I am always reading things online that have to do with DIPG. New clinical trials, what to expect and things from other DIPG moms. I am learning that no ones knows much about it. There is no cure, but one girl was diagnosed seven years ago and still doing well. She is the longest known survivor. Although they didn't treat the disease any differently. So some treatments work well for some kids and don't work well for other kids. Right now radiation is the best treatment. It shrinks the tumor and gives you more time. In about 6 months they expect the tumor to grow and be unstoppable. Doctors give kids with DIPG anywhere from 3 months -12 months to survive. Alex was diagnosed in November. This is so UNEXCEPTABLE! Out of the millions of dollars being spent on cancer research. DIPG gets between 0-1% of it! The treatment for it hasn't changed in like 30 years. I can't believe it! Why wouldn't they do more for the worst type of pediatric cancer? WHY?! I just don't get it.
That's enough ranting for today. Alex is having a hard day and I guess it makes everything harder to deal with. He is sick to his stomach and has had a hard time walking. He gets dizzy being up and needs help with the simplest of tasks. It worries me, this is suppose to be the "honeymoon" period. What does that mean for Alex? Time is against us and I feel like it is a constant battle. I keep counting back to when he was diagnosed and think how much longer do we have? How many more good days? There's so much more he needs to see and do. How are we ever going to show him everything in time?
We need a lot more time, I wish time could just stop for a while. But it won't.... no matter how much I wish it, it ticks on.
Hang in there.
ReplyDeleteHugs & Prayers.
Never give up!! LOVES!!!!
ReplyDeleteMaybe you've seen this already, but here's a clinical trial for DIPG treatment: http://clinicaltrials.gov/ct2/show/NCT01502917
ReplyDeletePraying for little Alex and all of you!
ReplyDeleteDon't let those doctors give the timelines, they don't know and they never will. Just enjoy your boy and love him. That's all you can do. It's a hard thing to think about. Poor little boy and the whole family too! I hope he feels better soon.
ReplyDeleteTressa Jolene's cuz
I know how u feel and what u are going through. My son is 5 and was diagnosed in November of 2012 and is now in the hospital with drs saying that it is just a matter of time. I will say a prayer for ur boy.
ReplyDelete