Cure Childhood Cancer

CURE Blog


November 6th, 2008

Tom Glavine Has A Rude Awakening As He Talks About CURE Childhood Cancer

Atlanta Braves Pitcher Tom Glavine once again went to bat for CURE Childhood Cancer when he shared some breakfast talk recently with Christopher Rude, morning announcer on 680 The Fan, Atlanta’s Sports Station and the local ESPN affiliate. He and “Rude” talked about baseball and the launch of Tom’s charity wine, Cabernet Glavignon, and how pleased he is that the proceeds from the sale of the full-bodied vino go to CURE Childhood Cancer to fund vital pediatric cancer research. Tom and his wife Chris continue to tirelessly donate their time and money to assist CURE in its primary goal to support research here in Atlanta and ultimately find a cure for childhood cancer.

Click here to listen in on Tom and Christopher’s conversation and find out what it means to Tom to support CURE Childhood Cancer.


November 6th, 2008

The First Sam Robb Fellow – Dr. Tanya Watt

Friends,
Thanks to your support over the past year with the loss of Sam, we have established a Named Fund with CURE Childhood Cancer.  The purpose of the Sam Robb Fund is to support one of two Pediatric Research Fellows at the EMORY/Children’s Healthcare of Atlanta.
Saturday evening, June 21st,  we introduced Dr. Tanya Watt as the first Sam Robb Fellow to our family and friends.  Many of you joined us for an evening of Remembrance and Resolve.

We truly appreciate you support and will continue to need your help to support our battle through research to find better treatments to battle childhood cancer.
Please Save the Date for scheduled events
·         The Quiet Heroes Luncheon – Saturday, September 20th
·         The Sam Robb Memorial Golf Tournament – Sunday, October 12th
·         The Sam Robb Holiday Classic  Basketball Tournament – December 27-28-29
Information on the above events and The Sam Robb Fund are under the Name Funds portion of CURE Childhood Cancer website: www.curechildhoodcancer.org All contributions to CURE Childhood Cancer please note: The Sam Robb Fund are tax deductible.
We remembered how much we missed Sam and cannot believe one year has passed.  We are comforted by all the friends that are supporting our family in many ways.
We continue Fightin Till the Last Breath. Thank you

Annamarie, Sam, Elizabeth ,Caroline and Katherine Robb


November 6th, 2008

Childhood Cancer is Cureable in your Lifetime

The term ‘cancer research’ can be amorphous.  It certainly has a positive connotation.  It suggests commitment and progress toward a worthwhile goal.  Being amorphous though, it’s hard to get your arms around it.  It’s tough, especially for lay people, to understand the nature and scope of the research.  Moreover, it’s tough to hold it accountable.

Donating to a cause for cancer research should not entail a leap of faith – faith that your donation will be used in a way that delivers results – for the children.  Unfortunately, research efforts for cancer research have gotten the short end of the stick.

Less than 2% of federal funding for cancer research is directed at solving cancers that impact our children.  Childhood cancer is a different disease than adult cancer.  The drugs and treatments developed for adult cancers are not necessarily applicable to children.  They should be.

Let’s look at some statistics.
•    Nearly 30% of the U.S. population is under the age of 20
•    In this age group, 12,400 are diagnosed with cancer each year
•    One in 300 boys will develop cancer before the age of 20
•    One in 333 girls will develop cancer before the age of 20
•    The incidence for cancer is greater among white children than for children on all other ethnic groups
•    Incidence of childhood cancer peaks in the first year of life
•    Incidence is higher for children under five and for those ages 15-19 (lower for ages 5-14)
•    Cancer is the most common disease-related cause of death for ages one to twenty

The good news is that progress is being made.  Over the past ten years, the Children’s Oncology Group (COG) has reported:

