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prayers and good thoughts please . . .

gardenmom5

By gardenmom5,
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gardenmom5

gardenmom5

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for 1ds gf's family.  (they're fairly serious - and talking marriage.)

gf's mom was just diagnosed with brain cancer . .  it seems to be a particularly aggressive form, as she only started having (easily dismissed) symptoms two weeks ago. thursday  (I'm leaving details out) they took her to the ER. I'm hearing stuff 2ndhand from 1ds.  she's had surgery, they think they've gotten it all.   they're giving her maybe a year?

 

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Oh my word.  I am so sorry for her, and for her family and your family by the extension of love.  What a blow, and a sudden one.  

 

Mercy.

 

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Starr

Starr

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I'm so sorry. :grouphug:  :grouphug:  :grouphug: A small percentage can keep it at bay depending on where the tumor is located. We know of a friend of friend who has lived several years with a couple of surgeries and chemo. My younger db lived just over a year. Much sadness. Enjoy now, pray for more. 

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updated info: it's a glioblastoma. the most aggressive form. prognosis is 12 - 15 months (typical of the form).

My father's sister died from glioblastoma. It came on suddenly. She was diagnosed and given a prognosis of six weeks to six months. She died in six weeks. I'm sorry your ds's gf's family (and your family) will have to deal with this.

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gardenmom5

gardenmom5

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My father's sister died from glioblastoma. It came on suddenly. She was diagnosed and given a prognosis of six weeks to six months. She died in six weeks. I'm sorry your ds's gf's family (and your family) will have to deal with this.

 

 . . . the 12 months was from reading a wiki page.  when I learned how aggressive it was, my first thought was six months.  they did surgery, and I expect we'll know more next week. ds is relying upon gf for all information, and she's spending a lot of time at the hospital.  I did read the cells on this are really good at hiding, and even if they "get it all" - it has a high recurrence. they think they got it all - but the mass was really affecting her.  it was so sudden - but they did get her in the ER on thursday (testing all day), they diagnosed her on friday and did brain surgery on saturday.

1ds may still end up in school near her parents - it hasn't been decided as other one left on his list doesn't even accept applications until june 1 and doesn't notify those accepted until july. . . the one near her starts in august (it's much more expensive), but he's  keeping options open.  Now, I'm back to wondering if it would be better for him to be down there.

 

thank you everyone for your prayers for her and her family. I've had experience in the past where i could feel the strength of other's prayers for me.  She and her family need that strength now.

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J-rap

J-rap

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I'm so sorry.  That's such a tough thing to deal with.  My kids had a good friend whose mother was diagnosed with the same cancer.  She survived for another five years due to some really powerful and experimental treatment.  She was able to see her son married and her first grandchild born during that time.  

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gardenmom5

gardenmom5

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I'm so sorry.  That's such a tough thing to deal with.  My kids had a good friend whose mother was diagnosed with the same cancer.  She survived for another five years due to some really powerful and experimental treatment.  She was able to see her son married and her first grandchild born during that time.  

 

 

I don't suppose you know anymore?

 

gf has been doing a lot of reading - there's no way they could have gotten it all just based up on its shape. it has fingers/tendrils that go out in different directions.   they'll know a lot more after they get the pathologists report.

but having removed the mass - has brought her some improvement as it's not putting pressure upon other areas.  crossing the blood/brain barrier is apparently an obstacle for this one.  (don't understand it - just repeating the readings.)

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HTRMom

HTRMom

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Prayers. This happened to a friend of mine. She ended up getting married a couple months later so that her mother could attend. It's a very hard way to begin a marriage. Besides being miserable for everyone generally.

 

 

Sent from my iPhone using Tapatalk

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J-rap

J-rap

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I don't suppose you know anymore?

 

gf has been doing a lot of reading - there's no way they could have gotten it all just based up on its shape. it has fingers/tendrils that go out in different directions.   they'll know a lot more after they get the pathologists report.

but having removed the mass - has brought her some improvement as it's not putting pressure upon other areas.  crossing the blood/brain barrier is apparently an obstacle for this one.  (don't understand it - just repeating the readings.)

