Wednesday, July 1, 2015

Ependymoma Awareness Day 2015

 For those of you that are not aware, May is Brain Cancer Awareness month. The ribbon color for brain cancer is gray, so the saying is "Go Gray in May!" Specifically in May, there is an Ependymoma Awareness Day which is May 5th. So this year on May 5th, I wanted to have a party to raise awareness of brain cancer and ependymoma in particular. We actually ended up doing it the 6th because I worked all day on the 5th and then went straight to my math class to take a final. 

One of my friends made this for me. A blue butterfly is the symbol of ependymoma awareness.

I asked my friends and family to wear gray on May 5th in support of brain cancer awareness and hashtag their photos on social media #GoingGrayForMightyMagnus. SO many people did it and tagged me. I cried every time I saw a new photo. I love the support and I showed Magnus how many people were wearing gray in support of brain cancer awareness. We also had lots of texted pictures to us of people wearing gray for him.
 Of course, all of our kiddos wore gray that day. I have to wear all black to my salon job, but I rebelled and wore a gray sweater anyway.

All of our friends wearing gray

I just thought this was funny. I was probably pretty annoying with all of my postings. I don't even care.

On the 6th, Magnus and I went and picked up lots of blue and white balloons for our little get together. We had a balloon release.
 Also, a cake. I bought a butterfly cookie cutter and was going to make sugar cookies, but I didn't. Not enough hours in the day, ever. So a bakery cake did the job.

We were planning on having this party outside but, of course with the crazy May weather, it was pouring rain. So my tiny house was filled to the brim! It was great.

After everyone arrived I told everyone that I wanted to do my part to help raise awareness for Ependymoma, even if it was just a small group that I was helping to become aware. I hope to do it bigger next year. Even though this disease doesn't affect a large number of people, every child should have a voice to cheer them on and should be heard. I read some facts about brain cancer, and them some facts relating specifically to ependymoma. 

Brain Tumor Facts
  • Approximately 1 in 330 young people will be diagnosed with cancer before the age of 19.
  • On average, 46 children and adolescents are diagnosed with cancer every day in the U.S.
  • One in every four elementary schools has a child with cancer.
  • Cancer is the leading cause of death by disease in children under the age of 15 in the United States.
  • Cancer in childhood occurs in all ethnic groups, socioeconomic classes, and regions.
  • Brain tumors are much more likely to occur in childhood than in adulthood.
  • Every year, over 100,000 people in the U.S. will be diagnosed with a primary or metastatic brain tumor.
  • Brain tumors are the most deadly of all the childhood cancers.
  • Brain tumors can be malignant or benign and either case can be life-threatening.
  • The effects of brain tumors can be devastating because they are located at the control center for thought, emotion, and movement. In many cases, brain tumor survivors live  with physical and/or psychological disabilities.

Ependymoma Facts
  • Nationwide, there are about 120 childhood Ependymomas diagnosed per year, and about 80 for young adults (21 years +).
  • Ependymomas account for approximately 7%-8% of all pediatric brain tumors.
  • Ependymomas can be malignant or benign, but in either case, they are life-threatening.
  • Ependymomas do not respond well to conventional cancer treatments like chemotherapy and radiation.
  • Most Ependymomas occur in the first 5 years of life.
  • An Ependymoma is considered to be cured if there is no relapse after 6 years have elapsed.
  • Once an Ependymoma tumor recurs, it is over 90% certain the tumor will continue to come back until the patient dies from the tumor.
  • There are only three institutions in North America that study and treat the Ependymoma specifically: Toronto Sick Kids Hospital in Toronto, Canada; St. Judes Hospital in Memphis, TN; and Children’s Hospital Colorado.
 I really tried not to cry while I read these facts, but I did get a little choked up. It is sad when anyone dies, but when a child dies, especially from something as devastating as cancer, it is especially sad to me. 

After that, I explained that I wanted everyone to write on a balloon their wish for a child with cancer, more specifically, brain cancer. It could be anything they could think of.

It was a crazy few minutes while everyone shared sharpies and wrote out their desires.

 We went outside and released our balloons into the rain.
 We went back inside and had cake and chatted. And it all just made my heart full. The love and support that our family has given us over the last several month since Magnus' diagnosis has meant the world to me. I could not ask for a better family. I love them all, so very much. My hope is that someday cancer will be cured, so that we won't even have to have "cancer awareness months" at all. Who knows? My wish just might come true.

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