A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for September, 2010

Alicia Keyes Tweets for Cancer Kids

The very first thing I want to tell you about today is how the Facebook site requesting Oprah to have a show about childhood cancer has continued to mushroom in growth. One strategy the page originators are using now is to ask celebrities to tweet about the page and ask their followers to “Like” the page too.

I have always loved Alicia Keyes music. Now, I love Alicia Keyes– she helped to fuel this movement by opening her heart and using technology to make good things happen. Please go out and buy her music!!!!!!!!!!!!!!!!!!!!!!!!!!

For all you NASCAR fans out there (brother Nicholas, are you listening?) this is what Jimmie Johnson’s foundation is doing for children with cancer:

http://www.jimmiejohnsonfoundation.org/Events/Samsung-Helmet-of-Hope/Vote-Samsung-Helmet-of-Hope-For-More.aspx

And just one more link for you– telling about an amazing little girl named Layla Grace who lost her battle with cancer. Her tremendous spirit shines through this foundation to honor her gift of inspiration to all of us:

http://www.facebook.com/pages/Layla-Grace-Childrens-Cancer-Research-Foundation/111320672232355?v=wall

We have so much to do, and so many reasons to do it.

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Tommy Hilfinger and Alex Garfield PSA

It makes me happy to see that many people are reading my blog.  This isn’t because I have a secret ambition to be Master Blogger of the Universe, but because it means people are learning more about childhood cancer. I know I’ve been a little tough on you lately, expecting you to click “Likes” on Facebook pages and sign petitions and take surveys. I am really, really grateful for your participation!

Today, I will just do a little reporting and give you a tiny break till tomorrow:)

Fashion has never been one of my interests, but it just became an interest when I saw what Tommy Hilfiger and Alex Garfield have done to help raise funds for childhood cancer research– it’s called “Connor’s Heroes.”

http://www.youtube.com/watch?v=re17LbQtH4k

When I ask, “Is anybody out there,” I hear Tommy and Alex say, “Me!”

There is one other person to tell you about. I met a beautiful woman named Katya last Saturday at the Children’s Miracle Network event who had painstakingly, lovingly, and artistically created a work of needlepoint that she donated for the live auction. I cannot even imagine the time and energy she devoted to this brilliant artwork, and I imagine that it must have been very difficult to part with it. Whenever we put our heart and soul into something we make, it seems like it becomes a part of us. She must have felt like she was giving a piece of herself. Well, it is people like Katya– who give from their souls– who have made it possible for me to be living and breathing today. That she would care about sick children who are complete strangers is something we can all aspire to. That she would give such a big piece of herself… this will make me a better person.

If you would like to see her blog and photos of her incredible needlework:

http://astitchingtime.blogspot.com/2010/09/rancho-vino-event.html

Thank you Katya, Tommy, and Alex…

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Survey… how much do you know?

Childhood Cancer

Childhood Cancer

That Facebook page that I have told you about asking Oprah to do a show on childhood cancer has grown to over 14,000 “Likes.” What is truly heartbreaking is that people have posted story after story after story of children with cancer. As I read the stories, it touches me deeply to know that many families who have lost a child to cancer have decided to establish foundations to help other children. What a truly amazing feat to be able to turn their horrendous grief into a sparkling gift for some child who is suffering greatly. I love this so much! To know that this feat is even possible makes me believe I can find hope in the darkest of situations.

Now, I have a quiz for you so you can learn how much you know about childhood cancer… and how much you don’t know:)

http://www.surveymonkey.com/s/XQGLLQS

On this 14th day of National Childhood Cancer Awareness Month, I ask you to take the time to learn just one thing about childhood cancer. I ask you to go to the Oprah! Please do a show on childhood cancer! site and read about the heroic children and their incredibly supportive families. For today, just learn.

Oh, there is one more thing you can do… please “Like” this Facebook page as well! I know the author personally:)

http://www.facebook.com/pages/Grace-A-Childs-Intimate-Journey-Through-Cancer-and-Recovery/149423578414076

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Coast Hills, John, Danny and St. Jude’s

The Coast Hills Foundation fundraiser for the Children’s Miracle Network and Cottage Hospital was a lot of fun and the best part of it all is that they raised quite a sum of money! Gosh, they did an incredible job organizing this event! It made me happy to see so many people having fun and at the same time showing their commitment to help. I posted on my Facebook page:

 The three components of a successful fundraiser: alcoholic beverages, a speech that makes you cry, and expensive live auction items hahahhahahaha =D

Thank you Coast Hills Foundation!!!!!!!!!!!!!!!!!!!!!

You know how sometimes the timing of things in life make you shake your head in wonder? Well, one of those happened to me yesterday. I read the Saturday morning paper and it said that John Schneider would be playing at the St. Jude’s “Win A Home” drawing house at Trilogy in Nipomo for the benefit of first responders.

