Well, it's been a long week. I got through the rest of radiation and handled it well. I'm a bit tired after each treatment, but not sick so far. On Friday, I got my first chemo treatment, Vincristine. That is suppose to make the radiation treatment more effective. I seemed to handle that well too.
My Aunt Laura came to visit this weekend and we had a great time. We practiced chucking little alien figures while my little sis fetched them for me. Aunt Laura also helped me transform some of my Transformers from robot to car and back again... my daddy is not very good at it!
It seems like I'm getting better every day. I'm able to hold my head up for longer periods and I'm willing to try and walk with my mommy. I hold myself up a little while she holds me, but just the motion of lifting my legs and putting them out in front of me is great practice. My mommy and daddy are so pleased that I am even willing to do all this. I still haven't worked out my PT/OT/Speech therapy treatments since I was discharged from the hospital. Hopefully, either PCH or my insurance company gets it together soon so that I can benefit from rehab services. My mom and dad work with me a ton, but they need a little guidance of course as I progress. PCH only had slots during rush hour traffic and we already live 40 minutes from the hospital. They had promised to coordinate with my radiation treatments, but obviously didn't. My NeuroOncologist said she'll work on getting me better times. In the meantime, mommy is working with our insurance co. Case Manager to try to get rehab visits at home, which for now would be best.
I'm still not talking or eating. I get my food, formula, through a tube. I am able to move my tongue and mumble, so making a little progress. I can't smile yet either, but I laugh a lot. :)
I still have an eye infection, which I hope resolves soon. It's pretty goopy and I've had it since Wednesday. If the meds don't clear it up soon I'll have to try a new med.
Tomorrow is Monday so back to radiation... Every day that I go in the doctors ask how I tolerated my last treatment, as if they're expecting me to get sick from it any day now. So far so good! I have to stay out of the sun, as I'm more sensitive to it now. Also, since I've started chemo we might see some change in my blood counts. This means I'll have to stay home more and make sure I'm not subjected to other illnesses. Not that I do much now, but I love going to Target and picking out a new hot wheel. I get mad if mommy and daddy don't take me out now and then.
I'll check in again soon... Have a nice week.
About Me
- Ethan Black
- Hi, I am an adorable, blonde, blue-eyed young man. I had Medulloblastoma - cancer. I had a successful resection of my brain tumor, completed six weeks of radiation, 15 months of chemo, and countless surgeries and therapies as the result of treatment effects. These entries journal much of my treatment and progress. I have come a long, long way and I am doing awesome today! Feel free to read and share my story.
Ethan, so glad to hear your treatments thus far are tolerable. First week is OVER! We will put out the good vibes that they continue for you through your journey to recovery! Day by day, you will get better and begin to regain your functionality. You have the best mom and dad to help you through this. You are a champ. I am sure your mommy and daddy are so proud of your courage! You are a strong little man that is surrounded with a lot of love. I know without a doubt, that love will help you through any challenges along the way :) We are thinking of you everyday here in CA. Don't feel bad about not being able to be in the sun, I too no longer get out in the sun. So you are not alone. Get some rest and keep us posted with your progress. :) We love you!
ReplyDeleteEthan,
ReplyDeleteI am so glad that Aunt Laura was able to come visit. I want so badly to be there. I sure hope this week goes even better than last and that they can get your therapists coordinated. Mom and Dad are awesome...I am sure that they are proud of all your hard work. Keep it up....your laughter is good medicine for all. Keep kicking those legs and building cool stuff. I can't wait to see you. I hope your eye feels better. I am off to work now....I work on eyes every day. Cool compresses help it feel a little better till the meds work. I love you. Give mom, dad, and sister lots of hugs for me. Love you