  • Decreased childhood cancer mortality by 25%.
  • Improved survival of acute lymphoblastic leukemia from 70% to 80%.
  • Improved survival of acute non-lymphoblastic leukemia from 35% to 50%.
  • Improved survival of the most common form of non-Hodgkins lymphoma from 70% to 90%.
  • Improved survival of widespread childhood neuroblastoma from 10% to 45%.
  • Reduced by 50% or more the need for radiation therapy for the following groups of patients, thereby reducing risks of long-term effects of radiotherapy:
    • Acute lymphoblastic leukemia,
    • Infants under 3 years of age with brain tumors, and
    • Adolescent females with Hodgkins disease.
  • Established efficacy of 8 new anti-cancer agents and combinations of such agents for the first time in pediatric cancers.
  • Shortened the treatment time for the most common form of non-Hodgkins lymphoma, Hodgkin’s disease, and all forms of childhood acute non-lymphoblastic leukemia by 30%-50%.
  • Successfully evaluated several agents that reduce the side effects of pediatric cancer treatment (i.e. G-CSF, Dexrazoxane).
  • Published recommendations for long-term follow-up care for all cancers of children and adolescents.
  • Established the first broad effort to develop and evaluate treatments for cancers common to adolescents and young adults, and demonstrated the superiority of pediatric treatment protocols over adult treatment protocols for several cancers of young adults.

While the progress over the past ten years is motivating, there is so much left to be done.  You can see from the tremendous progress that a cure for childhood cancer is achievable within our lifetime.  More importantly, a cure for childhood cancer is achievable in YOUR lifetime.
Please invest in the cure.  Your donation will generate results.

Don Campbell
President/CEO, Virtual Management Technologies
CURE Childhood Cancer Board Member


November 6th, 2008

A Discussion on Drug Trials

I would like to talk about drug trials.  When I was first diagnosed, my parents were told that I had 3 mos to live and only 10% of the children diagnosed with Aplastic Anemia survived and most of them survived by having regular transfusions.  When my parents were presented with a medical option that was a phase I trial, they jumped at the chance to do something, to do anything other than just sit and wait for me to die.

They were given two options:  One at UCLA medical center and another in Switzerland. These were the only two places that were conducting the trial using a newly developed drug called ATG.  When I was accepted into the drug trial at UCLA, I was the only child on the trial and only one of 6 children being put on the medicine.   I know now that I was a guinea pig and that the doctors had no idea what dosage to use on me, if this medicine would work for me, or if would kill me.  The doctors had to continually stop the medication because I had reactions that could have been from the meds or they could have meant infection.  There were many unknowns in the process.  BUt the long and short of it is that I benefitted from being allowed to be on a phase I trial of a medication that was previously only used on adults.   Had I been diagnosed 3 years earlier, there would not have been any medical options for me.  I would have been put on Prednisone and the doctors would have hoped for the best.  Today, ATG is one of the standard protocols that aplastic anemia patients try when they are diagnosed.  It has been used for the past 28 years and has had great success.

Had I not been accepted into the program at UCLA, my parents would have taken me to Switzerland because it was the only hope that they had to save me.  Parents will go to the ends of the earth to save their children and my parents would have done anything to have the opportunity to get into this trial. I remember that I was initially rejected from the UCLA program and after a lot of desperate talking and offers on my parent’s part to pay the bill, I was accepted.

When I think back on what my mom and dad were feeling and the desperation that they must have been hiding from me, I get teary eyed.  I can’t imagine facing that with one of my own children now.  Having any kind of medical option is most certainly giving a family HOPE and more than that sometimes, a CURE and a chance to share so many more years with your child and perhaps even your grandchildren.

Lauren Gearon
Childhood Cancer Survivor
CURE Board Member


November 6th, 2008

A Note About Moms

With Mother’s Day passing, an entry on the most important people in our lives seems to be appropriate and belated! Many of us who are married have been blessed enough to find our perfect spouse, our soul mate, our sincerely better half.  And many of us experience the pleasure of watching these women be loving, caring, mothers to our children.

Not too many, though, are able to see the depths of a mother’s love for her children as I have seen through my wife and other mom’s of children with cancer.  The inner strength and endurance that our “Quiet Heroes” summon indeed inspires awe.  I always knew Dayna to be the mom I had dreamed of for my children; but without our experience of losing our daughter to cancer, I never would have known the half of how deep her love and compassion and strength and faithfulness runs. Certainly, there are days that challenge every mom and family; however quite remarkably, it is this dormant beauty of a Mom’s love for her children and family shining through the dark days that reveals the complete miracle that we call Mom  – or mommy or MaMa as the case may be.