Let me connect the dots. John Schneider, along with the Osmonds, helped to create the Children’s Miracle Network. He was playing at the St. Jude’s Drawing Home at Trilogy in Nipomo yesterday, and a mere stone’s throw away, I was speaking at another event to help raise money for the Children’s Miracle Network.

I couldn’t let the opportunity to thank Mr. Schneider pass by, so Mom and I stopped at the St. Jude’s house on our way yesterday. It was great to have a few minutes to enjoy his soothing voice before we headed to our event. I didn’t think I would have a chance to say thanks in person, so I had prepared a card and slipped it into a copy of Grace: A Child’s Intimate Journey Through Cancer and Recovery, and left it with someone in charge to give to him when he was finished singing. I hope he knows how grateful I am that he cared enough many years ago to put time and effort into raising money for children’s hospitals.

There is someone else who is very well known for his tireless efforts on behalf of sick children. St. Jude’s Children’s Research Hospital is one of the world’s premier children’s research hospitals, and Danny Thomas will always be one of my most respected heroes for the way he so tenderly created this place for children with catastrophic diseases. When St. Jude’s opened in 1962, cancer was a death sentence. Cure rates have increased tremendously because of their ground-breaking research. Giving to St. Jude’s Children’s Research Hospital is one more way of honoring National Childhood Cancer Awareness Month. I honor each one of you who is choosing to choose one of these opportunities to give! I am deeply grateful.

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Will Oprah Respond to over 10,000 Requests?

As of today, there are over 10,000 “likes” on the newly created Facebook  page asking Oprah to do a show on childhood cancer.

http://www.facebook.com/pages/Oprah-Please-Do-A-Show-On-Childhood-Cancer-Our-Kids-Need-Your-Help/156632377680799?ref=ts

If you would, please “like” the page as well. Please take a moment to browse the stories of some incredibly brave children. There are also links on the page to organizations who offer help for pediatric cancer research. St. Baldrick’s Foundation is the world’s largest volunteer-driven fundraising program for childhood cancer research. I understand that there will be some moms appearing on Stand up to Cancer tonight who shaved their heads to raise money for St. Baldricks’s and childhood cancer research.

Why all this talk about raising awareness and research? Because a cure is within our reach. If a cure is within our reach, we need to start reaching now– and stretch as far as we possibly can! Let’s grab the cure and save children’s lives!

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The Children’s Miracle Network and Cottage Hospital

Many children who are treated for cancer are treated at Children’s Miracle Network hospitals. Cottage Children’s Hospital, where I was treated, is a Children’s Miracle Network hospital. When CMN raises funds, money collected goes directly to your local children’s hospital. Can you imagine the specialized medical equipment that it takes to treat children? Imagine how much that equipment costs.

I am blessed to have had an incredible children’s hospital save my life. Without Cottage Children’s Hospital, I would have had to travel three hours north to Stanford, or three hours south to Los Angeles. The doctors, nurses, and the entire staff  at Cottage Hospital were outstanding.

This Saturday, I have the opportunity to tell others about what Cottage Hospital did for me. Coast Hills Foundation is having a fundraiser for the Children’s Miracle Network and Cottage Children’s Hospital, and I will speak about how Cottage Hospital really did give me a “miracle.”

http://www.cottagehealthsystem.org/tabid/1482/Default.aspx

When you support your local children’s hospital, you are helping children who will be diagnosed and treated for cancer as well as children with other serious health problems. This is one opportunity to broaden the scope of your help even beyond childhood cancer.

To find your local Children’s Miracle Network hospital:

http://www.childrensmiraclenetwork.org/HospitalSearch.aspx

I love my Children’s Miracle Network Hospital, and I love all  of those people who saved my life at Cottage Hospital even more!!!!!!!!

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CureSearch and Children’s Oncology Group

I am not quite ready to move on from CureSearch and how they support Children’s Oncology Group. I remember one of my first appointments with my oncologist, Dr. Dan, when he told us about CureSearch and Children’s Oncology Group. He was very enthusiastic about how the “Pediatric World of Cancer” shared information and how this has led to major improvements in saving the lives of children with cancer. Children’s Oncology Group is highly responsible for this. Without all of this information sharing about clinical trials, I would be living in heaven right now.

