Cure Childhood Cancer

CURE Blog


December 17th, 2010

Cobb County Friendship Club supports CURE Childhood Cancer.

CURE Childhood Cancer recently received a grant from the Cobb County Friendship Club. This club is made up of Cobb County employees who donate a portion of their salary to support charitable work in Cobb County or benefiting Cobb County residents. The grant CURE received will go to support our CURE Travel Totes which are given to newly diagnosed pediatric cancer patients. These totes include practical information and tips for families facing a cancer diagnosis as well as other items  we feel will be useful to families throughout their journeys.

CURE would like to thank all Cobb County employees who made this grant possible.


December 17th, 2010

CURE Childhood Cancer Honored by Gift from Wells Fargo At Days of Giving Event

Many Groups in Program Have not Received Support Before

CURE Childhood Cancer was honored by Wells Fargo with a $1,000 grant at the company’s Days of Giving ceremony at the Mansour Center in Marietta on Nov. 16.

The donation to (GROUP) is among contributions to 240 non-profit groups, each for $1,000, to organizations across Atlanta made at five community breakfasts.  The company began the program in Atlanta last year and in 2010 expanded it by more than a third.  Before the program began, Wells Fargo had not supported many of the groups before.

“These unrestricted dollars will allow us to continue to help the community,” said Executive Director, Kristin Connor.  “With the economy still suffering, the money couldn’t come at a better time.”

“A hallmark of Wells Fargo is local decision-making and local involvement,” said Mindy Mercaldo, community bank president.  “Through Days of Giving we’re connecting with local communities in a whole new way.”

She added that CURE Childhood Cancer was selected by frontline employees of the company for the honor.

Across Atlanta Wells Fargo has 5,000 employees and serves half of all Atlanta households.  It has nearly 200 bank locations. Wells Fargo will make a total of $5 million in contributions to some 500 groups across Georgia in 2010.

Added Mercaldo, “We know the needs continue to be great across our area, especially now.  This is a new way to help more people and more groups that we haven’t been able to reach in the past.”


December 16th, 2010

Donating Appreciated Securities to Charity

By: Mike Stanford, With Homrich Berg, an independent registered investment adviser

If you are considering a donation to CURE, consider making a gift of appreciated stock or mutual fund shares instead of a cash donation.  In addition to the satisfaction of contributing to a cause you believe in, gifting appreciated property may provide meaningful year-end tax savings and other long-term benefits for your financial situation.

Tax Benefits

Charitable contributions of appreciated securities provide income-tax advantages in two ways:  1) through a charitable deduction – generally for the fair market value of the securities at the time of the contribution, subject to certain tax law limits and, 2) through capital gains tax savings – you are not taxed on the capital gain that would result if you sold the property.

For example, let’s say you own shares of stock worth $10,000 and that these shares were bought over a year ago for $7,500.   If you sell the stock, you will have long-term capital gain income of $2,500 which will be taxed.   However, if you donate the stock to charity, you may claim a $10,000 charitable deduction and avoid paying capital gains tax on the $2,500 of appreciation in the stock.  The charity will receive the stock donation and sell it immediately for $10,000, generally with no capital gains tax because of the charity’s tax-exempt status.

In order to receive these benefits a couple of important points:
1)     The stock must be long-term capital gain property, or stock you’ve owned for more than one year or stock you inherited.
2)    If the stock has been held for less than 1 year, your charitable deduction is limited to your cost basis rather than the stock’s fair market value.
3)    It’s important to consider the type of charity to which the gift is made. While a gift of appreciated stock to a public charity generally allows the donor to take a deduction for fair market value, the same gift to a private foundation may result in a charitable deduction that is limited to your cost basis.

Other Considerations

While donating appreciated stock can lead to tax advantages, think twice about giving stock that has lost value since you bought it.  A better idea is to sell stock that has lost value, realize the capital loss for tax purposes and donate the proceeds of the sale to the charity.    If you simply donated the stock, you would receive credit for the charitable deduction but couldn’t deduct the capital loss.

