Hi Everyone,
I have had a busy week of ups and downs being in he hospital with Emily. As I
read families updates I feel I should not complain, and I guess I am not
complaining I am just worn out. I have been in touch with a doctor who is doing
research on Rhabdoid, I am wondering if they are doing stemcell research on
Rhabdoid Brain Tumors, If any of you have any questions that you would like me
to ask him, I will hold off emailing him until I can hear from any of you. I
will of course share with you any info I find out. To Marylin: I was wondering
if Ben is going to have radation, this is so important in this treatment, I only
ask beacause I did not see it mentioned on the website. I think most of us are
on the same protocol. I hope Ben is feeling better. Infections are hard to,
not just the cancer, Emily had infections from central line, she had to had it
removed 4 times before we put a port in, that has cut down on the serious blood
infections, I have been told chilren Emily's age have a hard time with the
Central Line. All of you are in my prayers.

Julie

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