Husband With Glioblastoma Multiforme Stage 4

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Husband With Glioblastoma Multiforme Stage 4

by Careccb on Tue Sep 05, 2006 12:00 AM

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My husband was recently diagnosed with stage 4 GBM. He is 45 years old and is the most amazing father and husband. His short term memory is gone and his long term is fading as well. His left eyelid is completely shut because the tumor has paralyzed the nerves that control it. He is now going through radiation and chemo (temodar) as well as Velcade(experimental drug already approved by the FDA for blood cancer) I am so scared for him and for our three children. Anyone know how to explain to a toddler that Daddy is really sick?

Hope

by Shannond on Tue Sep 05, 2006 12:00 AM

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There are stories of hope out there. I found encouragement from brainy_chick and others in the short time I've been on this board. She was dx in 03 and still proving the dr's wrong. I also read "Surviving Terminal Cancer" by Ben Williams. Great informational read. However I can't help but wonder if his original "mis-diagnosis" was actually an accurate one when it indicated that there were more than 1 type of cancer cell in his tumor (not exclusively GBM), hence his extraordinarily long survival? I don't think the drug "cocktail" approach is a bad one, nor taking 20mg of melatonin, etc. Some great ideas when there doesn't seem to be much hope. My father was dx in July 06 and sadly, he passed away 11 days ago. What began as tingling in his palm one day resulted in complete left side paralysis a week later. I wish I had taken more videos and photos in the final weeks, but we didn't know they were the final weeks. I thought we had 6 mo. to 2 years! My kids are 5 and almost 3. Cherish every minute, every hour, every day like it is your last. Say everything you want to say. I caught myself avoiding picture-taking and certain conversations, because I didn't want him to think we had given in to the idea that he was terminal. Build memories and stay strong. I pray that you have help with your children during this trying time. Talk to him about his faith. It helped my father to know that because he was Saved, he didn't have to worry about what would happen if he left this world.

Kids

by Terryvancouver on Wed Sep 06, 2006 12:00 AM

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I have two children and was recently diagnosed in June. I talked to a counsellor who specializes in this area about what to do with telling my children. She said they will follow your lead. If you are OK then they are too. We have told the kids, each on terms that are appropriate for their ages (they are not toddlers anymore). Our approach is let them know they can ask whatever questions they might have and invite them to ask from time to time. We are always open with them. We also share some of the treatment information with them and explain why Dad's hair is falling out (usually with humour) or why I don't always join them the dinner table. Bottom line - we're not hiding anything from them or showing them denial. The result has been... they are going about life being their happy selves except I get a few more hugs and massages than normal. It's all good. And it goes without saying - cherish the time - it tastes better now!

Gbm dx

by Gagbm on Wed Sep 06, 2006 12:00 AM

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Carrie, you did not mention if your husband has had surgery for his tumor and where he is being treated. My wife was diagnosed June 2005 w/GBM 7 weeks after giving birth to our son. She was initially given 12 months to live. She celebrated the passing of that 12 months by running a triathlon and remains cancer free today. I very strongly recommend you seek opinions on your husband's care from one of the major brain tumor centers such as Duke, UCSF, or MD Anderson. Brain tumor treatment is very highly specialized and results do vary widely between doctors and hospitals. In addition, these centers have social workers who specialize in helping the children of parents w/brain tumors. My wife couldn't assemble a sandwich after her surgery, but she did recover and is working full-time, exercising and chasing our toddler around the house. Good luck

