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This mom of a 15 year survivor thanks you for sharing your story and your heart. May a long happy life be yours! ❤️

Co u was slychać jak czuje sie żona?

Wow

Live long 💖

JW brother ❤️

CERN are child molesters and traffickers

Which who grade was the ependymoma.

Basically my younger brother (38) was diagnosed and operated on for a Myxopapillary ependymoma of the conus and filum terminale in 2008 at Kings college hospital. Within the last two-three years he has been suffering with some severe back pain and what can only be described as a faecal smell sometimes emanating from his bodily odour. He occasionally has trouble controlling his bowel movements that are rarely ‘normal’. We’ve pursued it with the NHS to no avail but I am worried about his mental state now as he feels that this is the ‘beginning of the end’ for his career and for his legs basically. It’s getting reasonably serious as every day that passes, his reluctance to leave the house grows. Are you familiar with such symptoms so long after surgery? Look forward to hearing from you. Many thanks James, concerned older brother UK

Keep up the good work, the world needs it. I lost my first born daughter to an Ependemoma 38 years ago. There is a study on her at the Iowa City Hospital, in Iowa. Her first surgery was in Dubuque, Iowa. Her name was Angela A Alexander. Bless all who is working on discovering more on this cancer.

God Bless each and every Ependymoma survivor as well as their families. Fellow adult spinal Ependymoma survivor

Dr. Gajjar was our doctor. He is absolutely amazing!!

Hi Allie and Mitch. How can i contact you? My wife is with an recurrent anaplastic Ependymoma as well.

God bless you and your family. I'm so glad to hear that your son is doing well. I lost my oldest daughter, 36 years ago, to an Ependemoma. It started when she was 8 and she passed just a month shy of her 13th birthday. It was at the base of her brain, the size of my fist, and they could not remove all of it. Yes, she went through a round of radiation treatments also. Back then, they knew very little of this type of tumor. We lived in Iowa, and in fact, they did a study on her at the University of Iowa City hospitals. Somewhere out there is a book about her. I'm hopeful that this study has helped others. May your son continue to do well!❤

Hang in there brother , I had a 12 hour brain surgery only fourth ventricle between the cerebellum and the brain stem for an ependymoma 27 years ago and I'm still kicking by the Grace of Gawd✔️

You’re far from alone, Anthony. I had a similar case when I was 15 years old, and, after surgery twice, radiotherapy, and now, chemotherapy, as well as adjunct radiotherapy, I was in the same boat, but, my ependymoma wasn't in the spine, it was in the posterior fossa, just above my brain stem. Lots of therapy, and about 10 years later, I feel like I am where I was before my diagnosis. Stay strong, and focused on recovery. I wish you the best.

Wish they had more information about these 36 years ago! 😥

Good video. Liked, and subbed to this channel. Gives good info about ependymoma research, and treatment.

Thank you for sharing and keep flying high! In memory of my daughter, Angela. ❤

You are a very lucky woman. I lost a 12 year old daughter to an Ependemoma, but that was almost 36 years ago and not much was known about it. Supposedly there is a work up on her case at the University of Iowa City hospital, but I was never allowed to see it. God bless you!

Thank you for what you do! I'm 22 years post-surgery for my spinal ependymoma (C2-T4). Thanks to Dr. Welch! :-)

Good vid. I’m a 23 year old male, currently dealing with a 3rd recurrence of this cancer. I had it surgically resected at 15 (I was lucky enough to find a neurosurgeon willing to work on me), and have also had a recurrence treated via radiotherapy at around 21. Because of complications due to meningitis post-op, I have a permanent issue with hydrocephalus, as well as issues with my balance, most likely due to the meningitis damaging my cerebellum, which ended up being resected anyway, because it was virtually totally scar tissue at the time. I appreciate, and enjoy this channel, and how it explains in a calm, informative way about how to handle this condition.

I am a survivor! Ty so al your kindness, and making this aware foe everyone!

I am a survivor of this cancer..

Thank you so much for this I am a survivor of this cancer! God bless all of you.

such a beautiful video 💙

I am also a survivor of this cancer..

This is fantastic idea to have an awareness day for Ependymoma. Using the butterflies to represent hopes - what a wonderful idea.

this was so beautiful 💛

Sweer,Rosita.soul survival and A True believer of this Deadly disease.So Sorry to hear that u had this problem.But i know for a fact you have an Angel that has permission from jesus to help you fight this and you have.and because you believed that jesus has the power to dismiss your disease then you are held .so yes i believe that jesus will heal lots and lots of others as well cuz their is power in his name.and the devil is a liar.cuz sickness doesn't belong to jesus.so i raise my hands to the most high and believe that our lord has the power to do the healings.Amen.so yes Rosita my deepest from my outter heart.i am so glade u are heal.cuz i beleave it.I will pray for those others who yet need our prayers and for ourselves too.God Bless My Friend,Rosita.👏👏👏🙏🙏🙏🙏🙏🙏🙏👏👏👏👏👏

I had this type of Cancer.(spinal cord)

From my personal experience, I would say that its important not to gloss over the pain when it comes to diagnosis. Just from anecdotal evidence from talking to others with back issues. It's unlike a lot of other kinds of back issues. Or rather, the pain and symptoms combine in unusual ways. I went years with no health insurance. Free clinics told me it was peripheral neuropathy due to diabetes (which I didn't have). A chiropractor told me it was a slipped disk. When I finally saw a specialist, I could barely walk without a cane. The surgeon said the ependymoma he removed from my lower back was close to 6 inches long. He said he was surprised that I could stand. It took years before someone decided to do a simple nerve conduction study and realize that my pain was real. I even had a few places openly suggest that I just wanted pain medication, even after I refused the drugs.

Look for our dear Princess Warrior Mimi in the video!

Call the, Mayo Clinic, Rochester, MN. They have awesome doctors who as well helped me with my ependymoma. I live in Nebraska and we didn't have the surgeon who had the ability to do the surgery. My husband and I got on the internet and within a week I had an appointment. The best of luck. GOD BLESS!

My mother suffer for an ependymoma in the spinal cord, but unfortunately in mexico the imss doesn't not want to removed due to her edge only 67 yrs. so hope I can find some neuroseguen to help her.

Butterflies are fun. Good health to all.

Awesome and inspiring!

Renewal, inspiration and hope is possible with the CERN foundation fighting for us. I'm an ependymoma survivor. Thank you for this important research. Theresa S.