No new news…try saying that 5 times really fast!
Our last clinic still resulted in low blood counts. He is finally over the virus he had so it’s more of waiting patiently, keep him healthy and hope they start inching upwards. The doctors continue to discuss his case and find different tests to run each time we come in. We are back on the two week rotation. He looks great, is in wonderful spirits and doing his best to behave like a normal 14 year old (mmm hmm).
We have great things in store for him in the next few days so stay tuned for pictures and updates after the secret is revealed! “Making a wish” that his dream for the last two years makes him very happy! He has been through so much and deserves nothing but joy & happiness from here on out!
Love you JT!
Thanks for checking in on us friends & family!
xo Sabrina
Hello, Websters!I've been reading and reading to catch up on all I've missed. And now I'm all excited about finding out what your surprise for JT was/is!He is one tough kid!!!! I'm in awe of how he bounces back to fun and the norm so quickly after he has to chill out for one reason or the other. It's terrific the Hilton Head trip happened - just sorry about the fever, etc. setback in the beginning and that Jim wasn't able to go. Thanks so much for allowing everyone to keep up with your journey. Our love to each of you...Susan
ReplyDeleteHi. I couldn't find an email to reach out to you, so I'm sorry for invading your blog. My name is Gail. I work for an insights company in Chicago. And we're doing
ReplyDeleteI’m looking for PNH patients to give opinion-based input.
The short summary:
• Opinion-based input
• A company is looking at coming into the market with a potential new treatment
• Trying to understand how you view the treatment landscape
• $250 honorarium for taking part
• 1-hour virtual interview
My phone number is 312.321.8295 and my email is Gail.oesterle@shapiroraj.com. We have an online questionnaire available at http://cawi.ljs.com/SE/?st=UzPvuGR9T6toBeQzpwM42qYgjkDl7DnyjwTvz3YgF7M%3D%20&URLIMPORT=1&QUESTLIST=USERID&USERID=PNHG
Contact me with any questions! I’m really excited about this project. My best to you and your son.
-G