Showing posts with label pediatric cancer. Show all posts
Showing posts with label pediatric cancer. Show all posts

Friday, March 1, 2013

Celebrate Donna Day 2013 with me!

This smile!

When I found Donna's Cancer story, I admit- I didn't want to read it. Not at all. I knew it was out there, I saw links to it every day in my Facebook news feed, but I didn't want to read what was sure to be a heart breaking, sad story. 
As I looked at my own kids, I told myself that I could never endure the story of a beautiful little girl living through 31 months of cancer treatment and the pain her family endured. I didn't want to get to know this family, only to lose a precious member of it. 
The day came, when I decided to just start reading. I had already saw several re-posts on my Facebook of  number 16 Relapse, and I started reading. And I didn't stop until I was caught up. And   And I cried. Ugly, snotty crying. And I kept reading, stopping only when I couldn't see the screen through my tears.  
 I have never felt such a connection, to Donna and to her family who until that day, were total strangers to me. Just another sad story of a child with cancer. But it was so much more.  I was blown away by the raw, honest beautiful way Sheila, aka Mary Tyler Mom, wrote about her daughter, her family, her fears, her hopes. This was written TO me, FOR me. This was written in such a way, I felt like I had been sitting with Sheila having coffee as she told me this story. That is powerful my friends.
The feelings evoked in me after reading Donna's story ran the gamut from sadness, to hope, to anger, to fear and to guilt. Guilt that my kids would be home for me to hug them, guilt that I complain about dealing with autism, about teacher's and IEP's. The same guilt I sometimes feel when I read a blog written by a parent dealing with a child who doesn't speak, when mine does.The Boy is autistic.He is not like the other kids. He may be a 7 year old in a 10 year old body. He may be wild, unpredictable and sometimes make me want to scream. But I get to  hold him every day. My struggles are a cake walk in comparison to what Sheila's family lived through, what Donna endured.  I was extremely humbled by Sheila's words in installment 30 Choosing Hope:
"When all of this began so long ago and I first typed the  words 'choose hope,' my guess is that most folks assumed the hope was for Donna's cure.  If I'm honest with myself, it probably was for a time, but as much as that mantra is for Donna, it was for me as well.  To remind myself that hope comes in many forms and, more importantly, it is a frame of mind, a choice one makes.  For so long, and to this day, it is the only way to live.  Without hope, how would I wake up in the morning?  Without hope, how do you continue to be with Donna, laughing and playing and so brightful, knowing that she will be gone much too damn soon? "
It is completely amazing to me how Sheila's family fought. How in the midst of it all they welcomed a new life into their family. How they coped,how they survived,how they “chose hope” in the face of such despair.
After hearing her dad and I talking about this amazing blog, my Teenzilla decided to read it too. Her reactions were filled with all the vehemence and anger that only teenage girls can muster. "F**K CANCER. What bullshit!"  
My Teenzilla
It was around that time that I first heard of the St. Baldrick's Foundation. St. Baldrick's began as a head-shaving event and continues to be the signature event of the Foundation. "Shavees" ask friends and family to make donations "on their head" and in return, they attend one of thousands of volunteer-organized events around the world where they have their heads shaved in solidarity with kids fighting cancer.mSince 2000 more than 230,000 shavees—including more than 22,700 women—have shaved their heads at 5,500 events, raising critical funds for childhood cancer research. 
I watched as several of my friends made their way to Chicago last year, and prepared to shave their heads. I donated and cheered them on. I followed their blogs and their Facebook pages. And I shared all of this with Teenzilla.  She looked at me after seeing all the pictures of the newly bald, and said, "I want to do that". I chuckled, and I said, yeah, right. She looked me straight in the eye and said- "I am serious mom. So many kids have to go through chemo and lose their hair and they don't have a choice. I want to do this. It's just hair. It will grow back."

