just stunned!

[ennis]

my grandson is aged 20 and has just had an operation to remove a brain tumour.he has recovered well from the operation and has recovered feeling in his arm and is walking much better.however they say that the tumour which they couldnt remove all of is like a spiders webb and is grade 4.I believe this is really bad. he is to have radiotherapy and chemo.can anyone give me some hope.

[cmcd]

Ennis, there is always HOPE. New treatments and studies are coming out daily. Don't however look at statistics. The computer is a wonderful tool but sometimes you can read too much information. Your grandson is young and he definately has that on his side. I can not give any medical advise other than to listen and if you are not comfortable with the information you are given find someone els. This is a wonderful forum to exercise flustration, get information and most of all have the support needed to cope with this ugly disease.

Prayers are with you and your family.

[ennis]

thank you for your prayers and good wishes.i have just heard that the drs told my grandson that they would not give him the radiotherapy and chemo if they thought it was useless.he is remaining positive and thinking of planning a holiday after his treatment.

[brainman]

ennis, I am very sorry about your grandson's advanced and aggressive cancer . May I ask how old he is? The reason I ask is that is he is a child, his chances are somewhat better than if he is an adult.

However you slice it, however you look at it, this is bad news . While cmdc is right that there is always hope. I had a much lower grade of brain cancer in 1992 that recurred in 2005 but I am still her. My mother who had a grade IV died within 2 months of her diagnosis. I do know of members here who have had loved ones that lived for many months. I have even heard of one one is still alive many years later.

My advice to you is to make the most of every day you still have with him. Make this Christmas especially wonderful for him.

You and your grandson are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

[Gillette]

God bless you and your family, how sorry I am to hear your grandsons story, and at such an early age- live every day, and love and laugh when you can. One on the forum signs- where there is life, there is hope- I believe it too. My prayers are with you.
_________________
Kathy: still loving Ben, as he rests with God.

[ennis]

once again thank you for you prayers.I am ashamed to say this but I am doubting that there is a god.maybe this is a normal reaction I dont know.I am really finding this hard tho I know it is early days.I seem to be crying all the time and am trying to do ordinary everyday things as i think maybe if i keep busy it will help.I have got to get a grip on myself for my daughters sake.marc, my grandson, is 20 years old(he will be 21 at xmas).before this happened 2 weeks ago he went to the gym everyday and ate healthy, and is a good boy.i feel so angry as well i am in such a turmoil.

[Gillette]

You are fine- you have to adjust to this HUGE shock. You are normal- Cancer is not. It is not unusual for you (and all those around you) to question EVERYTHING - cancer changes every aspect of each of our lifes- even those who are not close; are not family. There are no answers to getting through the cancer process, no one size fits all, and no magic. You have to hold each loved one close- as long as you can, and pray. To wonder why a benevolent Lord would 'let' something like this happen, and to doubt His existance, is completely understandable. This - cancer - is the most unfair and indescriminate evil there is. My heart aches for you and for your family. Seek out an ear- someone close, or a professional support system. You and your family should get any help you can, reach out to the medical professionals involved. And remember this pain is new- the road of cancer is a trip, a journey- no matter how unwanted it is- and time will help the process of dealing with it all. I pray for you and for your family, and wish i could hug you myself. God Bless, and keep us posted.
_________________
Kathy: still loving Ben, as he rests with God.

[ennis]

I had a surprise today.I week after his brain operation my lovely granson came to see me.he looked so big and strong so hard to believe that terrible thing is there.he starts his radiation and chemo next week for six weeks.I was upset when he had gone but held back the tears when he was here.his mum and dad were taking him to the supermarket as he wants to get back to his healthy eating and working out.he proudly showed me his scar .I do hope the chemo etc gives him a good amount of time.he and his parents are being very strong and positive I am so very proud of them.I really find it helpfull to put my feelings on this site.thank you everyone who takes the time to reply

[brainman]

It does not surprise any of us who know brain cancer first hand that your grandson came to see you so soon after surgery. As unbelievably as the general public might think it is, most of us recover very well and very quickly after our brain surgery .

I too hope that the chemo and radiation can help. You does have youth and overall good health on his side.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

[cmcd]

Ennis, My Brother-in-law was diagnosised with GBM IV in May 2007. We were all devastated. I read that the life expectancy was 18-24 months. He had his first seizure in Feb 2007. He is going into his 21st month according to Duke. He has a little set back but HOPE is still there. He is 43 years old. I now believe that the time we have with him may be limited but he wants us to treat him as if he will always be here. My sister and her husband have been through so much these last 21 months until I am inspired by their resilence. He is responsible for his 83 year old Mother who just broke her hip. Life is too short. Love and live like today is the last day. Enjoy each and every minute but don't make him feel like he will be gone tomorrow. I only know this because of what my Brother-in-law has told me. I appreciate that your grandson came to see you. That is respect and much love to you.