I am sure I am not alone in that I often don’t tell my bride how our experience has made me fall in love with her all over again; maybe she will read this Blog….Watching children battle this disease is horrible; and needless to say, if we never had to watch another child fight this battle, no argument here.

But we do learn so much about ourselves in the face of tribulation.  Quite simply and to the point, your novice blogger learned how much more special his wife is than he ever could have imagined.

HAPPY MOTHER’S DAY TO ALL AND THANK YOU!!

Alan Thomson
Father of Hayley Thomson, Feb 2003 – Dec 2004
CURE Board Member


November 6th, 2008

Kilimanjaro – The Roof of Africa

Saturday, January 12, 2008 is a day that will live with me forever.  That day I successfully climbed and summited Mount Kilimanjaro in Tanzania, Africa. “Kili”, as it is affectionately know as, is one of the famed “Seven Summits,” and reaches 19,340 ft. This climb, which had been on my “Life Goals List,” was completed with the assistance of a professional outfitter, nearly forty porters, fifteen strangers, and my close friend, Frank Salazar. Our six day hike took us up the Marangu trail, a non-technical but strenuous route, which crossed through four climatic zones: rain forest, moorland, alpine desert, and nordic ice caps. At the top of the mountain, which lies a few degrees south of the equator, the temperature dropped to a low of 5 degrees Fahrenheit – and these were the favorable climbing conditions: no wind, rain or snow. Each year roughly 20,000 people attempt to ascend Kilimanjaro, with a 50% summit rate. In celebration of my 40th birthday this past year, I decided to attempt this life long goal and dedicate my climb to CURE and the many children who have been stricken with childhood cancer.
My trip also included a scenic safari in the Serengeti Plains and the Ngorongoro Crater. But it was my summit night experience that was by far the pinnacle of my African journey.

My Summit Night, January 11th, 2008

After four days of casual hiking, acclimatization, and daily doses of Diamox (the wonder drug for mountain climbing that reduces the risk of high altitude sickness), our team of sixteen nervously rested in Kibo Hut (15,463 ft.), the final base where nearly all Kili summit attempts begin. We were instructed to sleep, as best we could, until 10:00 pm, then gear up, and meet outside at 10:45 pm. I can assure you, nobody slept that night.
Our group was unique. Even though we were all Americans, we came from different parts of the country, were at various stages in our lives, but shared a common goal and sense of adventure.  We began our trip as complete strangers, but quickly bonded and became a trusted team.
At 11:00 pm, our fearless leader, Peter Mato, gathered us for some final thoughts and instructions. We formed a circle, held hands and he lead a prayer. With headlamps illuminated, we started our trek into the darkness of the African night. I am amazed by the night sky and have never seen so many stars. For many, including myself, this would be the most challenging and rewarding 24 hours of our lives.
Trouble began halfway up the mountain. Taking our first break in a Hans Meyer Cave (16,900 ft.), shivers shot through my body like a bad flu. To make matters worse, I was on the verge of projectile vomiting. As I looked around, others seemed to fair better than I did. Knowing that I needed to stay hydrated to avoid more severe stages of altitude sickness, I attempted to drink a “power beverage”, but my body rejected it. I wondered if I would be the first to crack and revisit my last meal. Peter walked around and checked each climber, making sure they were ok to continue. As he came to me, I put on my best front and gave him the two thumbs up. Peter smiled, and said I was doing great. With that done, the group departed for our next target, Gilman’s Point (18,711 ft.).
As we made our ascent to Gilman’s, I found my rhythm: take five steps, stop; take five breaths, start; repeat. In the distance, I see Peter’s shadow. He is setting the pace. He sings African nursery rhymes that help the team focus on the task at hand. Having climbed the mountain over 630 times, he feels no pain. In contrast, my every step gets harder and harder. I repeat my own personal chant: (1) I have a great leader; (2) I have a great team; (3) I can see myself reaching the summit; (4) the weather is perfect; (5) I have prepared for this; and (6), pole, pole, which means slowly, slowly in Swahili.
Looking down the mountain, five groups of headlamps are evenly sprawled along the nearly 90 switchbacks we have made thus far. The world is well represented on the mountain. Teams from Japan, Australia, and Germany continue to trek, trying to reach the roof of Africa.
As the sun begins to break across the horizon, we finally approach Gilman’s Point. I look across the plains of Africa, and I’m amazed at how high we are. No picture can capture this vista. Bright red rays of sunlight reflect off the many glaciers that circumvent the volcano’s caldera. It is a beauty that can not be put into words.  Miraculously, the whole team makes it to Gilman’s. With the sun now shining, my spirits improve and I get a second wind. To reach the true summit, a two hour push of rolling paths and a series of false summits is still required. Five of our team members stop, satisfied with their crowning achievement to stand at Gilman’s Point. The rest of use break for 15 minutes and begin our final push.

