (we feed him formula through his G-tube) and he still has bouts of nausea and head pain.  It sucks, but it can and has been so much worse so I am happy that he is doing as well as he is. 

In fact, today Ty took a bath.  I put on a bathing suit and I got in the tub with him because he is otherwise too weak.  It was a very special moment, one that I will always cherish.  He hasn't actually gotten into a tub since December and he really enjoyed the feeling of being submerged in the warm water.  He even smiled wide and told me I was tickling him when I washed his feet.  Just knowing he could feel me washing his toes, and that he was enjoying it was so reassuring.  At one point he when he was quietly staring out the window I asked him if he wanted to get out and he softly said "no."  It felt great to be able to give him that time doing something that felt really good.  He deserves that.  Obviously he deserves much, much more than that... but for now we will take it.  Baby steps are okay with me, as long as they lead him to recovery. 

Tonight, the top of his head smells even more delicious than it did when he was a newborn.  I can't stop putting my nose to him.  Big smiles :)

Thanks to all of you.  Here is just a very short and sweet video clip of Ty back in November during his second round of chemo.  He says "thank you everybody!" 

video

18 comments:

  1. Cindy,
    Your post reminds me of the turtle and hare fable. The turtle wins because he is SLOW and STEADY. That's Ty :)

    SuperTy is amazing and he is a fighter.

    We will continue to keep you all in our thoughts and prayers.

    Love, the Ferranti's
    PS I sent you an email re: Dr in Queens. :)

    ReplyDelete
  2. Ty continues to be in my thoughts and prayers. I am adding him to our church prayer list in Tyrone, GA. You have an amazing beautiful little boy. You all are held in my heart. Continue to cherish those snuggle times.

    ReplyDelete
  3. Cindy,

    You and your husband are so brave. I swear I would have fell into pieces a long time ago. I admire your strength. You are absolutely right, he deserves so much more. You have an angel on earth, and I know you probably hear this a million times, but I really think Ty will beat this. He is like a super hero, because he is so strong and he just keeps on fighting! Thats what super heros do!:)

    I pray for your family every night! Your son and your family have truly touched my heart.

    Goodnight!

    Joy Marielle
    Baltimore, MD

    ReplyDelete
  4. What a joy to hear his voice. What precious time you shared in the bath. Prayers are will you all...

    God Bless,
    Debbie

    ReplyDelete
  5. He is the cutest little guy.

    What a great solution Lou came up with for the explanation! I love it.

    I can think of many solutions for the Superhero. Let's see - the right dose of radiation in the perfect timing, the perfect, young, healing cells that are still an overwhelming majority of Ty's body, a whole lot of love and prayers from all over, top medical care from loving individuals, a thousand angels watching over every moment...

    ReplyDelete
  6. I have been following your updates for a while now and every time I read them I am amazed at the strength you and your husband have. I understand that we as parents must be strong for our children,but you and Lou take it to another level. With you guys as his role models,it is no wonder why Ty is such a fighter and will beat this.

    Ty is a superhero,no doubt...and the source of his powers are his mom and dad!

    ReplyDelete
  7. Cindy and Lou, Ty and Gavin are truelly blessed to have such amazing parents as you two! I believe god got it right when he blessed you both with these two little angels, he knows that you two are strong enough to see this through. I did finish Ty's
    special gift and goody box for Ty & Gavin will get it in the mail in the morning, am sending special powers with it to help brighten his day! Lots of Hugs & Kisses for Ty & Gavin.
    Keeping you all in my prayers here in Arkansas!

    ReplyDelete
  8. Cindy,

    I am happy to hear that Ty was feeling up to a bath. It is the little "normal" moments that I am sure you treasure. Please know that we all pray for him every day and are sending our best "Super Power" thoughts his way! He is the strongest person I know. -much love, Tammy and Emilio

    ReplyDelete
  9. The bathing scene you write about is sooo special and touching!

    Thinking of Ty and all of you every day!

    ReplyDelete
  10. Campbell family, I find it hard to ignore the parralles of the circumstances you face and the story of Secretariat. I highly recommend the movie if you have not seen it.

    http://www.youtube.com/watch?v=kBM3lzGe1HY&feature=relmfu

    I hope that link worked....

    Ty, you are a throughobred just leaving the gates. Cindy and Lou just don't fall off! You are not going to just win this race, you are going to blow it way!!! GO TY GO!!!!!!

    ReplyDelete
  11. I know there are so many children fighting illness everyday but I am really touched by Ty's story because his personality is so much like my son's. The way he continues to fight and be so spirited even when he's weak is very inspiring. It has made me realize not to take any moment for granted...I think I'll be slipping into my bathing suit tonight to hang out with Aiden in the tub!

    I hope you and your family know that your story is making an impact! From hundreds of miles away, my small contribution to Ty's fight will be my time; I am taking a class this weekend so I can volunteer for the Make A Wish Foundation of the Mid South. Keep sharing your story!

    Continued prayers headed your way from Memphis.
    ~Bridget

    ReplyDelete
  12. Wow! I was so touched by this posting. As we see, it is the small things in life that matter to the little ones, and some of us big ones!! :)

    I couldn't help but cry at how sweet this post was. The thought of you in the bath w/ Ty, I am sure he loved that so much!!

    I look forward each day to reading your updates and hoping everyday you will say "Ty had a GREAT day"! He is the most precious boy! I have a 13 mo. old and reading what you go thru and thinking of my baby boy is the reason I get so emotional. I really can't imagine! But, I do know, you and your family are VERY strong!

    Stay strong and give Ty an extra hug from someone here in GA!

    Jan
    Georgia

    ReplyDelete
  13. I have been praying for Ty so long and asking that somehow, someway he will make a miraculous recovery. I can’t even begin to imagine how you and your family have the strength to face another day. Ty is so beautiful and he deserves to have the most out of life. I would love to send him some “happy gifts”, my son Wesley 2 in May; loves to get them and it would be an honor for he and I to send some things to brighten Ty’s day.
    Be there for him always, I pray for your strength. I burst into tears every day that I check in and I am not even there. I wish you all the best.
    Ty is loved, very much so.
    Mary King
    Georgia

    ReplyDelete
  14. Prayers going up for Ty daily! I just finished 6 weeks a radiation and it flew! Praying God has his healing hands on Ty through this and that the radiation works miracles!

    Susan Watkins
    Irving, Texas

    ReplyDelete
  15. Such a sweet, precious little boy! Prayers of course are still with you all.

    ReplyDelete
  16. Thinking of you all every day and praying that Ty receives the strength he needs to get through this - and be done with cancer once and for all! Stay strong, enjoy the moments you can (as you have been doing). Have faith. xo

    ReplyDelete
  17. I thought of Ty this morning as soon as I woke up, he just popped into my thoughts. It's so heart-warming to read about how much you cherish your time together. Lots of healing thoughts and prayers sent your way.

    ReplyDelete
  18. The thoughts of Ty enjoying a nice warm bath with Mom brings me to tears. He is just an amazing little boy and so happy with the "little" things!
    Cindy and Lou-It is no wonder you are so strong with that beautiful little face looking up at you with all of his Superhero strength! :)
    Stay strong Little Man :)
    God Bless from RI!

    ReplyDelete