Comments | tudorpot: Mixed Bag

tudorpot

Mixed Bag

Nov 23, 2013 12:22

Stuff is happening. Been busy, but also been sore, tired and as always, dealing with headache ( Read more... )

Comments 8

evieeros November 23 2013, 20:38:42 UTC

As a young adult cancer survivor I really cheer on Sick Kids for doing those follow-up studies!! Young Adults are pretty much SOL so anything we can find out from the kids is really important. I know Stevie Ray had Leukemia--he had ALL right? I had AML at age 20 and I'm currently tutoring a PK student (4.5) who is in his 2nd year of ALL treatment ( ... )

tudorpot November 23 2013, 23:14:46 UTC

Thanks for your advice, comments. I would say to the mum of that child, join the ALL list at ACOR - Association of Online Cancer resources - the lists are moderated. We couldn't have managed without the support, information and advice of this site. It might help you and your hubby? Where were you treated?

Has the child had a neuropsych evaluation done? This is crucial to his/her ongoing education and supports that will be needed. We were able to avoid cranial radiation - it carries with it very serious long term effects and the effectiveness is not great. It all depends on the characteristics of the ALL that this child has. I'd be happy to chat via email - I'm not good at the other chat formats. Tudorpot at gmail dot com.

evieeros November 24 2013, 02:11:35 UTC

Huh. I'd never heard of ACOR. I know my mom was an active member of the Leukemia and Lymphoma Society forums and occasionally still checks in there ( ... )

tudorpot November 24 2013, 03:01:11 UTC

You might check out ACOR for yourself. If he's still getting treatment- sounds like it- steroids are given in blocks every x weeks depending on what protocol he's on. Stevie Ray had treatment for 2.5 years, he was high risk and had pretty heavy duty stuff. There were a few cancer cells in his spinal fluid - I think if it's more than 4, it's considered brain involvement and that takes everything up a notch, and adds the potential for radiation ( ... )

Thread 6

dickgloucester November 23 2013, 22:33:12 UTC

Sounds as though the Sick Kids people are amazing.

tudorpot November 23 2013, 23:17:30 UTC

They are. The study coordinator walked us down to the echo suite for his exercise echo after the consults with docs. She then left - Cash office was closed, she somehow managed to find the cash to give to Stevie Ray, an honorarium for his participation in the study. She didn't want him to have to wait for it in the mail! Then she wanted to walk us down to the lab, even though she knew we'd spent years visiting the place. Above and beyond.