Tag Archives: Atypical Teratoid Rhabdoid Tumor

A Devastating Loss

27 Sep

I am deeply saddened to report that Avalanna Routh died yesterday at the age of 6. I first wrote about Avalanna on February 18th, 2012 (https://cancerandcandy.wordpress.com/?s=routh&submit=Search).

Avalanna  was diagnosed at 8 months old with a rare form of brain cancer, Atypical Teratoid Rhabdoid Tumor, or AT/RT. Avalanna had a dream to meet international pop super star Justin Bieber. She was such a big fan that her nickname was “Mrs. Bieber”. With some help from her friends at a local hair salon and social media her dream of meeting
Bieber became a reality. After hearing Avalanna’s story, Bieber flew Avalanna and her family to NYC so they could meet. They spent 2 hours playing Candyland, laughing and taking pictures.

After hearing of her death, Bieber tweeted Wednesday: “just got the worst news ever. one of the greatest spirits i have ever known is gone. please pray for her family and for her. RIP Avalanna. i love you.”

Watch more of Avalanna’s story here http://youtu.be/mYRaPMcyL_g

Avalanna’s strength and spirit will never be forgotten.

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I Have Bieber Fever

17 Feb

Social Media can be very dangerous.  I have heard more than one story about Facebook being used by kids to bully each other. I am constantly reading warnings on Craigslist reminding me to be careful of whom I meet and interact with. However, social media is not always a bad thing. Facebook is great as it helps me to remember friend’s birthdays. I love using Twitter as a way to stay up to date on the latest in healthcare and all things Kardashian. Recently a friend told me about a story where social media actually made a dream come true.

Avalanna Routh is a 6 year old from Methuen, Massachusetts who was diagnosed at 8 months old with a rare form of brain cancer, Atypical Teratoid Rhabdoid Tumor, or AT/RT. Often after a grueling day of treatment at Boston’s Dana-Farber Jimmy Fund Clinic, Avalanna will go to a local spa for some much needed rest and relaxation. It is here that she spoke about her dream to meet international pop super star Justin Bieber. When employees of the spa found out how badly she wanted to meet Bieber, they started a media campaign to make her wish a reality. They tweeted, facebooked and contacted every newspaper, radio and television station to get the attention of someone from Bieber’s camp. As it happens, a staff member from the local Fox network reached out to a friend that had connections to Justin Bieber’s manager

After hearing Avalanna’s story, Bieber flew Avalanna and her family to NYC so they could meet. They spent 2 hours playing Candyland, laughing and taking pictures. What is more, friends and family hope this brings attention and funding to AT/RT. Since this disease affects such a small population drug companies have little incentive to spend money developing much needed treatment that could one day lead to a cure.

(Photo Tweeted by Justin)

I have to admit I was not a huge fan of Justin Bieber but now I have Bieber Fever.

After their time together, Bieber tweeted that meeting Avalanna was “one of the best things I have ever done” and referred to her as “Mrs. Bieber”.  He even included a picture of them goofing around in his tweet.  Beyond the obvious, what has really impressed me about this story is that Bieber could have easily phoned Avalanna or sent her an autograph.  Some celebrities might have ignored the request all together but instead Bieber flew from LA to NYC for a two hour play date with her.

 The power of social media is really amazing as this whole thing happened within 5 days. It certainly makes it harder to say “that’s impossible” as it really seems that with a little help from Twitter, Facebook and friends, dreams really do come true. Congratulations Mrs. Bieber.

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