I told her that I would support her 100% if she wanted to do this, but secretly I thought she would never do it. The next event was a year away- that was a lot of time to think about it. And being a fickle teen girl- I expected her to forget about it, and then change her mind.  
And now here we are, 17 days away from the event, a little over $1000 raised by her, just over $2000 raised by her team, Donna's Good Things Team Michigan and she, while a little nervous, is still as determined as ever. If I could bottle that passion- I would be a millionaire! 
What I need you to do now is: 1)READ DONNA'S STORY!  Statistics are scary- this story will make you see beyond the statistics, into the life of an amazing family, and a very precious little girl. You will BE in the hospital rooms with them, you will SEE Donna's gorgeous smile and amazing blue eyes, you will KNOW her love to dance, you will FEEL all the feelings. Do it. 
 2) Please please please visit, Donna's Good Things at Candlelite Chicago, and click on the GREEN BUTTON  to donate. $5, $10- it is ALL helpful and goes to an amazing cause.  
3) Watch this wonderful 3 minute video






4)Watch Donna's Radiothon story Song... 











CLICK THE GREEN BUTTON!!!

Tuesday, October 9, 2012

Would you shave your head for a great cause?

My girl!
What would you be willing to do to make money and a statement for a great cause? Would you be willing to shave your head? I know I wouldn't. But my Teenzilla is. My heart is so full and proud- I really can't describe it.

Last year we started reading Donna's Cancer Story.Sheila Quirke, AKA Mary Tyler Mom, wrote a heartbreaking serial blog about her beautiful daughter Donna, and her 31 months of treatment. I have never read anything more gut wrenching than this. I sobbed. I raged. I shared this beautiful girl and her beautiful family with everyone.

Donna
Teenzilla read Donna's story too- and like me she cried and said "Fuck Cancer. What bullshit. It's not fair."
Said with all the conviction and vehemence only a teenager can muster.

 Through Mary Tyler Mom, I learned of the St. Baldrick's Foundation. "On March 17, 2000, reinsurance executives John Bender, Tim Kenny and Enda McDonnell turned their industry's St. Patrick's Day party into a head-shaving event to benefit kids with cancer. Their 20 "shavee" recruits planned to raise "$17,000 on the 17th." Instead, they raised over $104,000!  Now this has turned into the world’s largest volunteer-driven fundraising program for childhood cancer research  and today the St. Baldrick's Foundation funds more in childhood cancer research grants than any organization except the U.S. government."

I watched as several of my friends made their way to Chicago last year, and prepared to shave their heads. I donated and cheered them on. I followed their blogs and their Facebook pages. And I shared all of this with Teenzilla.  She looked at me after seeing all the pictures of the newly bald, and said, "I want to do that".

I chuckled, and I said, yeah, right. She looked me straight in the eye and said- "I am serious mom. So many kids have to go through chemo and lose their hair and they don't have a choice. I want to do this. It's just hair. It will grow back."

I told her that I would support her 100% if she wanted to do this, but secretly I thought she would never do it. The next event was a year away- that was a lot of time to think about it. And being a fickle teen girl- I expected her to forget about it, and then change her mind.

Then a few days ago, my friend Danielle from Life With Penis People, who had talked about starting a team last year,  asked if Teenzilla was still interested- because she was starting a team here in Michigan. I asked Teenzilla and she said "Oh heck yeah I am interested!"   I asked "Are you sure?" And she said "Absolutely positive mom"

So we are starting the fundraising. The big day is March 16, 2013. Teenzilla's fundraising goal (a'la me) is $1000. She is a little worried about raising that much. I told her- "You are young, beautiful and an amazing kid. People will donate and you will raise $1000 and make a difference. and then you will be bald and I get to rub your head!"


Our captain, Danielle! Thank you for starting our team!
I am beyond proud of her. This is HER idea. I am so amazed by her. She is mature beyond her years and has the all consuming passion that is unique to young people.

And in 5 months she will be shaving her head in honor of all the kids going though the hell of chemo.

 Damn. I am in absolute awe.





Please consider donating to this wonderful cause. St. Baldrick's is  just an amazing organization. Following are links to Teenzilla's fundraising page, and our Team, Donna's Good Things. If you are in Michigan, consider joining us- as a shavee or a volunteer! Look for St. Baldrick's events in your town too!
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Teenzilla's fundraising page

Shave your head!

Team Donna's Good Things

Danielle Bare Team Captain

Teenzilla's Mom