30 minutes after leaving Gilman’s, I notice a stark change in the disposition of my remaining team members; smiles have turned to faces of anguish and pain. The team that stuck together, and motivated each other to reach Gilman’s Point, slowly splits apart. Kilimanjaro has become the overlord. Each climber must now find their own way to the summit. Silently I walk. I am energized by my complete dependence on myself. Periodic emotional surges bring me to the verge of tears and elation. I am not going to give up; I am actually going to summit this mountain!

Fellow climbers hike past me in both directions. One woman is completely disoriented and unattended. She is suffering from High Altitude Cerebral Oedema or HACE, a climber’s worst nightmare. I wonder how she will get past some of the technical sections of the decent, where one misstep can lead immediately to your death. I am powerless to help her. Each year 2-10 people die in attempt to tackle the snows of Kilimanjaro. Many are porters who live under these adverse conditions year around.
Suddenly, I see my goal in front of me. The famous sign that we all seek to touch and photograph is in my grasp. Once I get there, it is bitter cold and windy. Having brought my camera, I am too tired to take pictures. I ask a stranger who looks terribly fatigued, if he will kindly take some photos. I dig into my day pack, roll out my CURE banner and pose. Too exhausted to take my hat and balaclava off, let alone smile, the camera clicks. I am mentally and physically drained, but I have finally reached my goal.

Why Did I Climb Kilimanjaro? Why CURE?

10 years ago, during a routine physical, my doctor discovered quarter-sized tumor on my thyroid gland. After the ultrasound, it was determined that the tumor looked cancerous and an operation was scheduled. As I sat in solitude during those days, I asked God for a second chance.  If given, I would live each day with passion and attempt to make some kind of difference with my life. Two weeks later, I woke up from the operation in a daze with my surgeon standing over me.  He informed me that the surgery was a success and the tumor was not cancer. I committed myself to find a path to give back some day in some way. Finding such an expression has not been easy.
Today, I stand in awe at children living with cancer.  The disease confounds me; their courage inspires me. What they and their parents have to endure each day during their constant battle against the disease dwarfs any personal challenges I have faced in my life.
Climbing and reaching the summit of Kilimanjaro has given me a chance to express myself. My summit was nothing more than a celebration of life. By making this trip I have finally discovered a personal path for giving.  I am no expert in childhood cancer, but these are first steps.

Thanks & Future Challenges

I am lucky to have a wonderful wife and 4 great kids. They have and will continue to support me in my efforts to help others in need. It is as much a sacrifice for them as it is for me.
I would also like to thank everybody, friends, family and complete strangers, who contributed to my climb through their time, support and donations.
Already, I am thinking to my next challenge. Perhaps I will bike across the country or climb another mountain. I have not given it serious consideration, since I am still reveling in my Kilimanjaro experience.  Whatever the next adventure is, I hope to raise more money and greater awareness for CURE Childhood Cancer.


November 6th, 2008

A Successful Lauren's Run!

This will be a short entry, but quite relevant to the cause at hand!  This past weekend, the dedicated staff at CURE and related families and supporters hosted a wonderful morning of exercise, fun, food and friends.

In a previous post titled “Imagine a World Without Childhood Cancer”, we referred to the impact childhood cancer can have on communities, and the necessary and important role community plays in healing families from this type of storm.  Lauren’s Run provided such a beautiful picture of this unity, hosting communities of friends, colleagues, neighbors, and classmates supporting both survivors and lives lost.

The day also provided a precious reminder of the joy and light that children bring into our lives.  In this case, their light shown through a fundraising run / walk / picnic with Frisbees, balls, climbing walls, and slides — all the things kids would enjoy.  This magical quality that children possess, though, is not restricted to the fun circumstances we experienced this weekend.

