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Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.

 
Saint Kitty

User ID: 77337151
United States
03/12/2019 01:32 AM

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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
I am so sorry this happened to your daughter OP.

And I am so sorry for the rude responses from some troll types or just unkind people. I can't even begin to imagine how difficult it would be to have your child get a diagnosis like this.

There is nothing wrong with turning toward conventional medicine to help your daughter treat this and also using some alternative treatments too.

The most powerful help you can get for your daughter is prayer so I will definitely be keeping her in mine. You are both very strong and an inspiration to others, God bless you both.
Anonymous Coward
User ID: 75993659
Canada
03/12/2019 01:34 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
(Many thanks for allowing this thus far, I should have sought approval)
Hello friends. I have been lurking here for ages, not much of a poster but due to circumstance I find myself in survival mode willing to try anything. I don't facebook or any of that, so really this is one of my only social outlets to try.

My 8 year old daughter Emma, has been diagnosed with Diffuse Intrinsic pontine glioma. Its a rare brain cancer which grows on the brain stem and it is inoperable. This struck her out of nowhere, we had recently been told by an optometrist and audiologist that her symptoms where due to hearing and vision loss, nothing to worry about. Glasses and hearing aids. Never trust free health care!!

Emma has been in the hospital for 2 weeks and has begun her 33 radiation treatments, which is the only treatment available due to the tumors location. She was very close to dying, but has regained some of her motor skills, and is now eating soft foods. This in itself is miraculous!!

I also have been giving her CBD oils... as I have read many scientific papers on prepping tumors for radiation with cannaboids causing a greater reduction in the tumors, as well as the anti inflammatory, anti fungal and many other positive aspects to it. I will also be preparing foods at home using honey, pineapple, carrot and other known super foods to give her every possible fighting chance.
I have not given up hope despite the prognosis, how could I? There are several clinical trials coming up which she may qualify for as well, it truely seems alot of cancer cures may be on the horizon, if they can get past the corporate interests and all that. ONC201 and ONC206 look very promising for this H3 K27M cancer in particular.

Im reaching out here on a gofundme, knowing how greedy I sound. Knowing I have seen this sort of thing before and ignored it, so please if you ignore it, do not feel bad, perhaps thats how karma works...
If anyone reading this has any information, or leads, or knowledge which may help, anything please share. I will be monitoring this thread, but probably not for a day or so as I've been up for a very long time.
Regardless of the outcome I want to thank you for reading our story.

[link to www.gofundme.com (secure)]
 Quoting: Serowin


Go research the ketogenic diet as an adjunct with conventional treatments.

It has some support with brain tumor stabilization and shrinkage.
Anonymous Coward
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03/12/2019 01:34 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
i saw something here a few days ago about Measels being used to attack cancer. i think there is a thread here about it. God Bless!
Serowin  (OP)

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03/12/2019 01:34 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
Im really having a hard time sleeping so how about I entertain you with conspiracy stories from the cancer clinic in canada.

When we first went into the emergency ward we were seated in the common area and then Emma was rushed into the CT scan which showed a "mass" near her brainstem. We saw the scans and agreed to immediately rush her into intensive care. At this point it was like she was very drunk. We cried.

She was given a dex steroid at high dose to reduce the swelling, the dr's said her tumor had ruptured. We met with the pediatric oncologist and pediatric radiologist the next day and they said they were not sure they could help, but were willing to go forth with radiation treatments starting in 2 days.
It was a wednesday when we first went to the cancer clinic and they made a mask for her, so she wouldn't move under the ....beam.
Thursday she had her first radiation treatment, this is also the day I began CBD treatments, and I also found a nice little underground cannabis market where I got my hand on some rick simpson oil.
Friday another treatment, as well as rso prior to rads and cbd's afterwards. Then another Dr's meeting. Only this time there was social workers, specialists of this sort and that sort, and nurses.
Thats where it got interesting....stay tuned.
Anonymous Coward
User ID: 76112273
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03/12/2019 01:35 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
I also have been giving her CBD oils... as I have read many scientific papers on prepping tumors for radiation with cannaboids causing a greater reduction in the tumors, as well as the anti inflammatory, anti fungal and many other positive aspects to it.
 Quoting: Serowin


Good on you for doing your research!

:greenkarma:
Anonymous Coward
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03/12/2019 01:36 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
I see my question was removed.

The gofundme page and the flag for OP says the location is Canada. Hamilton, Ontario on the gofundme.

