Sarah your not alone

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Sarah your not alone

by Diana_G_2 on Sun Oct 04, 2009 12:00 AM

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First I would like to send out my sympathies to loved ones that have lost there loved ones may they rest in peace.

My therapist told me I should try to not read to much on this site that it is adding to my depression, I feel alone how can I not be with others that understand what my son and I are going through.

Sarah... Andy is in my prayers!! I am so sorry to hear about Andy's set back (Stay Strong Andy) I go on your/Andy's Web page all the time to read about your Family adventures..my heart is with you all.

Chris is playing Football he ran 117 yards last week on 13 carries he is a running back.He feels great,he looks great!! (((read on)))

Chris had his usual 3 month MRI on Oct 1st..the Doctor came in the exam room and said the tumor looked stable but would wait for the final report..Chris and I said WHAT TUMOR???? In all the reports it said stabile disease and he had a Pet scan that read negitive on June 30th. He proceeded to say there is a 1.5cm growth in the cavity were his surgery was and that it didnt show up until radiation was done his last radiation was 12/24/08, I have all the MRI reports and the March report did question a growth,so they called it stable disease,, you think they could have told us?? instead were told everything looks GREAT!! So I guess they didnt know for sure what it was until he went off treatment which was in June but still it was never pointed out to us until Oct 1st..

 (Its all about perfusion)

Now were told that PET scan of the Brain is not accurate sooo why did we even have one ??? I get an email on Oct 2nd from our Dr at Sloan,,we need to make an appointment the tumor has grown 2.5mm on each side I'm still trying to cope with the fact that there is a tumor there at all NOW the SOB has grown very little but still a difference from the last MRI in July.

Chris is off the study now which I was told was the most aggressive treament out there,ok so whats next?? I wont know until next week.. Chris asked me when we left the Doc's office on Thursday why cant they do another surgery?? He has no idea that I got news that its has grown..I want him to play his Football season out he has 5 more games he's 17,he has SAT"s on the 10th ,his 18th birthday on 10/17, Jet tickets for the 18th, Halloween and on 11/5 his 1 year anniversary from his surgery.. I am hoping that the doctor gives the ok I only want him to have 4 more weeks of peace before we have to start what ever there plan maybe.

I also had a giloma profile done at Duke in July his tumor is 40% resistant to Temodar..the Doctor there said there are other options for treatment so I may be heading South?? This week I will see what Sloan proposes.

Thanks for listening..Diana My son Chris dx GBM 11/5/08

RE: Sarah your not alone

by heart_and_soul on Sun Oct 04, 2009 12:00 AM

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Diana, YOU are not alone either. Man oh man. These poor kids. It totally sucks. Yes, I agree, Chris should do EVERYTHING he can enjoy. We're living in the moment here, in such a big way. Thai Food tonight!

Wishing you lots of good times, all the breaks, and good news very soon.

Love, Sarah

 

RE: Sarah your not alone

by Joan_l_3 on Sun Oct 04, 2009 12:00 AM

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Dear Sarah and Diana,

You ladies both deserve a medal for bravery and for just getting out of bed every day!  I so admire you both for your courage and the will to get on with things. Can there be anything worse than hearing a diagnosis of brain cancer in your child? I doubt it and I am so sorry this has happened to you both.

I just wanted you to know how inspiring you are to me and others who read here every day.  I hope for the best for each of your sons and pray for peace for both of you.

Godspeed.

Joan L 

RE: Sarah your not alone

by predisposed on Sun Oct 04, 2009 12:00 AM

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Can they remove the recurrence and then a vaccine?

Hoping for all the best for Chris, you and your family.  Praying for you too.

RE: Sarah your not alone

by Diana_G_2 on Sun Oct 04, 2009 12:00 AM

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Thank you, I have your questions on my list of questions for the Doctor,I wont know until Tuesday what they think the first steps should be.A second surgery would seem like the most likely soultion but the Doctor said something about memory on my sons right side of the Brain,it sounds like testing would need to be done first before they will consider it..I also reached out to the Radiologist she his looking at his scans from June,July and Oct tomorrow, Of course I keep imagining that there going to say its a mistake,,I can dream!!

RE: Sarah your not alone

by Diana_G_2 on Sun Oct 04, 2009 12:00 AM

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Joan you become a Warrior when its you Child ..if the day comes when they say they did all they could do then,,there are no words just thinking about it.

Thank you for your support! Best to you Diana

RE: Sarah your not alone

by Gbm_Wife on Sun Oct 04, 2009 12:00 AM

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Hi Sarah,

 

I am so sorry to hear about your son. It's bad enough it happens to adults.  I HATE when it happens to kids. My husband had the PET and MRS and they both came back positive.  He had surgery and they did not find GBM cells only necrosis.  He is almost at 6 years but his last surgery left his balance off. He said he had enough with all the tests and drs visits and he stopped treatment 21/2 years ago.  and he is doing well. Actually getting better with his balance but still had a long way to go.  We live in Bergen County NJ.  Do you live in NJ?

RE: Sarah your not alone

by heart_and_soul on Sun Oct 04, 2009 12:00 AM

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Nope, Maine. We're just grinding through this weekend. Tomorrow, 11:45, I think we'll feel either a little better or a lot worse. We'll meet with the doctor and figure out what the plan is. I'll let you know when I know.

Take care, everyone.

Sarah

RE: Sarah your not alone

by Diana_G_2 on Mon Oct 05, 2009 12:00 AM

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HI I live in Morris county,NJ would you mind telling me were your Husband went for treatment? Glad to hear your husband is hanging in there 6 years is good news!!Thank you Diana

my son Chris dx gbm 11/08

RE: Sarah your not alone

by Gbm_Wife on Mon Oct 05, 2009 12:00 AM

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