How can I even explain the relief we feel today? Or, the fear we had earlier today? I can't find the words. All I want to do is shout out: "Ty's scan is clean! Unchanged! Stable!"
This means that we can move forward with the new chemotherapy regimen in just over a week: metronomic chemotherapy. Ty will be receiving very low doses of various chemotherapy drugs on a daily basis by mouth (we will be adding cyclophosphamide, etoposide and thalidomide to his regimen). If this continues to work, this medication approach will become our new way of life for a while. He may or may not lose his hair. He may or may not feel very sick. The combination of these anti-cancer drugs aren't being given in doses strong enough to kill tumor, but now that we have validated the fact that Ty's disease is microscopic it should be effective in preventing new tumor growth, even if the cancer has otherwise become resistant to any of these medications. How long will we have to do this? That, for now, is indefinite. We will have MRIs every two months and we will have to figure it out as we go along.
The warnings and the side effects are all very scary and I don't want to spoil the good news by sprinkling all of my new fears into this post, but the trial results are very promising and I am just so hopeful!!!! I think our little fighter is going to do just fine with this and hopefully he will be able to keep enjoying life like he has over the past month or so. I see so much of his old self coming back to life. He was always such a clown, even before he could talk, and here he is clowning around with me yesterday because he wouldn't allow me a nice photo.
This is the real Ty. Except for all that dark hair! I don't think he would be this dark if it hadn't been for the steroids because he had light blond fuzzies coming back after chemo. The steroids made his hair grow in a completely different color and texture, but now that he has been off them for a while I am happy to report that it is getting softer and curling up again. Just look how cute! And yes, he is sitting up on the floor playing with blocks. Haven't seen that in almost a year.
In the meantime, me and Lou want to treat Ty to every kind of fun thing we can think of. He is feeling good and we don't want to waste one precious day doing nothing. We will be visiting with family a lot, I'm looking into a trip to Sesame Place, planning his birthday party (October 4!!!) and tomorrow we are being treated to a very special day at Yankee Stadium. His very first baseball game. We are all so excited and I can't wait to share pictures tomorrow.
It's been a long day and I really should try to settle down. I guess I am just so wired from all that we've been through today! I am going to sign off and try to get some sleep. God has answered our prayers today and I can't thank you enough. THANK YOU ALL INFINITY! THANK YOU, GOD!
Tomorrow, please think of our friend, Grace , who also suffered a brain tumor and finished her treatment in February (woo hoo!). Tomorrow she will be getting an MRI and I pray that she gets the same news we did - clean, clean, clean. I was in her mom's shoes just last night and will go to sleep thinking of her tonight. I also ask you to please remember all of the 40,000 kids who aren't returning to school because they are in treatment for cancer. Countless others are back in school, but missing a beloved sibling or friend who is fighting for his or her life. Childhood cancer affects everyone and I am so grateful for the multitude of posts and emails I have seen spreading the word. You are all my best friends, I love you and I can't thank you enough. Goodnight :)