My prayers and HOPE are with everyone.

[ennis]

I think that today I feel a tiny bit more calm and a little bit more positive.I feel like trying to fight back but then I feel despondent.I have started to do some research on the subject,which I suppose many others have before me, but I have to feel like I am doing something.I have read that the success rate in america is higher than here in the uk. does anyone have any theories on that? Is it like so many other things in this life and down to money?I am having to be vey strong for my youngest daughter(my grandsons aunt,although they are very close in age she was a late baby and there are only 8 weeks between her and marc,so he is more like a brother than a nephew).she has ben home from university to be with the family but today we convinced her that she should go back and be thankful for her opportunities.her uni is only 45 minutes away on the train so she can soon be home again,I do hope I have done the right thing as I hate the thought of her being away but she has some good friends and young people neve cease to amaze me with thei thoughtfulness and compassion.Marc continues to seem ok,he is spending a lot of time with his friends and I think maybe he finds it easier to talk to them than his parents at the moment.thank you for your thoughts and prayers and my thoughts ae with all of you who ae on this terrible journey.

[ksplat]

Dear Ennis
I am very sorry to hear about Marc's BT. You have already been blessed with support & advice from other members here, I wanted to let you know you are all in my thoughts & prayers. So pleased to hear Marc's parents are remaining positive through this upheaval & I'm sure Marc will be well prepared for his next line of treatment.
This illness is so unfair for our loved ones & although the journey may be challenging at times I'm certain with the love you share among you, God will be with you always, watching over you.
The Cancer is a product of the modern times we live & not a result of anything God has done. God is a loving God not a punishing God so as I said he will be travelling with you all on this "road of life".
So pleased to hear Marc dropped by for a visit. He sounds like a wonderful young man & I pray his treatment will prove successful for him. Especially good that he is being watchful over his food & fitness regime.
You have every right to be feeling stunned by this diagnosis of Cancer. It is a battle none of us would have ever expected to land in our laps. All of us here have been through or are travelling similar paths. I am glad you found our wonderful forum.
Keep us posted on any updates from Marc.
The research you are undertaking will be a great way to channel your anger, sadness & frustration. Don't overload though as there is always information you find that isn't totally reliable. Come to us here for any questions/clarification.
Sending my love & hugs to you.
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

[KelJ]

Hi Ennis. So sorry to hear about your Grandson's diagnosis. And I completely understand what you're going through as my wife was diagnosed with a grade 4 GMB last year (last June to be exact). But I do want to say that although it's been a roller-coaster ride that I wouldn't wish on anyone, we're sitting at 19 months post-diagnosis with a stable tumour that is responding well to chemo. Our story (such as it is) is here http://www.cancerforums.net/about6581-0-asc-0.html and you can see that although things didn't go well for us at first, they've certainly improved. And this is without having any of the tumour removed!!

Hope comes in many sizes and shapes and it sounds like your grandson is going into this both fit and healthy. Statistics are simply numbers... I refuse to pay attention to them. We just chose to enjoy each day together regardless of whether we're sitting around at home, chasing our son, or going to yet another doctors appointment.

This forum is a great resource as others have said. Use it for support, questions, or just to blow off steam!

Thinking of both you and your grandson,

Kel

[ennis]

hi kel.thank you for your comments.you have given me hope when I read your story,I am busy researching all the time,although non of the decision making is up to me my daughter is gratefull for what I can find.marc is at the very beginning of this journey and it is all very new.he is still waiting to start his radiotherapy and chemo(hope it will be monday),but there always seems to be something else to be done first.today he has had some of his sperm frozen,and I think this is a really positive sign because he is not married or in a relationship and if they are doing this it suggests to me there may be some hope for a longer prognosis than we first thought. I tell my daughter that we only have one drs opinion so far,and another one may think differently.
marc will be 21 on 29th december and we are planning a big party for all the family and friends;I am so looking forward to it.
after new year marc is going to try the johanna budwig diet,so he is ivery positive at the moment.I will remember you and your family in my prayers
_________________
live in hope
my story http://cancerforums.net/viewtopic.php?t=11140

[brainman]

Ennis, I am glad to hear that Marc is remaining positive. Sometimes that is the thing I most struggle with.

It is also good that you are doing the research. Your daughter and Marc might still be too overwhelmed by his diagnosis to do much for himself. I suggest that you go to a hospital that has a medical library with a librarian and as the librarian to help you find some easier but still comprehendible and current information on brain cancers. Will you are not the one making the decisions, you certainly can advise Marc based on the information you find.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54