Making the Transfer

Most brokers and mutual fund companies will directly transfer shares to a charity for you. However, they normally require the charity to have a brokerage account in order to receive the shares.  Check with your charity before you initiate the transfer. If the charity doesn’t have an account with an independent advisor or brokerage firm, you should discuss your gift and encourage the charity to open an account to receive it.

If you have an actual stock certificate for the amount you want to donate, you can sign the back of the certificate but make sure you hand deliver it to your charity.   If your stock certificate is for more shares than you want to donate, you can ask your broker (or the charity’s broker) to have the stock certificate reissued in two or more smaller certificates. You can transfer one of these new certificates to the charity.

Probably a better idea in order to protect yourself is to execute a letter of authorization describing the stock and donation amount (your broker or charity can provide a template). Then, send the unsigned stock certificate to the charity by registered mail in one envelope and the letter of authorization in another.

Before you make a gift of stock or mutual funds, especially for a significant gift, talk to your professional financial advisor to determine how such a gift may affect your overall financial plan.

For instructions on making a gift of stock to CURE Childhood Cancer, click here.  For any further information, please contact Shelley Howard at 770.986.0035 ext. 21 or at shelley@curechildhoodcancer.org


December 16th, 2010

Weaving Together a Cure for Cancer: Spotlight on CURE Funded Researcher Todd Cooper

Dr. Todd Cooper pauses to look at his pager. He smiles. It’s a call from a patient he’s known for years – she’s now in Mexico and getting ready to go to college. When he first started treating her, she was a little thing – maybe 6 or 7. And the prognosis was not good.

But years later, she’s beaten the odds – and for Cooper, she reminds him why he is so passionate about his job. Studying leukemia is a mission – not just a profession. “It’s nice,” he says, “It’s beautiful.”

Cooper, an Atlanta native, focuses on innovative therapies for pediatric patients who are notoriously difficult to treat. He is also a Renaissance man in a very modern medical world. Cooper, amiable and intellectual, weaves together all the scientific threads needed for a cure: the basic science researchers, clinical doctors, drug companies and the families who just love their children.

Why is that important? Because if everyone is on the same page, cures can reach the children who need them much faster. “It always starts with the kids,” said Cooper, director of the Leukemia/Lymphoma Innovative Therapy program at the Aflac Cancer Center of Children’s Healthcare of Atlanta.

Cooper’s love of this mission started at MD Anderson, where he met his mentor, Dr. Sima Jeha (CQ), nationally known for treating relapsed leukemia. While there, Cooper learned two key lessons: He loved his work and he was able create Phase 1 and Phase 2 clinical trials for pediatric oncology.

Phase I trials enroll small numbers of people (20 or more) who have advanced cancer that cannot be treated effectively with standard treatments or for which no standard treatment exists, according to the National Cancer Institute. Phase II trials are performed on larger groups (20‐300) and are designed to assess how well the drug works, as well as to continue safety assessments in a larger group of volunteers and patients. Phase II trials are often when the drug is discovered not to work as planned, or to have toxic effects.

After a three‐year stint there, the University of Alabama in Birmingham lured him to do a similar effort there. Again, Cooper – master of coordination ‐ was able to start up a Phase 1 testing program. “I think the science of the disease intrigued me,” he said. “There’s still the question of why certain types of leukemia are more difficult to treat – and why they come back.”

That said, Cooper has also seen a lot of advances – most notably, that doctors and researchers are now able to predict with greater accuracy which cases of leukemia are easier to treat and which ones are harder to treat. And they know that the harder cases are “the ones who really help us understand new advances,” he said.

Which leads to his current role in Atlanta…. Scientists know that these difficult types of leukemia often “hide out in bone marrow” – which protects them from the killing effects of chemotherapy. But with CURE’s support and other generous support, the Aflac Cancer Center is now the lead institution studying a particular drug which appears to push those hidden cells into circulation – and that allows them to “be destroyed by chemotherapy.”