I'm just asking why you need donations? Isn't her medical care free there?
Anonymous Coward
User ID: 75993659
Canada
03/12/2019 01:36 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
[link to med.stanford.edu (secure)]

Glioma's growth halted by absence of protein. This in mice, but lack of this protein caused the cancer to not grow: neuroligin-3

[link to academic.oup.com (secure)]

Curcumin and I think they're talking about chemo helped in viro.

You need to research the studies and anti cancer supplements.
 Quoting: Sungaze_At_Dawn


Yeah except what works in rodents and other herbivores does not translate to humans majority of the time.
Anonymous Coward
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03/12/2019 01:38 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
(Many thanks for allowing this thus far, I should have sought approval)
Hello friends. I have been lurking here for ages, not much of a poster but due to circumstance I find myself in survival mode willing to try anything. I don't facebook or any of that, so really this is one of my only social outlets to try.

My 8 year old daughter Emma, has been diagnosed with Diffuse Intrinsic pontine glioma. Its a rare brain cancer which grows on the brain stem and it is inoperable. This struck her out of nowhere, we had recently been told by an optometrist and audiologist that her symptoms where due to hearing and vision loss, nothing to worry about. Glasses and hearing aids. Never trust free health care!!

Emma has been in the hospital for 2 weeks and has begun her 33 radiation treatments, which is the only treatment available due to the tumors location. She was very close to dying, but has regained some of her motor skills, and is now eating soft foods. This in itself is miraculous!!

I also have been giving her CBD oils... as I have read many scientific papers on prepping tumors for radiation with cannaboids causing a greater reduction in the tumors, as well as the anti inflammatory, anti fungal and many other positive aspects to it. I will also be preparing foods at home using honey, pineapple, carrot and other known super foods to give her every possible fighting chance.
I have not given up hope despite the prognosis, how could I? There are several clinical trials coming up which she may qualify for as well, it truely seems alot of cancer cures may be on the horizon, if they can get past the corporate interests and all that. ONC201 and ONC206 look very promising for this H3 K27M cancer in particular.

Im reaching out here on a gofundme, knowing how greedy I sound. Knowing I have seen this sort of thing before and ignored it, so please if you ignore it, do not feel bad, perhaps thats how karma works...
If anyone reading this has any information, or leads, or knowledge which may help, anything please share. I will be monitoring this thread, but probably not for a day or so as I've been up for a very long time.
Regardless of the outcome I want to thank you for reading our story.

[link to www.gofundme.com (secure)]
 Quoting: Serowin


Go research the ketogenic diet as an adjunct with conventional treatments.

It has some support with brain tumor stabilization and shrinkage.
 Quoting: Anonymous Coward 75993659




Anonymous Coward
User ID: 74792325
United States
03/12/2019 01:42 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
See about virothreapy at Mayo Clinic.
[link to www.prevention.com (secure)]
Anonymous Coward
User ID: 77220250
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03/12/2019 01:43 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
Eight-year-old Emma Fogarty of Waconia lost her life to Diffuse Intrinsic Pontine Glioma (DIPG), a rare tumor located at the stem of her brain. This is a story of family, appreciation for life and how Ridgeview Hospice touches lives in extraordinary ways.

[link to www.ridgeviewmedical.org (secure)]
 Quoting: rewind


Is Emma left connected to Emma fogarty?

Coincidence realm ?
Anonymous Coward
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03/12/2019 01:44 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
Eight-year-old Emma Fogarty of Waconia lost her life to Diffuse Intrinsic Pontine Glioma (DIPG), a rare tumor located at the stem of her brain. This is a story of family, appreciation for life and how Ridgeview Hospice touches lives in extraordinary ways.

[link to www.ridgeviewmedical.org (secure)]
 Quoting: rewind


Is Emma left connected to Emma fogarty?

Coincidence realm ?
 Quoting: Anonymous Coward 77220250


Correction: Emma leet
Serowin  (OP)

User ID: 76670987
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03/12/2019 01:48 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
So here I am, along with my wife, surrounded by 6 people, a dr and his fellow (apprentice), life care specialists and social workers and a nurse.
They begin to ask us questions about our state of mind etc. They ask about our family. They want to know if there is anything else they can do to support us. I tell them I have some novel ideas for treatment.
I tell them about Cannabis oils. I actually printed this paper and gave it to them.

[link to www.ncbi.nlm.nih.gov (secure)]

They were somewhat impressed and agree its worth a shot. I ask them if they can provide a legal paper we all can sign stating they are aware and agree to having the parents give Emma cannabis oils. They agree and go on to state that they can not provide it, can not administer it, can not give any advice on dose, timing or concentrations.

They then say that the university, Macmaster U, is investing millions in a new ward, a medicinal cannabis ward.