Indeed the joy, laughter, determination, and caring hearts of children carry them and their families and their communities down some of the most difficult paths life presents.  In a pediatric cancer center, IV poles become skateboards; hallways become bowling alleys; hospital doors become canvases for the rooms’ inhabitants; nurses become best friends.

How precious our children are…making the sunny days brighter and hiding the nights with their smiles…Thanks for visiting our BLOG, come back often.
__________________

Alan Thomson
Father of Hayley Thomson, Feb 2003 – Dec 2004
CURE Board of Directors


November 6th, 2008

Imagine a World without Childhood Cancer

First a warm welcome for those of you new to our blog.  We are delighted to have you and thank you for visiting this site.  We hope you come back often!

You may note the words of inspiration on our homepage:  “Imagine a world without Childhood Cancer.”  This goal is what we all work for and work towards. The hope held in this mantra provides us the strength to keep going during the toughest of times.

It occurs to me, though, that the challenging aspect of imagining such a world is that first we must imagine our world with childhood cancer, which is not an altogether easy task. When I was growing up, my mother worked as a fundraiser with St. Jude Children’s Research Hospital.  I am embarrassed to report that I remained oblivious to the world that these families and children were entering and enduring. Frankly, before my daughter was diagnosed with AML (an aggressive form of leukemia), our family was blind to the devastation that cancer wreaks on families.

Recently, downtown Atlanta was devastated by a tornado. In many ways, childhood cancer is a similar type of storm.  We are all aware that these types of storms exist, and our hearts sink for the families whose homes have been destroyed and whose loved ones have been lost.  But tornadoes are targeted in their impact, often devastating one side of a street, while leaving the other side untouched.  As a result of this “randomness,” we may not internalize the completeness of these storms’ devastating impact on families — at least not beyond an initial emotional reaction. The reality is that these storms impact families and communities for years beyond the two days of news coverage that they receive.

Similarly, childhood cancer hits families in an unpredictable and random way. Its impact is long lasting. It takes a community to rebuild a family devastated by this disease.  In the wake of childhood cancer lie destroyed careers, strained relationships, damaged balance sheets; a doubting faith, and far too often – the lives of our precious children.

NOW, with full understanding of its horror, let us recognize the magnificence and beauty of a world without Childhood Cancer.

Alan D. Thomson
Father of Hayley Thomson, Feb 2003 – Dec 2004


November 6th, 2008

The Rockin' Racers are off and running for their Lauren's Run team

On Sunday, May 4, we are leading a team in a very important event – Lauren’s Run, benefiting CURE Childhood Cancer.  As many of you know, childhood cancer has touched our lives closely…and has changed our lives forever.

Lauren’s Run is an event that raises money for life-saving pediatric cancer research.  Our team, the Rockin’ Racers, is back for the second year.  We had tons of fun last year as a team, and we also are proud that we raised a lot of money for this very precious cause.

This year, our goal is to raise $5,000.  Will you help us?  There are too many children fighting this disease, and they need HOPE that better treatments and CURES are closer today than they were yesterday.  That is what the Rockin’ Racers is all about…bringing hope to those children.

To learn more about our team, please visit our webpage – www.firstgiving.com/rockinracers.  If you’d like to support our effort, you can make a donation by clicking one of the links next to the picture on my page, a link to which is below:

Thanks very much for your support!  It means the world to us.

Your friends,
Ryan and Brandon Connor

*** About donating online ***

It’s very easy to support the Connors online – just go to their page at the following web address and click “Give Now”

Web Address: http://www.firstgiving.com/rockinracers

It takes a matter of minutes, is totally secure and you can leave a message with your donation too.


November 6th, 2008

CURE Launches New Video

CURE Childhood Cancer launches a new video on the importance of supporting CURE through the eyes of the doctors doing the research on a cure and 3 families that have been affected by childhood cancer.  Click here to view.


  • SOMETIMES YOU GOTTA FIGHT

    Musicians VANN and Ryan Burton's song "Sometimes You Gotta Fight" is available now! Click here to watch the video and click here to download. All proceeds are donated to CURE.

  • YOUTH COUNCIL

    Rising High School Sophomores are invited to apply for CURE's Youth Council. Applications are due June 30, 2012.  Click here for more information.