Cooper has worked with the drug for three years. With the new funding, the center will work in cooperation with Pediatric Oncology Experimental Therapeutics Investigators Consortium (POETIC) – pulling in teams of researchers, doctors, the drug company and patients. POETIC promotes the early clinical development of promising therapies for the treatment of children, adolescents and young adults with cancer.

“This offers hope to patients and their families that we might be able to potentially help their child,” Cooper said. “And it also places them at the forefront of a battle to help other children as well.”

Bringing such a trial to Atlanta – or to any city ‐ is no small feat. There are numerous challenges to convincing drug companies to permit such trials. After all, it involves children and malignancies, which could be a public relations risk. Financially, it’s also potentially bleak – since scientists are typically trying to treat a very narrow population.

And although there are government incentives to bring drugs to children, it is still difficult to get companies to play. But it’s Cooper’s job “to make sure they do.” And this is just the beginning. Cooper is also hoping to work with a host of other drugs, delicately negotiating with pharmaceutical companies to allow the center to start other needed research.

Cooper, for example, is the principal investigator for the study of a drug which could be useful in treating children who have a specific mutation in their leukemia that leads to devastating outcomes. “Every time we’re successful, we can offer more options of care to our patients.”

Cooper, father of a boy and a girl ‐ a 3 year old and a 10 month old, admits he now empathizes even more with parents than when he was younger. “I get it now,” he said. “I get the pain and the worry that many of our parents face.” But, he adds, “I also get how important this work is.” And with that, he’s off to return a call ‐ to a very special patient in Mexico.

CURE Childhood Cancer is proud to be funding Dr. Cooper’s research.


December 15th, 2010

Kids Helping Kids : Book Sale a Big Success!

Another inspiring part of our Kids Helping Kids series. This story, as told by mom, Lisa Chasin about her daughter Samara’s quest to make a difference.

Samara and I were watching our Girls 12 and under tennis team (Dunmoor subdivision) play the Horseshoe Bend tennis team in the beginning of November. Madie Dreesman was watching her younger sister play a match. Madie was wearing a bandanna on her head and it was obvious she had lost her hair to some sort of cancer treatment. We spent some time speaking with Madie, her mom and grandparents who were visiting from out of town.When we left the match and were in the car I noticed Samara’s eyes were welling up with tears. When I asked her what was wrong she asked me about the girl with the bandanna on her head. I tried to explain that she was sick, had cancer and was going through treatment, most likely chemotherapy. This opened the flood gates to many, many questions about how do people get cancer, how is it treated, is there a cure, etc., etc.

Front row (left to right): Allie Fain, Claire Murray, Madie Dreesman (the girl with cancer that inspired this event), April Garrett, Samara Chasin (my daughter, the reason I decided to do the event), Shelby Tromer (the girl who did the Mitzvah project), Jack Chasin (my son). Back row (left to right): Lisa Chasin (me), Deb Dreesman (Madie’s mom), Aly Tromer (Shelby’s sister), Anabel Butler, Cindy Tromer (Shelby’s mom), Melissa Murray (the woman who sold the t-shirts we all wore and gave proceeds to the fundraiser)

When I suggested we do a fundraiser to raise money for a camp for children who are sick Samara emphatically responded that she thought it was more important to find a cure. And that is how it all began.

When I was looking for people to help blast emails to publicize the event my friend Cindy Tromer said that her daughter Shelby was looking for a “Mitzvah Project” to do and that she would probably like to take this on.  In case you’re not familiar, when Jewish children prepare for their Bat (a girl) or Bar (a boy) Mitzvah they typically create a project that involves community service (mitzvah means “good deed”).

The Tromer family and my family spent a month doing book drives, collecting books from a number of subdivisions, girl scout troops and from anyone we could think of. Deb Dreesman, Madie’s mom, got involved as well and did her own book drive.

Throughout the month of collecting we were sorting the books into categories. Then came the publicizing and advertising for the sale. We took out ads in the four local papers, created and put out signs in the major intersections surrounding the sale, blasted emails to neighborhoods, friends, family, and anyone we could think of, posted fliers in local businesses and schools and much more!