Considering the ring of fire she was surrounded by, I tend to attribute the rapid recovery we are seeing to the CBD, but I must admit the radiation is also kicking some cancer ass.
Anonymous Coward
User ID: 74632481
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03/12/2019 01:50 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
Why do you need donations if you live in Canada?

Is the medical care not free?
 Quoting: Anonymous Coward 77363287


Travel, babysitters, many extra expenses, meals at the hospital, etc etc etc.

The supplements are all out of pocket expenses, I assume. Many supplements are very expensive, CBD is NOT cheap.
Anonymous Coward
User ID: 76112273
United States
03/12/2019 01:55 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
Considering the ring of fire she was surrounded by, I tend to attribute the rapid recovery we are seeing to the CBD, but I must admit the radiation is also kicking some cancer ass.
 Quoting: Serowin


The Project CBD (non-profit) group just recently released a paper on CBD and drug interactions, the PDF can be downloaded at the bottom of this article:

[link to www.projectcbd.org (secure)]

And if you're on FB, you can search for a group called 'Cannabis Oil Success Stories' - which could prove to be a good resource....

:greenkarma:
Anonymous Coward
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Canada
03/12/2019 01:58 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
I see my question was removed.

The gofundme page and the flag for OP says the location is Canada. Hamilton, Ontario on the gofundme.

I'm just asking why you need donations? Isn't her medical care free there?
 Quoting: Anonymous Coward 77363287


Health care is free.

For people under the age of 25 in Ontario, prescription medications are 100% free as well.

The only thing not covered are experimental treatments or therapies, or non-conventional treatments.


But even if its something medically related, and you have to pay for it, then its 100% tax deductible at the end of the year.
Serowin  (OP)

User ID: 76670987
Canada
03/12/2019 02:02 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
So while in the meeting the topic comes up of vaccination.

Me and my wife Josie have 9 kids, 1 man, 1 women lol. We started when we were 19. Most of our kids have been vaccinated, but the younger ones, including Emma, have not.

Our family doctor is a really old guy from Romania, he is not a pro vaccine guy. In fact, he told me about when his young wife gave birth to his child. He was given the same treatment we all get to force vaccines on the newborn, he was very adamant about not vaccinating until the child was older and stronger. They didn't know he was a life long physician. He had to prove his rank before they backed off. He stated to me that he will never try to convince anyone to get vaccinated, unless there was an massive outbreak.

So anyway once the ward knew Emma was not vaccinated they gave us the presidential treatment. Odd right? She gets her own room, nurses are sterile etc. Its the treatment everyone should get.
****Note, if you require a personal room for medical care in Canada and don't want to pay 300$ a night, tell them your not vaccinated.
Then started another week of radiation treatments. So far she has had 8. You can't smell it, taste it, see it or feel it. But the machine is called a linear accelerator, and wow its something to behold. Its like a dragon crew capsule that floats around your head going, BEERRRZZZZEP over and over.
She watches a movie while its going and usually just chill for the 5 mins. I sit in the waiting room pacing, or crying, but she's a champ and just wants to get it over with.
Next up.... pediatric occupational therapy and nutritionist
Deplorabelle

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03/12/2019 02:02 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.


Last Edited by Deplorabelle on 03/12/2019 02:06 AM
nutmeg

User ID: 76388104
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03/12/2019 02:05 AM

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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
Eight-year-old Emma Fogarty of Waconia lost her life to Diffuse Intrinsic Pontine Glioma (DIPG), a rare tumor located at the stem of her brain. This is a story of family, appreciation for life and how Ridgeview Hospice touches lives in extraordinary ways.

[link to www.ridgeviewmedical.org (secure)]
 Quoting: rewind


did you guys not just catch this?
 Quoting: TriggaDre


Yeah....but OP is from Canada. Did you catch that? Waconia is a city in Carver County, Minnesota, United States.

Last Edited by nutmeg on 03/12/2019 02:10 AM
Anonymous Coward
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03/12/2019 02:09 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
optometrist?.....sorry but I don't think you know what your talking about.
 Quoting: Anonymous Coward 10485453


the sad ass OP? Prolly not. I am saying horrible things and nothing so far but its little back up poster offering prayers. GoFundMe link on glp? really? Why is that allowed?
 Quoting: rewind


That's up to the site owner, not to you, fortunately!
 Quoting: Pooka


here is the reason for the gofundme:

*********If we are able to get her into a clinical trail in the USA, there would also be travel costs and expenses associated with that, although we are not 100% sure she will and would ask that any donations for now be focused on maintaining a stable home and family for her.

