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Posted by Tina Seth, Aleah and Joshua Cornelius (65.144.9.56) on 00:18:56 13/10/04
In Reply to: Update #104 posted by LauraTubo
Hello Laura, I just wanted to let you know that Aleah flew thru her radiation and is now doing the study with monoclonal antibodies Ch 14.18 and the Accutante. If you have any questions, please don't hesitate to email me. The only thing with Radiation for Aleah is that with her new hair growth it left a great big bald circle on her left side of her head and her hairline in the back starts higher than normal. It was such a breeze for Aleah, they of course gave her the sedation meds every day so it wasn't bad at all.
The Accutane started yesterday for Aleah. We found that putting the pills in some water and softening them up helps and then putting them in applesauce to swallow easier. And the Antibody study so far hasn't been too bad. The first day of the Monoclonal antibody she experienced severe pain, but the second day got better. She will be doing the Interlukin2 at the end of this month. The GmCSF is just like GCSF and she didn't have any side effects at all from it. A little EMLA or sub Q port does the trick.
Were you talking about the COG Antibody or The Sloan Kettering Antibody Study?
Aleah is on the COG one and we are doing it at UK Children's Hospital.
I check in on Joey often, and just wanted to let you know I don't mind at all if you want to ask me anything. I value the friendship that comes from other NB MOMS and know I would have loved to have someone to ask about some of this stuff prior to facing it.
Give Joey a big hug, keep your spirits up and keep in touch. You do a great job of keeping everyone updated, I know it is such therapy to write and get the feedback and support.
Prayers for Joey and Aleah,
Tina Cornelius
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