The day before the sale we recruited many volunteers to help load a caravan of cars/suv’s with boxes of books from both of our houses and unloaded them at the clubhouse in my neighborhood, Dunmoor, for the sale. More volunteers joined us to further sort the boxes, set up for the sale and then work the sale the next day. Many children and adults were involved. All were proud to help and it was a great experience for everyone.

In addition to the sale my neighbor, Melissa Murray, supplied the volunteers with t-shirts from her company, Double M Designs. The t-shirts had the words “celebrate” on the front and “life” on the back. We thought it would be helpful for shoppers to be able to easily identify the volunteers. Melissa sold these shirts as well as t-shirts with other positive statements (give-back, play-nice, etc.) and donated a portion of the proceeds to the fundraiser. When Madie showed up with her family we presented Madie with a “Celebrate Life” t-shirt as a thank you for inspiring us to have this great event.

It all lead up to a successful sale where we earned more than $2,000 benefiting CURE Childhood Cancer!


November 23rd, 2010

Atlanta Thrashers’ Forward Jim Slater Chooses CURE to Receive Proceeds of Special Award

The Atlanta Thrashers foundation recently donated $5,000 to CURE Childhood Cancer on behalf of Thrasher forward Jim Slater. In a special on-ice ceremony at the Atlanta Thrashers regular-season finale, Slater was honored as this year’s recipient of the Dan Snyder Memorial Trophy, named after former Thrasher Dan Snyder, who was tragically killed in a car accident in 2003. The trophy was presented to Slater by members of the Snyder family and is annually bestowed to the player who best embodies perseverance, dedication and hard work, and does so quietly, without fanfare or reward.

“The Thrashers have shown longtime support for CURE and a determination to make a difference in the lives of children stricken with cancer,” says Kristin Connor, CURE’s Executive Director.

In addition to this year’s donation to CURE Childhood Cancer on Slater’s behalf, the Thrashers foundation has been a generous supporter of CURE for many years, providing grants in years past to support the organization’s Open Arms Program. The Thrashers have also hosted children with cancer at Thrashers’ games and other events where they have unique opportunities to personally interact with the players. “The light in our kids’ eyes when they meet a Thrashers’ player or get to attend a game shines so bright,” Connor says, “and that is truly priceless.”

“CURE Childhood Cancer is a tremendous organization which we have worked with on numerous community outreach projects,” says Thrashers President Don Waddell. “On behalf of Jim Slater, and in honor of his achievement as the 2010 Dan Snyder Memorial Trophy winner, it is a privilege to award CURE with this Atlanta Thrashers foundation grant.”


November 22nd, 2010

A Day of Grace : Remembering a Special Little Girl and Fighting Back

On June 5, 2010, Lynne and Steven Bell remembered their daughter in a special way. Grace Morgan Bell was born June 6, 2002 and diagnosed with leukemia September 30 that same year. She died on January 1, 2006.

Tragedy plagued the Bells as their second child, Hudson Isaac Bell, was born on September 23, 2005 and died six days later from fanconi’s anemia, a rare genetic disorder. “Our ‘Day of Grace’ is in celebration of our daughter’s birthday,” said lynne Bell. “It’s going to be her eighth birthday this year. Every year since she passed away, we’ve tried to honor and celebrate her life by doing something special around her birthday. This year, we wanted to do something special for her again, to come up with an idea to try to help other kids with cancer, and their families.”

The event in locust Grove had a “Wings of Grace” yard sale, games, a bake sale, a silent auction, food and a special balloon release. “A Day of Grace” raised an astounding $3,000 for CURE Childhood Cancer. But for everyone involved, the day was about much more than the money raised. The activities during “A Day of Grace” also provided a healing experience for Steven and lynne and the many family and friends who came out to remember Grace and support the Bells.

“One thing that makes it special for me, so many people don’t know what to do with you after you’ve lost a child. They don’t know if they can talk about your child,” Steven said. “I think it gives them an opening to say, ‘oh yeah, they do want us to talk about their child.’ You do, just as much as you want to talk about your kids who are still here. A lot of times people avoid that topic.”

