A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for October, 2011

Got YOU SeniorMadness!

Grace: A Child's Intimate Journey Through Cancer and Recovery

SeniorMadness is trying its best to keep me far from the Land of Blogging for Childhood Cancer. Whenever a week goes by without writing a post, I feel badly because I know that childhood cancer continues its destruction.  With everything in me, I need to do all I can to stop it. 200 children around the globe are going to die today, and 600 more are going to get diagnosed.  I refuse to allow SeniorMadness to gobble my words.  I love sharing what others are doing, and I love sharing news about advances in research. 

Yesterday, I read this terrific news from St. Baldrick’s:

St. Baldrick’s announces more than $5.1 million grant to the Children’s Oncology Group! For the first time, this year’s grant will also help COG member institutions open four specific high-impact clinical trials which they might otherwise not be able to offer their patients.

http://www.stbaldricks.org/media-and-photos/media-stories/view/headline/title/St.%20Baldrick%E2%80%99s%20Foundation%20Announces%20$5,140,000%20Grant%20to%20the%20Children%E2%80%99s%20Oncology%20Group/id/1559

Clinical trials are the breeding ground for hope for a cure for cancer. While sharing about St. Baldrick’s, I also need to mention and thank the 46 Mommas for their tireless support for St. Baldrick’s. 

Speaking of research, news from Kids Cancer Research Foundation today is about T-Cells.

T-Cell therapy involves taking out the child’s T-Cells, making them stronger, and linking them to a mouse antibody that is then injected back into the child to target the Neuroblastoma (NB) cells.

The T-Cells are natural killer cells, kind of like Pac Men. The mouse antibody portion of the combination helps identify the NB cells, thereby brining the T-Cells to the Neuroblastoma cells to be killed.

Dr. Louis, from Texas Children’s Hospital/Gene Therapy at Baylor College, just published their T-Cell trial in the journal “Blood.” Out of 19 children in 2 groups, 8 children had no disease after frontline treatment. After 3 years, not one of the 8 relapsed. Frank Kalman, executive director of Kid’s Cancer Research Foundation, reports, “Numbers like this don’t exist in NB (neuroblastoma) research.”

Continuing on the subject of research, I want to tell you about a very fun activity coming up this weekend to help support CureSearch.  There is a very brave boy named Sy Sherman who has inspired his Aunt Rachel to “Kick It” into high gear to fight childhood cancer. If you live in the San Francisco Bay area, please check out this great event that will take place on Saturday, October 29th.

 http://www.kick-it.org/events/kicking-cancer

Finally, I want to share a petition. (You know how much I love sharing easy, clickable ways to be an advocate for childhood cancer!)

https://wwws.whitehouse.gov/petitions#!/petition/keep-kids-alive-allocate-more-funds-towards-childhood-cancer-research/8ZnnxNgw

Click, click… nice… way to go!!!

And you, SeniorMadness… hee hee, got you  this time!

You "Kick It" Sy!

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My love to you, Carol Burnett

Grace: A Child's Intimate Journey Through Cancer And Recovery

Yesterday, Mom and I traveled to Santa Barbara to help the Teddy Bear Cancer Foundation sell raffle tickets for their Fall Fundraiser at the Lobero Theater.  Mom and I worked as a team;  I became quite bold in asking people if they would like to purchase raffle tickets! I believe I even cracked the “toughest nut” there! If you are scratching your head and wondering why the Lobero Theater sounds like a familiar name, it is because it is the same Lobero Theater I write about in Grace … the pageant location.

It was one of those spectacular Santa Barbara days when the ocean sparkled while the majestic mountains gazed loving down upon the brilliant expanse. For as long as I have known about Teddy Bear Cancer Foundation, they have always had a Fall Luncheon for their big fundraiser. This year was different. This year, Teddy Bear planned an evening of comedy to honor Carol Burnett.

Now, I need to give you a little background. My mom is one of those rare people who are never excited about celebrities. Her “celebrities” are children with cancer and those who help them. But—when she heard that Teddy Bear was honoring Carol Burnett, she lit up like a Christmas tree and began bubbling over with joy and laughter. She told me all about Carol’s show that she watched growing up and how Carol’s humor is like no others. My mom absolutely loves Carol Burnett!

When the big screen dropped down across the stage last night, and clips from Carol’s show began playing, I saw exactly what Mom was talking about. When Carol stepped to the podium to speak, I felt exactly what Mom had spoken of. Carol’s heart is huge. I say this not just because she helped Teddy Bear raise a lot of money to help families in need, but because she has a genuine love for her fellow humans. Something tells me this is why Carol’s humor is the absolute best ever, because of her tremendous care for those around her.

I learned something else about Carol last night. Carol lost her daughter, Carrie, to cancer.

