“Living Each Day to the Fullest” – diagnosed with Ependymoma at age 4

I heard some good advice from a guy whose wife’s best friend was diagnosed with glioblastoma, Grade 4, it was something like “enjoy every day.”

I had a hard time with that advice for a while – how could they enjoy life knowing that she had this horrible disease eating away at her, inexorably dragging her into the grave?

I now think differently about this advice. I don’t believe the advice is trite or Pollyanna-ish or divorced from reality. I think its sound advice that reminds us all to cherish what health and family we have while they are with us. 

I know of no other story that tugs on my emotional heart strings as hard as stories about children with cancer, like many of the Ependymoma stories you’ll find on the CERN website.

I’ve attached a link to one such story that brings this idea to life - a story about little four-year-old “Sophia L.” with Intramedullary Ependymoma. You can read about her and her mother here: https://cern-foundation.org/?page_id=6411

Latest GBM Insight: Immune Genes Identified that Affect How Long Victims May Live

The lead sentence from an article written by Robert Preidt says it best “Researchers have identified immune genes that may affect how long people live after diagnosis with a common type of brain cancer.” See https://www.nlm.nih.gov/medlineplus/news/fullstory_159031.html

He goes on to quote study auther study author Dr. Anhua Wu, of First Hospital of China Medical University in Shenyang, China  who said "We've had luck with other types of cancer in removing the brakes on the immune system to allow it to fight the tumors, but this has not been the case with glioblastoma".

My scatological reaction is “no shit.”

Yet, it’s an important step that no one else has taken.

Preidt goes on to note that “If confirmed in other studies, the researchers say their findings could lead to improved treatment in the future.”

Here’s another important insight from Preidt’s article that, one hopes, identifies a tipping point: “Dr. Rifaat Bashir, a retired neurologist in Reston, Va., wrote an editorial accompanying the study. ‘The looming question in brain cancer research today is whether the launch of immunotherapy will help control an uncontrollable disease,’ Bashir said in the journal news release.”

"While this study does not answer this question, it brings us one step closer to believing that one day we will be able to exploit the immune system to better treat glioblastoma," Bashir noted.

The report was published online May 25 in the journal Neurology - http://www.neurology.org/content/early/2016/05/25/WNL.0000000000002770.short?sid=9afcf6d4-b9f2-4f7f-b9dc-2dcf638cb84d


PS - According to the stock photo site from which I purchased this 3D animation the keywords describing this visual include brain, cancer, cancer cell, dead body, illness, and somewhat surprising to me ""beauty and health" 

Copyright: <a href='http://www.123rf.com/profile_vitanovski'>vitanovski / 123RF Stock Photo</a>

Buy a Butterfly, Help a Kid: 2016 Ependymoma Day

Of all the bad cancers out there, Ependymoma is one that I really detest.

According to the CERN website - http://cern-foundation.org/ - “An ependymoma is a rare type of primary brain or spinal cord tumor. It occurs in both adults and children. Primary tumors are those that start either the brain or spine. The brain and spine are part of the central nervous system (CNS).

Ependymomas make up about 5% of adult intracranial gliomas and up to 10% of childhood tumors of the central nervous system (CNS). Their occurrence seems to peak at age 5 years and then again at age 35.”

So here’s a crappy cancer that whacks folks in early childhood or, quite possibly, right after they’ve started a career/family.

Ugh.

You (yes, you!) can help. You can buy a butterfly as part of their innovative fund-raising campaign. At $25/butterfly it just may be the best investment you can make this year. With your powerful $25 butterfly you will help support basic research, promote Ependymoma awareness and, when you watch the mass butterfly release, have a big grin on your face knowing that you did something to help victims of this terrible disease.

Here’s the link to buy your butterfly: https://secure.acceptiva.com/?cst=f10f74

And, as always, I hope my butterfly will be a blue morph.

John

PS - Yes this is not the most prevalent brain cancer, but it's one that, reading the stories of  affected children and their parents, is most likely to make me weepy.