Steven said he has a message for others facing a situation similar to what he and his wife went through. “You can make it. We have friends who just lost a child, and I stood there with them the other night and said, ‘You can make it, I just want you to know.’


November 19th, 2010

Survivorship 101: Care After Cancer

Childhood cancer treatment is tough. oncologists use a combination of chemotherapy, radiation, surgery and hematopoietic stem cell transplant all with one primary goal: cure. fortunately research in pediatric oncology treatment over the past few decades has been incredibly successful. The overall cure rate for pediatric cancer is currently close to eighty percent (80%). Most children diagnosed with cancer today will become long-term survivors.

As healthcare providers we realize our commitment to the health of these patients doesn’t end at cure. Maybe you’ve heard the word ‘late effect’ or read information about health problems after cancer treatment. The treatments used to defeat childhood cancers can damage normal tissues and cause health problems after therapy; these are called ‘late effects’.

Research in the field of survivorship has shown that many survivors develop a health problem after cancer treatment. In an article published in the New England Journal of Medicine, looking at health conditions in a study of 14,000 adult survivors of childhood cancer, oeffinger et al. found that 66% of the adult survivors had at least one chronic health condition, many of which were late effects of cancer therapy. fortunately most of these conditions are not severe. Childhood cancer survivors are at risk for medical, psychological, and social problems after completing treatment (you can see a list of late effects in Table 1). Risk for these problems is influenced by many factors, most importantly: diagnosis, cancer therapy regimens and age at treatment.

As survivors move farther away from treatment, the risk of cancer recurrence decreases, but the risk for late effects is still present and in some cases increases with time, which is why life-long monitoring is crucial for survivors. Some late effects like thyroid disease, cardiac disease or infertility are not diagnosed until a decade off therapy. As patients and families transition back to a life without cancer treatment, it can be worrisome to think about potential health problems that may occur as a result of their cancer therapy. The impact of late effects on a survivor’s quality of life can be minimized through early detection and intervention. Early detection can be achieved through regular screening using evidence-based monitoring guidelines. The best way for patients to maintain health is to have regular survivor focused healthcare check-ups. Survivors should be seen regularly in a Survivor Clinic or long-Term follow-Up clinic.

Risk for late effects is dependent on the survivor’s cancer treatment so an accurate summary of treatment is necessary to determine an individual’s risk for late effects. During a childhood cancer survivor clinic visit, survivors (and their families) are educated about the specific late effects for which they are at risk, and how to screen for these health problems. The survivor team will create a Survivor Healthcare Plan, or SHP, that will include 3 things: 1) a summary of the patient’s cancer diagnosis and treatment, 2) an individualized risk profile and 3) a surveillance plan listing which tests should be done to diagnose the specific late effects for which the patient is at risk. This surveillance plan becomes the “roadmap to survivor care.”

The long-term follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers (www.survivorshipguidelines.org), created and maintained by the Children’s oncology Group, are used to develop the risk profile and appropriate surveillance plan for the patient. With the advances in pediatric cancer treatment leading to high survival rates, it is crucial to provide survivors with the specialized healthcare they need to lead long, successful and productive lives. The Aflac Cancer Survivor Program is committed to keeping survivors healthy, learning more about late effects of childhood cancer through survivor focused research and partnering with other healthcare providers to provide optimal care to survivors. In Georgia there is a network of healthcare providers who are working together to ensure that every childhood cancer survivor in the state of Georgia has access to the appropriate long-term follow-up care and CURE is a part of this effort.

To find a cancer survivor clinic contact the hospital where you received cancer treatment. To learn more about childhood cancer survivorship visit www.survivorshipguidelines.org and www.cancersurvivorlink.org.


November 18th, 2010

Funding Fellowships : Why We Do It

CURE Childhood Cancer has made it a top priority to dedicate more than a million dollars each year to support ground-breaking pediatric cancer research. As part of that support, CURE fully funds two pediatric oncology fellows at Emory University School of Medicine.