How to Explain to Toddler

by Sleepingonthejob on Wed Sep 06, 2006 12:00 AM

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Hi Carrie. I too have a husband (41 years old) with Glioblastoma and a 23 month old. There was a time when we didn't think we'd have our Chloe. My husband was diagnosed 8 years ago with a low grade inoperable brain tumor. The tumor progressed until in September 2005, it turned to a Glioblastoma. Now, Eric is bed ridden and cannot walk. He has left hemiparesis due to the tumor. He lost his left parepheral vision and he's complaining more and more about his blurred vision. His short term memory had been affected after the radiation treatment in 2002. Amazingly, despite having chemotherapy in 2002, we were able to conceive and Chloe was born in 2004. We also have a daughter in her junior year at the University of Connecticut. Now that Erica's gone back to school, there are days when I don't have time even for a shower! I don't know how old your toddler is, but I've found that our daughter has accepted her daddy's condition very well. He's been in his condition since May of this year so she's seen him when he was fully active and able to do more. Now, she wants to help with everything from pushing his wheelchair to his personal hygiene (for obvious reasons, I don't let her help with that). She discovered she could climb his hospital bedrail and often, I will find her laying with him just watching tv. Although he can no longer play with her, they do watch her videos together and he will sing her songs. I would love it if he'd get well and be able to play with her more. But these activities they do together still allow them time together. Actually, when she's laying with him, she does not want to be bothered by anyone! Whatever changes happen, let your kids be a part of them. I don't mean you need to explain every aspect of the illness, but if you explain that their daddy is ill and needs help to get better, I think you'll find they'll understand. Let them know that it's ok for them to be scared and sad. If your husband needs adaptive equipment like mine does, explain and show what they are for so the kids can understand. The last couple of months, our house has been turned into a makeshift hospital. Chloe likes to push her daddy in his wheelchair, but when it's sitting there unused, she does not play with it. The same for most of his other equipment. It's hard trying to get him to all his appointments and take Chloe too. Luckily, on the really hard ones ( like the MRI appointments where I need to be in the room with Eric so I can transfer him from the wheelchair to the stretcher and back), we have family and friends who can and will take her to work with them. I just don't want to take advantage of their generosity. Hang in there and give us a yell when you need to. I think you'll find this board is a great source for information and support. Candy

Thank You

by Careccb on Wed Sep 06, 2006 12:00 AM

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Thank you so much for your thoughts, ideas, encouragement and prayers. I am only too sorry to hear you lost your father to this evil monster. I will pray to God to send his comfort to you and your family. We have been living one day at a time and loving more than ever. I don't understand why this is happening but I know how blessed I am to have Rick and my children no matter what. Take care and God Bless.

Kids---thanks

by Careccb on Wed Sep 06, 2006 12:00 AM

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Thank you for taking the time to respond to my message. I appreciate your thoughts and feelings about the children. I think you are amazing to be in your situation and still be kind enough to think about someone else. I also think your right about the kids. We have been very honest about Daddy being sick, we just haven't explained that he may not always be here. I suppose we aren't even ready to except defeat yet. Keep fighting and take care. God Bless, Carrie

Thank You For Your Message of Hope

by Careccb on Wed Sep 06, 2006 12:00 AM

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My husband had a biopsy but that is all. We have been at Thomas Jefferson University Hospital in Philadelphia for treatment. He was in the hospital for some time, now we are going daily as you know for radiation. You wife is an incredible miracle. You are truly blessed. We have just discover MD Anderson and we have been checking into Duke. Did your wife have have surgery? Thanks Again, Carrie

Thank You so Much

by Careccb on Wed Sep 06, 2006 12:00 AM

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Hi Candy, I am so sorry to hear you and your family are living with this monster too. However, you must feel so blessed to have Chloe. Sounds like you have all been through so much already. I am glad to hear that Chloe is doing so well with her Daddy. We also have a daughter in college, Ali, a daughter going just starting the nineth grade, Lauren and our little boy Jake who is turning three in November. They are all dealing with this in different ways. Ali our 19yr old became a grown-up overnight. She is dealing with things and doing things she should never have to do. Now that she has gone back to school, she feels so much guilt, but I keep telling her that her Daddy worked his entire life for his children to go to college. She knows that but it is still hard. Lauren, well I'm sure you remember 9th grade and 15 years old. Could she possibly have anymore to deal with and then there is our little man Jake. Jake is so special. We weren't suppose to have him but he was God's little blessing. He is so full of life and loves everyday to the fullest. He knows Daddy is sick he just doesn't know why daddy is always sleeping or why he can't throw the ball when he wants to. It just breaks my heart to see my children and my husband hurting so much and I can't do much to make it any better. Your in my thoughts and prayers, Carrie

Gbm dx

by Gagbm on Thu Sep 07, 2006 12:00 AM

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Carrie, Durham is not a very far drive from Philadelphia and the trip would be well worth it. Duke will also review your husband's scans and medical records and let you know over the phone whether or not they feel they have something different to offer than what you are getting at home. If nothing else, it will reaffirm your current treatment plan. There are a lot of places online you can find advice and assistance. I strongly recommend you join the email listserve on the website of the musella foundation. It is a large community with a lot of people who have 'been there and done that' and can offer advice and assistance on a wide range of topics. As for Duke, if you page the director of the Brain Tumor Center, Dr. Henry Friedman, he will call you back promptly - often late at night or early in the morning. You can find his pager number on the website of David Bailey - a musician w/GBM treated at Duke who just passed his 10-year diagnosis anniversary. Good luck!
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