 

I might be able to find out more on their Caringbridge site.  I'll check on that!

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gardenmom5

gardenmom5

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Prayers. This happened to a friend of mine. She ended up getting married a couple months later so that her mother could attend. It's a very hard way to begin a marriage. Besides being miserable for everyone generally.

 

 

Sent from my iPhone using Tapatalk

 

hmmm - I kinda sorta hope they don't decide that.  he's in college and has another 2 - 2 1/2 years.  because he started at the local community college - he'll be transferring to one of two schools on opposite sides of the country. (we wont' know which one until july . . . talk about up in the air becasue one of the college's doesn't care about how inconvenient that is for the students . . . . :glare: ) one is an hour from her parents (the one to which we know he's been admitted. - but costs more. a lot more.)

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J-rap

J-rap

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I don't suppose you know anymore?

 

gf has been doing a lot of reading - there's no way they could have gotten it all just based up on its shape. it has fingers/tendrils that go out in different directions.   they'll know a lot more after they get the pathologists report.

but having removed the mass - has brought her some improvement as it's not putting pressure upon other areas.  crossing the blood/brain barrier is apparently an obstacle for this one.  (don't understand it - just repeating the readings.)

 

It looks like the the person I was referring to was a patient at the Robert Tisch Brain Tumor Clinic at Duke, from what I can tell from reading her Caringbridge site.  They had her on a regiment that was pretty intense but really prolonged her life.  

 

Very best wishes to you and your family.

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gardenmom5

gardenmom5

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It looks like the the person I was referring to was a patient at the Robert Tisch Brain Tumor Clinic at Duke, from what I can tell from reading her Caringbridge site.  They had her on a regiment that was pretty intense but really prolonged her life.  

 

Very best wishes to you and your family.

 

thanks.  I'm forwarding the information.  they've already talked about some major medical center in texas that their local hospital had association with

 

eta: apparently there is a genetic mutation that affects how treatment works.  if you have the mutation -forget it.  if you don't, you have a chance to prolong things.

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J-rap

J-rap

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thanks.  I'm forwarding the information.  they've already talked about some major medical center in texas that their local hospital had association with

 

eta: apparently there is a genetic mutation that affects how treatment works.  if you have the mutation -forget it.  if you don't, you have a chance to prolong things.

 

That's interesting about the gene.  I didn't realize that.

 

I have heard of a well-known cancer center in Texas.

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gardenmom5

gardenmom5

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That's interesting about the gene.  I didn't realize that.

 

I have heard of a well-known cancer center in Texas.

 

they've already talked about traveling to texas for treatment for her. they need more information about her case.  apparently their local hospital used to have some back-and-forth agreement, but they balked at the $50M yearly price-tag to keep it going.

do you know what city it is in? 

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J-rap

J-rap

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they've already talked about traveling to texas for treatment for her. they need more information about her case.  apparently their local hospital used to have some back-and-forth agreement, but they balked at the $50M yearly price-tag to keep it going.

do you know what city it is in? 

 

After a quick google search, I'm pretty sure it's the Anderson Cancer Center.

 

https://www.mdanderson.org

 

It looks like there are different locations.  

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gardenmom5

gardenmom5

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After a quick google search, I'm pretty sure it's the Anderson Cancer Center.

 

https://www.mdanderson.org

 

It looks like there are different locations.  

 

yeah - I found it too. thank you.  I also suggested they look into fred hutch - also on the list of the best.  and it's here . . . . a few years ago her mom actually turned down a job up here . . . .

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gardenmom5

gardenmom5

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I just got off the phone with 2dd. . . sad she is so far away.

 

I gave her more details on gf/fddil's mother.  she has heard of a treatment for glioblastoma where they inject a virus? into the tumor, and it attacks the tumor.  she wasn't sure of all the particulars (it's been awhile and she would have to go look it up) but she was positive it was glioblastoma and it had good results for quality and/of  prolonged life.

so - I passed that on and we'll see what the future brings.

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