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.