Devastating Diagnosis After Second Surgery

Okay, Marilyn had her second surgery in three months. The new  tumor had almost doubled in size and was pretty deep. The "fingers" are everywhere even growing in the fluid. Her NO said that we will continue to fight but i have to tell you he seemed almost defeated.

Tomorrow a.m. yet another MRI . We will regroup at that point and figure out the next step. Thank you for all of the support through prayer, messages etc.

We will keep you posted...Adonna & Wendy

Oh god, dearies, I am so sorry. So so sorry. Do keep the faith but more than anything, let the love flow. Make sure she is always comfortable. Does she have children? My heart goes out to you all. : (

Sarah

mother of Andy dx gbm/pnet Jan. 09

So sorry to hear that you didn't get better news.  Try to hang in there.  WIshing you peace and strength.

Hi Sarah,

She has 5 children and 11 grandkids. Am I over dramatizing the situation?? It just seems that with everything that we have read, her case seems worse. Maybe we are too close to be objective? I can`t think clearly and we still have not seen her NO. Has your son had a dx this bad at any point??

Sorry, we are flailing about today from lack of sleep and stress. If your out there we could sure use some input!!

Hello honey.

No, you are not being melodramatic. If I were diagnosed with a GBM, I'd want a sister like you who understood how serious this is. Your sister's case is pretty intense. Some people DON'T have the tumor grow back like that. They seem to perk right up and get through chemo and all. Then they say it's all because they have such a good attitude or because they prayed harder or something which (sorry to say) burns my toast because I don't think we have that much control. This isn't a test of character. Tumors happen to dogs and kids and trees too. It's just biology. All we can control is how we choose to live each day given the shituation we're handed. Live with grace, forgiveness, compassion, and love. And do it one minute at a time.

Keep breathing ok? She needs you.

Much love,

Sarah

p.s. And yes Andy's dx was that bad. It was huge on the left side, and also everywhere, with the fingers and roots. His 'midline' was pressed way over to the right. They could only remove 30%. Then it grew right back. I think of it as a very VERY bad weed in the garden... and I know how hard those are to get rid of. Then we found out it was a rare double cancer of GBM + PNET. Now it is growing again, in four places. His odds are just plain terrible. : (

So sorry to hear your news.  Hugs to you and yours. I'm with Sarah on this one...let the love flow!  I'm on parent #2 with GBM and I'll never look back on all the time that I had with my dad....just loving him and I'm soaking up every minute that I am having with my mom.

God bless~

Cris

Hi Sarah,

Meeting with her NO...three weeks with no further treatment and perhaps three months with Temodar and Avastin. I can`t even go into my sisters room...don`t want to upset her. He said that the three months will be really bad..seizures, paralysis etc. Do we go for it and do further treatment?  Should we ask the NO to be totally honest with her??  He also told us that it would be very reasonable..choosing no further treatment.

You all have always expressed that you can`t give up hope. I have to say that we are feeling really hopeless right this minute. I am not expecting you to fix this or give us answers..it`s just that the ONLY reasonable suggestions or ideas or HOPE have come from the folks on this blog.

Thanks for letting me vent :(

On Oct 28, 2009 11:08 PM gbm4daughter wrote:

So sorry to hear your news.  Hugs to you and yours. I'm with Sarah on this one...let the love flow!  I'm on parent #2 with GBM and I'll never look back on all the time that I had with my dad....just loving him and I'm soaking up every minute that I am having with my mom.

God bless~

Cris

 

gbm4daughter - you are on parent #2 with this disgusting disease?  Oh my gosh.....I am so sorry. Hard enough doing it once!

Passionfish,

It's a hell of a choice. I think I would consult with the hospice caregivers in your area and find people who are very well trained in brain tumors. Look at the website www.brainhospice.com . It gives a timeline. If she is within 6 months, she qualifies for hospice care and that iS NOT about giving up, it's about dignity and comfort and quality of life every day that she has left. Even Avastin can be given for palliative care.

I am not one for false hope. I hope we can make the right decisions. I hope I can be fully honest and fully present. If a miracle happens, great. But in the meantime, I'm focused on the here and now. What do I need to do to make sure there is minimal suffering in those I love so dearly... my sons, my parents, especially.

Prayers for peace. Knowing we did all we could do.

xo Sarah

On Oct 29, 2009 4:15 AM heart_and_soul wrote:

Passionfish,

It's a hell of a choice. I think I would consult with the hospice caregivers in your area and find people who are very well trained in brain tumors. Look at the website www.brainhospice.com "" target="_blank" rel="nofollow">http://www.brainhospice.com " target="_blank" rel="nofollow">www.brainhospice.com . It gives a timeline. If she is within 6 months, she qualifies for hospice care and that iS NOT about giving up, it's about dignity and comfort and quality of life every day that she has left. Even Avastin can be given for palliative care.

I am not one for false hope. I hope we can make the right decisions. I hope I can be fully honest and fully present. If a miracle happens, great. But in the meantime, I'm focused on the here and now. What do I need to do to make sure there is minimal suffering in those I love so dearly... my sons, my parents, especially.

Prayers for peace. Knowing we did all we could do.

xo Sarah

what wonderful advice! Doctors tend to give false hope and it is hard to know what to do! there still is so much suffering even on Hospice. My goal is to limit the suffering. Putting down an animal is more peaceful than the pain my husband was subjected to. I promised him a pain free death, as Hospice did.. it wasnt!