*************If we are able to get her into a trail or if we are able to find a way to purchase an experimental drug, we would reach out at that time to inform everyone that we are raising moneys for that purpose.
I have just thrown this together on a whim, I promise to update it in a more professional manner.

So send money, and they'll decide what to do with it later?
Anonymous Coward
User ID: 77449584
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03/12/2019 02:11 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
Eight-year-old Emma Fogarty of Waconia lost her life to Diffuse Intrinsic Pontine Glioma (DIPG), a rare tumor located at the stem of her brain. This is a story of family, appreciation for life and how Ridgeview Hospice touches lives in extraordinary ways.

[link to www.ridgeviewmedical.org (secure)]
 Quoting: rewind


did you guys not just catch this?
 Quoting: TriggaDre


Yeah....but OP is from Canada. Did you catch that? Waconia is in the USA.
 Quoting: nutmeg


OP's gofundme page says they are in Hamilton, Ontario with the name Josie Leet
rewind

User ID: 77432918
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03/12/2019 02:12 AM

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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
Eight-year-old Emma Fogarty of Waconia lost her life to Diffuse Intrinsic Pontine Glioma (DIPG), a rare tumor located at the stem of her brain. This is a story of family, appreciation for life and how Ridgeview Hospice touches lives in extraordinary ways.

[link to www.ridgeviewmedical.org (secure)]
 Quoting: rewind


did you guys not just catch this?
 Quoting: TriggaDre


Yeah....but OP is from Canada. Did you catch that? Waconia is in the USA.
 Quoting: nutmeg


OP's gofundme page says they are in Hamilton, Ontario with the name Josie Leet
 Quoting: Anonymous Coward 77449584


tomato
Serowin  (OP)

User ID: 76670987
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03/12/2019 02:13 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
******FREE MEANS RATIONED

*****FREE MEANS 1 NURSE PER 6 CANCER PATIENTS

****FREE MEANS YOU WAIT AND WAIT

***FREE MEANS YOU EAT POISON FOOD

**FREE MEANS YOUR A NUMBER

*FREE MEANS YOU GET WHAT YOU PAY FOR

Anyone who thinks because healthcare is free that you will get the same level of quality as something you pay for has not experienced "free healthcare".

While I'm extremely thankful to live in a land that has free healthcare, I can tell you I have spent nearly $1000ca dollars on hospital foods, parking and uncovered medicine in just a couple weeks. Thats after paying our whole lives in taxes.

In the room next door to me was a lady that had spend 15000$ on hospital bills. She is there because she came into the emergency with her daughter who she thought was having an appendix problem. They gave her meds and sent her home. Less than a week later, her daughters appendix burst and now she is in long term care at the hospital that sent her home. She has to pay for her private room because her daughter is vaccinated......wtf??

Know what the Dr's told me? If I had a stroke in front of them, they would have to call an ambulance, to take me to a different hospital because they are a pediatric hospital. They are one of the only hospitals on earth to have a nuclear reactor for gods sake lol.
Anonymous Coward
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03/12/2019 02:14 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
wow thank you all for the pine!

DIPG stands for diffuse intrinsic pontine glioma. It grows on and in the brain stem. It is a tumor which spreads out like threads into the nerves. It is very smart, the more I learn about it the more it seems to be engineered. Its like a virus in the glia cells, hacking them so they mutate into cancer cells. They also grow their own blood vessels. It's only been labeled for a dozen or more years.

Here are some leads I am pursuing ...
[link to oncoceutics.com (secure)]

[link to www.ncbi.nlm.nih.gov (secure)]

There is also a kid near us that made the news because he has the measles
[link to www.ncbi.nlm.nih.gov (secure)]

desperate times call for desperate measures.
 Quoting: Serowin


I always said if me or mine ever was so unfortunate to be stricken with any type of cancer especially the inoperable type with nothing else to loose, that I would use Graviola. It works so well that you have to take high levels of anti-oxidants to help your system process all the dead cancer cells. It seeks out and destroys high energy cells. Does nothing to normal cells. My thoughts and prayers are with you.hf
Anonymous Coward
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03/12/2019 02:17 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
So what about the discrepancies with your gofundme page mentioned above, OP?
Serowin  (OP)

User ID: 76670987
Canada
03/12/2019 02:19 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
Ok Im spent here. I want to tell everyone about the arsenic in baby foods that the hospital is trying to feed my kid, and how I have to fight them, nicely of course, to get them to look at the data. Ironically, I learned about it while watching TV in Emma's room one night.
[link to www.cbc.ca (secure)]

One of them actually said to me.....and I try to quote.
"Well we get alot of people that want to try differant foods but alot of the times it comes from alex jones and he isn't reliable"
I admit I laughed out loud when she said that.