“Although cancer kills more children than any other disease, when compared to cancer stricken adults, the numbers of children diagnosed each year are often deemed by the federal government and pharmaceutical industry to insignificant to invest significantly in research for cures,” says Kristin Connor, CURE’s Executive Director. “We don’t think children should be lumped in with adult cancer patients but should be considered a critically important segment of our population. As a nation, we should care what diseases affect children and we should invest in finding the best treatments and cures for those diseases.”

Dr. Michael Briones couldn’t agree more. Dr. Briones is an Associate Professor at Emory University School of Medicine and has recently been appointed to head the fellowship program. His primary responsibility in his position is to continue to attract the best and the brightest academic scientists who will continue the process to ultimately discover innovative treatments and cures for pediatric cancer.

A fellow is an M.D. who has completed residency training in general pediatrics and is currently an academic scientist in a three-year subspecialty training program in pediatric hematology/oncology. Upon completion of the fellowship program, these physicians become highly specialized pediatric oncologists. over the years, CURE has funded a total of eleven fellows.

With only 60 accredited pediatric hematology/ oncology fellowship programs in existence nationwide, the fellow selection process is fiercely competitive. According to Dr. Briones, he receives an estimated 40-60 applications annually. He interviews the top 20 candidates but only four are selected per year for a total of 12 slots program-wide. “We have a preeminent mentorship program for our fellows that rivals the best in the country. The only way to move research in the hope of finding a cure for childhood cancer is to train fellows in excellent labs, and we have those labs here. People tend to want to fund specific projects but I think funding the mind of a researcher in training is just as important, if not more so, because that’s how projects get developed. our goal is that one of our fellows will eventually find a cure for cancer. For the past few years we‘ve been able to secure a top rank of fellows in our program. CURE is helping us to attract the cream of the crop,” Dr. Briones explains.

Throughout their first year, fellows dedicate their time to clinical rotations which allows them to be directly involved with inpatient hematology/ oncology, neuro-oncology, laboratory rotation and research exploration. The second and third years of fellowship training include an emphasis in specific areas of research where they choose to be clinical research investigators or basic science researchers. Three years of funding are guaranteed.

A fourth year is offered but no secure funding is provided so Dr. Briones is constantly scrambling for funding opportunities to protect and further those fellows involved in a critical stage of their research. Completion of the fourth year also makes fellows much more marketable when they start competing for the highly anticipated external grants, like NIH R1 or K Grants. “Impressively, some of the fellows funded by CURE have continued their work at other top institutions. Some of our top cancer researchers wouldn’t be where they are today, on the cusp of developing cancer therapies and finding cures for specific pediatric cancer, without CURE’s financial support,” according to Dr. Briones.

There are several areas where CURE’s funded fellows are close to groundbreaking outcomes, particularly in innovative therapeutics and Phase 1 trials, an area which has grown dramatically. “The research we are conducting here at Emory in innovative gene therapy is dramatic. CURE funds some of that too, which is very exciting, as it postures us to host clinical trials here. That’s another reason CURE’s support of our fellows is so vital. It’s incumbent upon us to continue funding researchers who can come up with new therapies. Part of my job is to ensure that we have the research capability and curriculum in place, and viable sources to fund all of our fellows,” Dr. Briones explains.

According to Connor, “of the eleven fellows CURE has funded, every one of them is now a leading pediatric oncologist. Some of these doctors have continued at Children’s Healthcare of Atlanta and some have gone on to join the staffs of other top pediatric cancer hospitals all over the country. ” She adds, “Through these doctors, CURE continues to touch the lives of countless children with cancer in communities nationwide, and for that, we are exceptionally gratified to all of whom contribute to CURE.”

“We must continue to attract top minds through dedicated and committed donors like CURE,” states Dr. Briones. “It’s the only way to help us achieve the ultimate measure of success which is the discovery of a cure for children’s cancer,” he notes. ”


November 16th, 2010

Sean Michael Dever

If you are anything like me you go through life preparing for the bumps in the road which might pop up unexpectedly. You go through life preparing for obstacles that might appear before you. You go through life preparing for your family’s future by purchasing life, health, auto and home insurance just in case. But how do you prepare for the unimaginable? How do you prepare for a doctor to tell you your child has cancer? How do you prepare your little boy for the loss of his leg? How do you prepare your 11-year-old for the possibility he may never step foot on a basketball court again? How… ?

