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I would like to hear from Spouses who are supporting their partner with GBM

meaganandshane
Posts: 10
Joined: Feb 2012

Gday from Australia,

My husband (34 years of age) was originally diagnosed with stage 3 Anaplastic Oligod astrocytoma on April 5th 2011. He had surgery on the 8th April, they removed 7cm by 5cm from the right tempral to the occipital lobe. The neurosurgeon could not tell if she fully excised the tumor. 1 week later they diagnosed him with stage 3 brain cancer. 3 weeks after surgery my husband started 6 weeks of full brain radiation. Whilst having radiation they recommended an MRI, the MRI come back not very favourably the tumor had grown back to it's original size. They stared my husband on chemo (Temodal - 400mg 5 days on, 3 weeks off) on top of radiation. They upgraded him to stage 4 GBM as it was growing so aggressively. 6 weeks later we had another MRI, this was a bit more favourably for us as the tumor had now stopped growing. My husband is on round 9 of chemo and the tumor is still stablized with small changes. He is doing remarkably well. He gets quite tired but on the plus side of things he doesn't have as many seizures as he used to (he is taking keppra 2000mg a day). If you were to look at him you would not think that he had this horrible disease. My husband has a very positive outlook even though we know that their is no cure. We hope and pray for this everyday. My husband has written a song to me, he wrote this to me after he was diagnosed. In doing this I feel that he has given me a part of him he has touched many hearts I hope to share our story with you. I hope all of your loved ones are doing well. I hope to read positive outcomes from you all. xoxoxo

You can view my husbands song on youtube called Shane Latham Take my hand it has pictures of our family and we have also posted a MRI of his brain tumor.

Here is the link - http://www.youtube.com/watch?v=_MvsFqoRPZc&context=C3643189ADOEgsToPDskIammcbqUkukHoxO-LaLzRv

connsteele
Posts: 232
Joined: May 2011

I just went to youtube and listened to your husband's song. I am crying as I write this. What a wonderful and beautiful tribute to you and the strength of your marriage. With such loving support that he feels from you, I am sure the future is bright.

Our son is by nature very quiet, and introverted, and hasn't said a whole lot about having to rely on us for his care. I'd like to think this song could be coming from him to us.

Thank your husband for sharing this.

Connie

meaganandshane
Posts: 10
Joined: Feb 2012

Hey Connie,

Thank you so much for your beautiful words. Shane is normally very shy as well and normally wouldn't put his work on a global forum but after singing this song to me and knowing how much it meant to me and how much it touched my heart I think he wanted to touch other hearts as well. I am glad you liked the song.

I am sure your Son is very appreciative of all the things that you do for him, I think males have a hard time espressing themselves and that is why Shane chose to speak to me through his song.

Shane is doing ok at the moment we have 5 weeks until our next MRI we are hoping that it comes back stable. We always fear the MRI results, we get very worked up when we sit with oncologist and wait for the news.

I hope that your son is doing well.

I guess with cancer we take things day by day. I hope one day we don't have to think like this and that someone comes up with a cure in saying this I hope all diseases get a cure as no-one should be going through what we are going through let alone the people who have the diseases.

My prays go out to you and your family.

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Aloha from Hawai'i.

How are you and your husband doing?

My husband is 34 years and was diagnosed with DIPG (diffuse intrinsic pontine glioma) in January 2011. Between Feb and Apr of last year, he completed a course of 28 RT. Because it is within his brain stem, surgery is out, and there is also no cure. We are fortunate that he is stable for now, with his next MRI scheduled in less than a month.

I'll be honest and tell you I can't bring myself to listen to your husband's song. I imagine it would just rip me to shreds.

Anyhow, I just wanted to let you know that I was thinking of you two.

Leslie

meaganandshane
Posts: 10
Joined: Feb 2012

Hi Leslie,

My husband is not feeling so great at the moment, he has just finished his 10th round of chemo and whilst having chemo he got a really bad cold. He has been in bed for the last two days, he is feeling a little bit better today though. It is very hard on me as I would love to look after Shane full time but I unfortunatly have to work as we have a mortgage to pay off. I am fortunate that we have great support around us that can help out whilst I am at work. Shane used to be a Truck Driver but in Australia you have to wait 2 years after a seizure before you can drive again, Shane's last seizure was in January this year so we are positivly looking fowards to January 2014.

We have our next MRI at the end of this month and we find out the results on the 10th April. We are sure that the results are going to be stable.

I have brought Shane a book to read which is called The Power written by Rhonda Byrne (she is the author of The Secret)he is feeling more confident and happier since reading this book. I will recommend this novel to everyone. I am half way through the book and I think it is fabulous as well.

I have never heard of DIPG before. I am going to look this tumor up after I have finished writing this note to you.

Shane had 30 RT's he started chemo while he was doing radiation as his tumor had grown back from surgery. Is your husband taking chemo?

I am so glad that your husbands tumor is stable, I hope it continues to be stable.

I hope you and your husband are doing ok. It is such a hard journey that we are all on.

Look after yourself.

Meagan

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Hi, Meagan. Well, it's the 11th here...how did Shane's MRI go? I'm keeping my fingers crossed that it went as well as you were expecting.

My husband just had his most recent MRI and meets with his doctors in Texas next week to review them. Holding my breath until then.

No chemo for Clint. The way I understand it, chemo is kind of a last resort with DIPG, and it doesn't seem to help a lot. So, instead of the wait and see after it was diagnosed, we did radiation as soon as we could. If they notice it starts to grow later, then we'll discuss chemo for then. We are so fortunate that his only symptoms were headaches. All of the neurologists and oncologists were pleasantly surprised that it was caught so early- no seizures or balance or swallowing problems. He does have some slight double vision- only for things at extreme distances thankfully.

Keeping you and Shane in my thoughts.

Leslie

connsteele
Posts: 232
Joined: May 2011

Hi,
Hope things are going well for you.

I don't know if this email list serve would be helpful, but I subscribe to it:

btcaregivers@braintrust.org

I should say that many who are active on the list are going through some hard, and challenging times, and their emails reflect that. I value it because it is one place where I can really vent and relate to others going through the same thing. So, it may not be suitable for your situation.

Hugs to you,
Connie
m/o David, age 34, AA4

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Connie,
Thanks for that. I hadn't found that group before. They even have an adult brain stem glioma group- exactly what I'd been wanting to find.

Much aloha,
Leslie

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