Tuesday, February 22, 2011

Getting better day by day

I am sitting in bed listening to Lou read Ty a bedtime story.  It is music to my ears to hear Ty chime in on his parts during "The Little Mouse, the Red Ripe Strawberry, and the Big, Hungry Bear."  It's such an adorable book, and Ty smiles from ear to ear with every turn of the page.  This is normal, 3 year old stuff, but less than two weeks ago I wasn't sure I would ever see this again.  What a gift. 

So far, each day at home has been difficult, but getting easier.  Ty is still suffering with head pain and nausea/frequent vomiting (as should be expected), but he has an amazing fighting spirit that keeps us all going.  I am looking forward to telling you all about how amazed we are with him one week from now, when he will be even more active and even more outstanding considering all he has been through.

Next steps are unknown.  I spent a lot of time pulling together a ton of reports and imaging to send off to Mass General for proton beam radiation therapy.  We don't even know if Ty is a candidate, but we are hoping it will be an option because proton beam is specifically geared for situations like Ty's where there is a focal tumor in a dangerous place (i.e. sitting on the brainstem).  It would allow us to treat with a much higher dose of radition without the same level of damage to the vital areas of the central nervous system.  If proton beam isn't an option because of the residual tumor that still exists on his brainstem, we will either be following up with an alternative radiation treatment at Sloan Kettering with simultaneous chemotherapy at a lower dose, or we will be taking our chances at another round of high dose chemotherapy in the hopes of shrinking the tumor prior to radiation to reduce the long term side effects and increase the chances of getting to Boston for proton therapy.  No matter what we decide, we will need to give Ty at least another 2 weeks to heal, so we will keep you posted on all of this. 
'
In the meantime, Ty says "bye bye" and goodnight with all of his love.  XOXO.  Thank you so much for caring and for keeping tabs on our special boy as he continues to fight this courageous fight.


14 comments:

  1. See video's like this gives me HOPE...I want to thank you for sharing Ty's story...you are an amazing set of parents...May God keep his embrace around your whole family...Love & Hugs to you all.

    ReplyDelete
  2. That video made my day. Ty you are such a beautiful child, keep up the fight little man, you’re going to beat that cancer up.

    ReplyDelete
  3. A good few days for some deep breathes. Can imagine not sighs of relief, but good days to fill the lungs with fresh air instead of catching breath from sobs...Cindy, you are truly amazing and that little man of yours, wow, a gem, a gift, a star. Imagine Lou and Gavin are as well!

    ReplyDelete
  4. Thanks for the beautiful video. He is such a miracle. Keep fighting Campbell family, we will keep praying.

    Love from IL,
    Maria

    ReplyDelete
  5. Awwww...he is so stinkin' adorable!! We love you too Ty, so very much!!! Mama, give him lots of extra hugs and kisses for us!! XOXO

    ReplyDelete
  6. Keep up the good work. Ty you are such a special boy :) Thinking of your family-

    ReplyDelete
  7. it's great to see ty doing well. we are only 47 "likes" away from 1000 likes on the "get ty campbell on the ellen degeneres show" facebook page. so if you see this and are on fb, please like and share the page! keep fighting ty!!!

    ReplyDelete
  8. I still can't get over how such a horrible disease can effect such an adorable boy and loving family. It's so amazing the strength TY posseses and to see how great he is doing home from the hospital is truly a gift from God. He is a blessing and forever in my heart and prayers. Much love and positivity going out to Ty and the rest of the fam!

    ReplyDelete
  9. He is BEAUTIFUL!!!!!!!!! Thank God he has parents like you's. God Bless.
    So many petty things in life that people do, react to, and then there's this. Nothing else really matters.
    All the world and then some,

    Dana

    ReplyDelete
  10. That video is worth a thousand words and a thousand smiles!!!!!!!! xoxoxoxo, Juliet

    ReplyDelete
  11. I'm sure I write for a lot of folks when I say that your blogs are a true testimonial to the power of prayer.
    May God continue to answer your prayers!

    ReplyDelete
  12. p.s. Ty looks remarkably, incredibly great!!!

    ReplyDelete
  13. Come on Ty, you can do it little boy! We're all praying! We all are! Our 5yr old Danny says feel better. Our 2yr old Patrick says Buzz Lightyear, to infinity and be-un =) Get better cute little boy.

    ReplyDelete