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06-19-09 11:59 PM
Denise Goyack
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Hello Everyone,

My name is Denise, last month we found out our 20 yr. old Steven has Stage 4 Neuroblastoma. What a shock, his tumor is in the adrinal gland. The cancer has already spread to to bone marrow.

We live in live in the chicagoland area. Have already been seen at childrens in the city. ( so not happy with them, long story) If there is anyone around our area that might have any information to share we would love to hear from you.

Thank you,

Steve and Denise 

 

06-28-09 09:11 AM
Drvasilios
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Hey Denise,

   We are also in the Chicago area and our 3 yr. old son was just diagnosed with Stage IV NB a month ago in Charleston, SC, but we transferred him to Comer Children's Hospital, in Chicago. Please tell me about your experience, if it was there.  So far he has been getting good treatment and just finished his first round of Chemo.  Would love to talk. Thanks,

Vasilios

06-30-09 11:38 AM
Denise Goyack
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We are just now getting into the U of C, We found out about the Comer Hospital by doing our own research. I have heard nothing but good about them. I e-mailed Dr. Nachman, he responded right away. What I like is that he works w/ 16-24 yr olds. !!!!!!

 We are just happy not to continue at Childrens Memorial, for thoses of you who are going there GREAT, they seem to do better with younger kids. All anyone ever said to us was about our son " the problem is he's 20 yrs old.  I can't tell you how much I hated hearing that day after day from the Staff.  Can't wait to meet Dr. Cohn. her staff is very helpful. They are helping get all records to the doctor BEFORE our appt; this way no more time is wasted.

Maybe we will meet at the hospital.  Are you planning to drive up for every treatment ???

 

06-30-09 11:53 AM
Donna Ludwinski
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 Denise--are you going to go to the NB conference? A few other parents with older kids will be there...

07-10-09 11:40 PM
Denise Goyack
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Steven had a bad time with his last chemo, he ended up back in the hospital for a week. I didn't sign up because I didn't know what was going on.

We are planning on attending Anna's fundraiser on Sat. July 18 th.

 

 

07-11-09 10:37 AM
Drvasilios
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Denise, please visit us when you are there... Ask for "Yano".... He is 3 yrs. old and we are there just for chemo treatments right now for 5 days, then they release us to go home.  Would love to meet you.  Yano just finished his second round of chemo, but has 4 more to go plus stem cell transplant. Look forward to meeting you and Steven... best of luck to him.

 

BIlly

07-14-09 03:26 PM
Denise Goyack
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Hello,

 We have an appt, tomorrow at at 10am. We will ask around for you. Hope all is OK.