It must have been very difficult for her to be there last night. I am grateful– extremely grateful– to Carol Burnett. I know firsthand how vital it is for us to support foundations like Teddy Bear. They helped save my life when I was imprisoned in the darkest pit imaginable. With their help, I received the help I needed to heal.

I want to thank everyone who attended last night, everyone who purchased raffle tickets (!), and I want to thank Carol Burnett for providing a beautiful bouquet of hope for children fighting cancer.

Carol… you have my love and deep respect forever.

Laughter is outstanding medicine for life!

http://www.youtube.com/watch?v=4bJoEfjHbvc&feature=related

http://www.noozhawk.com/article/100411_teddy_bear_cancer_foundation_fundraiser_to_honor_carol_burnett/

Let There Be Grace

Grace: A Child's Intimate Journey Through Cancer and Recovery

Do you ever have days where your emotions are mixed with joy, sadness, and every kind of emotion in between?  I can’t help the tears in my eyes right now, or the way they billow and bulge until they plop onto the desk in front of me.  I heard yesterday what I have been hoping is not.  I heard my friend Soozie is near the end of her life.

Soozie is not a child.

Soozie is young—way too young to leave this world, to bring her brilliant spirit with her.  Although I have only known her a year and we have never met face to face, I know Soozie will be a part of who I am for the rest of my life—whether she is here, or with our Father in Heaven. 

I first met Soozie when she sent me a very polite FaceBook message saying that her loving brother, Si, had bought her my book.  I believe Si was the very first person in his country to buy it! Soozie, or Susan at the time, told me about how her brother is her caretaker as she is fighting cancer. Ever since, I have delighted in her messages.  Every time I don’t hear from Soozie for awhile, I know she must be fighting.

After a long pause in her messages this past spring, Soozie sent me news I will treasure and truly cherish for the rest of my life. Do you know what Soozie did? Soozie loves horses, and she named her horse’s newborn miracle Grace!

This is Grace! Thank you Soozie.

Usually, I write about childhood cancer. Today is different.

Today I give thanks for life and for a friendship I will always have inside me– in this life and the next.

I love you Si.

I love you Soozie.

Thank you for helping me learn about Grace.

Circle The Wagons: Do We Truly Care For Our Young?

Grace: A Child's Intimate Journey Through Cancer And Recovery

There is a part of me that aches all over, knowing this is the final day of Childhood Cancer Awareness Month. I don’t want it to end.  Each year, as September arrives, I feel encouragement and hope that this, this will be the year that awareness of childhood cancer will take a giant leap. Half-way through this month, I was still looking for Gold Ribbons. The only Gold Ribbons I have seen are the Gold Ribbons on the profile photos of my Facebook friends—childhood cancer families. I have seen quite a few pink ribbons this month making an early appearance… kind of like the stores display merchandise before the holiday is anywhere in sight.

Forty-six children are diagnosed with cancer each day in this country.  Less than 3% of funding goes to fight childhood cancer. Seven children die each day in our country. There is no known cause. There is no known prevention.

How do we live amidst this death and destruction of children without rising up? I have learned the most about childhood cancer not from books, or from doctors, nor even from my own experience. I have learned the most from listening to families of children who have fought. They have a way of seeing straight through rubble to what is truth.  The truth is, we need to act swiftly and strongly to give to research.

May I offer the insight of Mr. Tom Nunn:

“Pink is popular for many reasons and justifiably so. It deserves research and funding for a cure but so does Gold for Childhood cancer. “If a coast guard helicopter was called out into the ocean to rescue ten people on a sinking boat, one of whom was a child, you know that he or she would without a doubt be the first one in the basket up to the helicopter. So why then does that same human response not apply here with Childhood cancer? Let me tell you why, it is because not enough $$ can be made by big pharmacy to invest into the medicine. OUR CHILDREN DESERVE MORE DAMMIT! We are letting them sink on a boat bobbing in the ocean of Childhood cancer.”
                                                        ~Tom Nunn, Max’s father

Not enough $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$ can be made developing new treatments for children with cancer. Not enough money can be made off sick children to justify developing new, less toxic treatments.

I am sorry, but I find this sick!

I pray for an Awakening. 

Surely we cannot wait one more day to do something— anything— everything– to help stop childhood cancer.

Today’s suggestion of how you might help save a life…

Please give blood.

I had the opportunity to speak today at United Blood Services. I read the part of my book where I describe my first transfusion. I looked up after reading my five minute excerpt to glimpse at my mom in the back of the room.

She was wiping her tears.

Someone saved my life… and you can save someone else’s.

http://www.youtube.com/watch?v=87Y0lzZ9WY8

When our Awakening comes, we won’t need to concern ourselves with Gold Ribbons or what they stand for. We will ,naturally, without a thought to the cost, Circle-The-Wagons Around Our Young-In-Need.

This is the World I dream of Awakening to and the World I am working for.

Jamie Rendall lived to be 5

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