One more thing that I will always be grateful to CureSearch for is for having up-to-date, accurate, and understandable information on their website. Can you imagine how my mom must have felt when she found out that I had a huge, scary, un-nameable blob inside my chest? Dr. Dan was kind and compassionate when he strongly suggested to my mom that she should go to the CureSearch website for information (somehow he knew that my mom is a major information gatherer; something about having a child with cancer made her even more so!)  Just knowing that there was a place to go for truth was an enormous blessing to her– and to me!

http://www.childrensoncologygroup.org/

This is COG’s mission from their website:

The mission of the Children’s Oncology Group (COG) is to cure and prevent childhood and adolescent cancer through scientific discovery and compassionate care. To accomplish this mission, the Children’s Oncology Group:

  • designs and conducts clinical trials to define optimal therapy for children and adolescents with cancer. Currently, COG has more than 110 Phase I, II, and III active clinical trials which enroll approximately 5,000 patients annually, with > 70,000 patients in active follow up.
  • conducts laboratory research which will translate into more effective treatments with reduced short- and long-term side effects.
  • seeks to identify causes of childhood cancer with an ultimate goal of developing prevention strategies.
  • conducts research to improve quality of life and survivorship.
  • seeks international partnerships, when necessary, to fulfill its mission.

Guess who is in a clinical trial with follow-up care? Me.

There is a bumper sticker that I feel applies to our tax dollar priorities, and it says this:

“It will be a great day when cancer research, clinical trials, and treatment for children with cancer is fully funded– and prisoners need to hold a bake sale to pay for their medical care.”

Really???????????????????

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CureSearch Helping Children

 

 

 

Today, I want to tell you about CureSearch. The work that CureSearch has done in the past to support the Children’s Oncology Group  has very likely led to my life being saved. This is an amazing association of more than 5,000 experts in this field who are passionately dedicated to eradicating childhood cancer.

Quoted from CureSearch Website:

CureSearch for Children’s Cancer is dedicated to raising private funds for childhood cancer research for the Children’s Oncology Group, the world’s largest cooperative cancer research organization. Together, we are committed to conquering childhood cancer through scientific discovery and compassionate care.

CureSearch Children’s Oncology Group is a network of more than 5,000 physicians, nurses, and scientists whose collaboration, research and care have turned childhood cancer from a virtually incurable disease to one with an overall 78% cure rate.

http://curesearchwalk.org/htmlcontent.asp?cid=102631

CureSearch is organizing walks to raise money. Perhaps you would like to slip on those walking shoes, get some excellent exercise, and raise money to make a difference for children. At this moment, I am giving thanks for those who have supported CureSearch in the past. These people helped save my life. I intend to use this life I have been given to help save the lives of other children. Please join me and do what you can to help CureSearch keep doing their miraculous work!

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Lance Armstrong Helping Children with Cancer

The information in this link makes me very happy!

http://www.wapiyapiclassic.com/

On September 26, Lance Armstrong will ride to help Wapiyapi raise money for families affected by childhood cancer. I can imagine that Lance has his schedule packed with events– that he would take time to do this inspires me so much! I love that he realizes how important it is to help families who have children battling cancer. Not only does he recognize the truth, he actually does something about it. Yes, inspiring!

Once again, I thank Lance Armstrong for leading us in this global battle against cancer. I thank him for caring not only for adults fighting cancer, but for caring deeply about children battling cancer as well. I am joining Lance in this fight, and I invite you to join as well. Together…

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Oprah! Please Do a Show on Childhood Cancer!

http://www.youtube.com/watch?v=IgC6YKlrG9A

There is a newly created Facebook page with the title above that I would love to have all of you “like.” Even though this page was just created yesterday, there are already over 2,000 people who have joined in the request.

There is so much that people need to know about childhood cancer. I think that when children suffer, it is difficult for people to see and hear about. I understand. The important thing is, if no one looks, no one sees, no one will help and these children and families who are barely hanging on are alone in their nightmare. We cannot do this– we cannot let these children and families claw and struggle their way through the misery. Yes, it is horrible– but what we can do about this is beautiful.

It’s time for us to take off our “Fuzzy Glasses” and look at the realities of childhood cancer that exist before us. I pray that my book will do for these families and children exactly what I intended it to do… help. I want to thank this “sister” of a 2 year-old cancer patient for sharing this with me after she read Grace: A Child’s Intimate Journey Through Cancer and Recovery:

“My mom bought an early copy, and I’ve been up all night reading (and re-reading) it. It’s indescribable… it’s the first time I’ve ever read/heard of a story that was similar to that of my sister and family. Everything that you went through…. the fighting against this illness, the SURVIVING, even the depression that you went through after remission, was something that my family endured. Your detailing of treatment was what I needed, to hear in words what my baby sister was going through. She was too young to articulate her pain, and your book put into words what I saw everyday for two-and-a-half years. I thank God that she was too young to be depressed about her situation…but I wasn’t. I struggled for years, even after she was given a clean bill of health, with anxiety and depression and God knows what. Your book helped me realize that I wasn’t alone.

I just wanted to send you a message and let you know that you are really one of the most amazing people I’ve met. Seriously. Thank you for putting into beautiful words your experiences with cancer… your book is something that I’ll keep forever.”

There are so many ways we can reach out and help. What a blessing it is to be able to help!

 

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