To be continued...
Anonymous Coward
User ID: 72848467
United States
03/12/2019 02:20 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
(Many thanks for allowing this thus far, I should have sought approval)
Hello friends. I have been lurking here for ages, not much of a poster but due to circumstance I find myself in survival mode willing to try anything. I don't facebook or any of that, so really this is one of my only social outlets to try.

My 8 year old daughter Emma, has been diagnosed with Diffuse Intrinsic pontine glioma. Its a rare brain cancer which grows on the brain stem and it is inoperable. This struck her out of nowhere, we had recently been told by an optometrist and audiologist that her symptoms where due to hearing and vision loss, nothing to worry about. Glasses and hearing aids. Never trust free health care!!

Emma has been in the hospital for 2 weeks and has begun her 33 radiation treatments, which is the only treatment available due to the tumors location. She was very close to dying, but has regained some of her motor skills, and is now eating soft foods. This in itself is miraculous!!

I also have been giving her CBD oils... as I have read many scientific papers on prepping tumors for radiation with cannaboids causing a greater reduction in the tumors, as well as the anti inflammatory, anti fungal and many other positive aspects to it. I will also be preparing foods at home using honey, pineapple, carrot and other known super foods to give her every possible fighting chance.
I have not given up hope despite the prognosis, how could I? There are several clinical trials coming up which she may qualify for as well, it truely seems alot of cancer cures may be on the horizon, if they can get past the corporate interests and all that. ONC201 and ONC206 look very promising for this H3 K27M cancer in particular.

Im reaching out here on a gofundme, knowing how greedy I sound. Knowing I have seen this sort of thing before and ignored it, so please if you ignore it, do not feel bad, perhaps thats how karma works...
If anyone reading this has any information, or leads, or knowledge which may help, anything please share. I will be monitoring this thread, but probably not for a day or so as I've been up for a very long time.
Regardless of the outcome I want to thank you for reading our story.

[link to www.gofundme.com (secure)]
 Quoting: Serowin


This eight year old Emma Fogarty passed away from DIPG in Waconis, MN.

[link to www.ridgeviewmedical.org (secure)]

What an amazing coincidence.
rewind

User ID: 77432918
United States
03/12/2019 02:22 AM

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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
Ok Im spent here. I want to tell everyone about the arsenic in baby foods that the hospital is trying to feed my kid, and how I have to fight them, nicely of course, to get them to look at the data. Ironically, I learned about it while watching TV in Emma's room one night.
[link to www.cbc.ca (secure)]

One of them actually said to me.....and I try to quote.
"Well we get alot of people that want to try differant foods but alot of the times it comes from alex jones and he isn't reliable"
I admit I laughed out loud when she said that.

To be continued...
 Quoting: Serowin


a bit off topic? good fuck!
Anonymous Coward
User ID: 75993659
Canada
03/12/2019 02:25 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
While I'm extremely thankful to live in a land that has free healthcare, I can tell you I have spent nearly $1000ca dollars on hospital foods, parking and uncovered medicine in just a couple weeks. Thats after paying our whole lives in taxes.

 Quoting: Serowin


This does not compute.

As a parent who had a child stay in the ICU for nearly 80 days, your stated money spent does not correlate even remotely close to what I experienced.

What uncovered medicine? If you live in Hamilton (Ontario) then your daughters medicine is 100% covered by OHIP. And being only few weeks into treatment you would not have been referred yet to experimental treatments or clinical trials. That usually occurs at the 6 month mark.
Anonymous Coward
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03/12/2019 02:28 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
So what about the discrepancies with your gofundme page mentioned above, OP?
 Quoting: Anonymous Coward 72848467


The OPs behaviours are weird. Instead of answering concerns, he/she is posting very random unrelated weird posts.
Serowin  (OP)

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03/12/2019 02:28 AM
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Re: Can you help me GLP?? DIPG diagnosis in 8 yr old daughter.
So what about the discrepancies with your gofundme page mentioned above, OP?
 Quoting: Anonymous Coward 72848467


Well Im not sure how to address that friend. I read about the other Emma that had the same brain cancer, believe me when your looking for hope and find another kid with the same name as yours that died from the same tumor you just want to break apart. What could I do to prove my kid is dying? Do you want the phone number to the ward she is in? I'll gladly provide it for you and you can call Mcmaster university in hamilton ontario and ask to know what bed the Leet's are in.

I don't want your money or sympathy. I want you to be aware this is a real thing that affects real people. It could be that little kid you know and your damned right after this my primary goal in life will be to help heal others and relieve their suffering, as it should be with us all.





GLP