Tuesday, January 4, 2011

Additional roadblocks

Ty's radiation treatment, which was originally supposed to begin on Monday, has been postponed. Lou and I came in to talk to his oncology an neurosurgery teams this afternoon to get a better understanding of what the new issues are.

First, Ty has his doctors generally confused, this time in a good way. When I tell his doctors that he is still playing, smiling, and even walking across the room with little help, their jaws drop. They are also shocked by the results from his most recent scan.

We trekked into the hospital last Monday in 18 inches of snow because we insisted on an MRI pre-radiation, and we are so glad we did. It turns out that his disease has not progressed much over the past 3 - 4 weeks, which is highly uncharacteristic of lepto-meningial disease. In fact, there is a nodule on ty's spine - up against the spinal cord at C5 -that had grown so rapidly in previous weeks that our doctors didn't think Ty would see Christmas. I am telling them it is the power of prayer, a Christmas gift, but they want to explore this further just as a precaution before we begin radiation (and, of course, we agree).

They suspect that the disease will again begin to progress rapidly in upcoming weeks so the doctors are being very cautious about giving us any false hope, but I will never lose hope for Ty so they shouldn't be concerned about that. There is some controversy over the lesion I mentioned on C5 and whether or not it might be an infectious abcess instead of a new tumor, but the biopsy procedure is complex and risky so Lou and I prefer to keep him home and follow up with another scan next week for additional clarity. His surgeon agrees that a biopsy is not necessary right now, but if we can't determine disease vs. Infection in the next couple of weeks, a biopsy will be required in order to start radiation because on the off chance that it is an abcess, radiation would be deadly because it would cause the infection to spread.

We also discussed the option to swap out ty's shunt so it has a lower pressure valve. The purpose would be to try and better control the hydrocephillis that is causing the majority of ty's head pain. Another complicated matter with too many details to share.

So, Lou and are faced with a new round of difficult decisions. In the meantime, we are rushing home to enjoy another evening with our special boy who is doing so well sometimes we forget he is sick (almost). I am grateful for the confusion because while all of this debate is going on, Ty is at home, he's feeling good, having fun and laughing out loud. God bless him always.


  1. What a gift-
    Prayers continue going through Long Beach!!!

  2. it makes my heart sing to know how high his spirits are and how well he is feeling (overall). we are all carrying you in our hopeful hearts. lots of love from louisiana!

  3. Never giving up! This is great news for a new year with new HOPE! Love you!

  4. I am a big believer in the power of prayer and positive thinking. Our family continues to send both to Ty and all of you. So happy to hear that he is feeling good. Keep hoping!

  5. I have complete and total faith in you and Lou to make the perfect decisions. Also as I've said before, Ty's body is its own healing machine and I have complete faith in that too! We don't have any reason to give up hope ever ever.

    When you are feeling like you can't feel positive, just relax knowing there is a powerful stream of positive thoughts and prayer running at all times for Ty. Everyone who loves you (and that's A LOT of people) are keeping this stream flowing constantly. Woo hoooo!!! Hop on a tube!

  6. I see Ty's bright smile all the time at the bank and it brightens my day. I pray for him all the time and he is always on my mind. Thank you Cynthia for bringing him to the bank so I could meet him. Please stay positive!!! Jodi

  7. Cindy - Love and prayers are coming from Illinois every day. My heart is filled with happiness to hear that Ty continues to feel well. I have no doubt that God will help you and Lou to make decisions that are best for Ty. I will continue to pray for all of you.

    Thanks for sharing your journey. I can't imagine all you are going through, but never forget how many people are with you every day in spirit.

    Love and hugs,