I haven't abandoned you all

[piratesmate]

Thanks everyone! Your kind thoughts & cyberhugs have really helped get us through a rough couple days here.

Today really was the best day so far - at least as far as the drugs & traffic were concerned. For some reason they didn't give her the Depakote, but I didn't realize it in time to ask the doctor why. He did give her some caffeine just to see if it would help. She had no reactions to anything today and no nausea. She was even able to eat the tuna sandwich they brought her.

The best her pain was today was a 3, but it's already crept back up to a 5. Even when they're able to knock it back, the relief doesn't seem to last.

They wanted to see her again in 3 weeks, but that puts us right at the beginning of 2 weeks of mandatory state testing so we won't go back now for 5 weeks.

 

[AlexWyattMommy]

I can not imagine living with that kind of pain everyday.
I can not imagine watching someone live with that kind of pain.

Prayers and Pixie Dust they find her some relief that lasts soon.

 

[party of 3]

good grief. it must be awful for her to live with that pain day in and day out. i really wish they would find her some relief soon. i'll keep praying for all of you deb.

 

[piratesmate]

The first 4 months of this I did an awful lot of cyring - between watching my baby in so much pain & not being able to help and fighting with doctors to get them to actually do something and fighting with the school to get her work, my frustration level was more than I could cope with.

After she had that 6 week grace period over the summer, things changed. The pain level started out at a 4 or 5 instead of a 9 or 10, the school was much more helpful & we had a new set of doctors. I'd told DH that I couldn't deal with the school again & he had to do it. I was never really sure if it was the change from JR to SR high or having DH talk to them, but didn't much care either. It seemed to work.

The doctors were better for a while - until they decided that she'd just need to learn to live with the pain & attend school regardless. Through all of that DD did seem to learn to cope with the pain much better, but was still only barely functional. Finally after a year, CHOP basically washed their hands of her - actually refused to even make another appointment! They said we might want to try Jefferson because they'd accept 16 yo's at the headache center. That's been really helpful because they're at least trying to do something!

And in talking to the other people who were being treated at the infusion center, I was really encouraged. One woman said she'd been coming there for 15 years. When on med stops working or the side effects get too severe, they just move on to something else. No one ever gets impatient or insists that she should just give up. (My phrasing not the doctors.)

So despite the fact that DD has a look around the eyes that you often see on children on chemo, I'm at least somewhat encouraged. I will confess that I'd hoped this would completely knock out the pain - even for a few hours - so they could start fresh...it just seems that all the preventatives they've given her never have a chance to work because she already has the pain.

Thanks for all your thoughts, prayers & pixie dust! DD & I both appreciate it. And our thoughts & prayers go out to all of you who have shared that you or your children suffer from migraines as well.

 

[ddavis860]

Big hug for you and your poor DD!!!