Why do I do this to myself? The house was quiet. Ty and Gavin went to sleep nice and early, so I tried to go through my paperwork. I came across a number of printouts on various clinical trials and the late night googling began. After reading three recent journal articles on AT/RTs (a tumor most similar to what Ty has), I am utterly depressed. The prognosis is just so poor. The mean overall survival rate for kids with Ty's cancer is 15 months. Ty isn't even there yet! I am so mad at myself for doing this. It simply isn't healthy for my body, mind or soul.
This is what I need to keep focusing on. This face. This amazing little boy who will beat the odds, and who looks better than ever. Anything is possible.
There is nothing average about Ty, and he will not be meeting the average expectations when it comes to his prognosis. Right now he shows no signs of even having cancer and maybe that's because he doesn't?!?! The radiation worked wonders on the original tumor, which looks to be inactive since radiation was completed in April... and there's no reason to believe that the two new tumors haven't met the same fate. Now we are treating him with chemotherapy to attack any remaining microscopic disease, and praying with every ounce of our being that it never ever, ever, ever, ever recurs. I have seen the power of prayer during my darkest days. Please keep them coming.
Ty will be getting a lot of therapy at home over the next year, and we even got the green light from his doctor to enroll him in a small pre-school program. We are finally breaking free of the bubble we have been in over the past year, and I think it is going to work wonders on Ty's esteem. I simply can't wait to see him singing songs with classmates again. Of course, I will stay with him in class when all the parents leave because of Ty's physical disabilities, but I don't think three-year olds will be put off by that in any way. They will love meeting Ty, and he will love meeting them, I am sure of it. I feel the sensation of the bubble popping and I am as excited as Ty and Gavin are when I get crazy and blow bubbles in the house for them :)
In addition, Ty is beginning a rigorous schedule of at-home physical therapy, occupational therapy, speech/language and special education. This is going to be a busy household again! You should have seen him with his physical therapist today, he was such a sport! I am excited and I have visions of a more active school year with a house full of laughter. Now I just have to figure out what to do with Gavin :) I am so afraid of germs, I think I will wait until at least January before I sign him up for anything.
Anyway, it is taking me a while to address the title of this post. I have been battling insomnia lately and I can't figure out why now more than usual. Every night when I try to sleep of course I worry about Ty (nothing new there), but lately I have been consumed with thoughts about a handful of other cancer kids who have crossed my path over the past year or so. Some that I met during our very first hospital stay, some that I shared a room with on M9 at MSKCC and some that I met more recently through various acquaintances. I have been bothering my husband with my worries, too... "You know who I haven't seen at the hospital in a really long time?" I name a couple of kids, describe them to Lou, and he reassures me that this one doesn't live in New York, or that one may be done with treatment.
Maybe I'm so restless because of pediatric cancer awareness month. I have been actively reading up on various causes and trying to share more information so maybe that has my mind racing a bit more, but I don't see why I am losing sleep over it so much now? When things at the Campbell house are better than they have been in over a year!? I don't know, but I am reaching my limits on worry in general. I think I used to sleep better in a hospital bed than I have been at home lately. It's just so damn unfair that so many kids are suffering every day. They don't get to be kids, there is so much hurt among the most undeserving population of all and it's really getting to me! And, I guess part of me is just living in fear, waiting on pins and needles for something to go wrong for Ty again. The numbers aren't in our favor and that scares me, of course. But then again, the numbers never were in our favor and Ty Campbell pulls through when he's not supposed to time and time again.
It's midnight and once again I'm pretty wired. I think I'll make some tea. Last night, Ty was totally restless, too! I think it might be contagious because I'm lying there next to him. We were both awake watching cartoons from 2-4AM. I hope that doesn't happen again tonight.
Before I forget, I have some good news to share! Ty has met another huge milestone this week. I removed his special needs bathing chair from the bathtub, and he has been taking baths with Gavin again. It has been such fun watching the play in the tub together, neither of them want to get out! Tonight they were both totally pruned. Check out the 'do.
You can be the match!
Here's something you can do. Over 13,500 kids will be diagnosed with cancer this year. The majority of whom will have Leukemia or another blood cancer where a bone marrow transplant may be required. Please join the bone marrow registry and order a cheek swab kit. It is so easy to do, it is free, and it just might save a life. Thank you :)
Goodnight everyone. Hopefully some tea will do the trick.