This is exactly what we had to do in July 2007, when our youngest son, Sean, was diagnosed with osteosarcoma, a bone cancer, in his left knee. Sean had been complaining about a sore knee but initial x-rays did not show anything alarming. After a month of pain, sleepless nights and a progressive limp, we finally insisted on an MRI. Thus began our journey, and it is a lifetime journey, into pediatric oncology.

If you are reading this newsletter published by CURE, you probably have been touched in some way by pediatric cancer. The first time I picked up this publication, I was sitting in the Aflac Cancer Center on the fourth floor numb, looking around at all the children and their parents thinking, “I cannot believe I am here. How did we end up here? I am not strong enough for this.” That was two days after Sean’s diagnosis, as my husband, John, Sean and I sat in the waiting room for our first appointment with Dr. Bradley George. I looked at all the children and wondered, “What is your life like?

How are your parents dealing with siblings, jobs, everyday activities, school?” I thought I would find the answers on their faces because I needed to find the answers somewhere. But I didn’t find answers that day from strangers; I found my answers through my 11-year-old son. Sean sat in every meeting with us while words like osteosarcoma, chemotherapy, amputation, rotationplasty, doxorubicon, cisplatin, and methotrexate were uttered. Words we would all come to know like our own names. Sean gave me more strength, showed me more character, and bestowed more grace than anyone I had ever known. I am so proud to say I am Sean’s mom.

By the weekend, our community was aware of Sean’s cancer. Sean was the fourth child to be diagnosed with cancer at his school in five years, so we were surrounded by love, compassion and people who had walked this walk. That weekend, Sean made a phone call to his friend Andrew Vassil, who had been diagnosed at six years old with an inoperable brain tumor. Sean and Andrew, two 11-year olds, had a conversation about cancer and biopsies, not sports and girls mind you – cancer and biopsies! How surreal is that?

While the initial diagnosis of cancer was devastating, the surgical options presented to us were just as overwhelming. Not only did my little boy have cancer and have to go through 30 rounds of chemotherapy, but they would have to take his leg, too! I was in shock…he’s got things to do, games to play…please, please, no.

After a month of research, consultation, and prayer it was decided that the best chance for Sean to live a cancer-free life and continue the life God intended was to undergo rotationplasty surgery. Complete amputation and limb-salvage were also presented as options but the surgeon told us rotationplasty would give Sean the most function and usually only means one surgery. More function, less time in the hospital – sign us up!

Sean’s left knee and most of his thigh were removed (and the cancer!) in october 2007, his lower leg was rotated 180 degrees and reattached to the remaining part of his thigh. for those who have never heard of rotationplasty, and I know it is hard to imagine, Sean’s heel is now his new knee while his foot acts as a regulator for his prosthesis.

It has been almost three years since Sean’s diagnosis, and while this may sound odd, childhood cancer has made us better people. When applying to college last year, my daughter wrote about her brother’s fight, “Having something so bad happen to your family weirdly has amazing outcomes.” I couldn’t agree more.

Our family has been involved in many fundraisers for childhood cancer through CURE. finding a cure has given me a purpose in life I never would have found if not for Sean’s diagnosis. I have sat with senators educating them about the lack of funding for pediatric cancer, asking them for their help. I have even spoken in front of more than a thousand people telling them about children with cancer, asking them for money – this was way out of my comfort zone for sure, but I will do anything for these kids.

Today, Sean is cancer-free. We go in for chest x-rays every four months. He is on his fifth prosthetic – he just keeps growing! He will be attending Blessed Trinity Catholic High School in August. He plays football, basketball and this summer he has been selected to play in an elite travel lacrosse league. My boy is living the life God intended and we are more than blessed to sit on the sidelines and cheer him on.


  • 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.