SPARKLE PERSON - MARGARET GUEDES, CEO, KIDS BEATING CANCER

Margaret Guedes, is one of the most remarkable women I’ve ever known.  I met her at the Women’s Conference several years ago when she purchased an angel painting from me.  We started talking and she told me her incredible story.  I wanted to be her friend, and I wanted to help her in her mission.  Her story reminds us to put life in perspective and stop the whining about silly things.  She, her son, her mission and her story changed my life.

Margaret is the CEO of Kids Beating Cancer, a non-profit dedicated to providing resources, funds and support for children with cancer, leukemia and related life-threatening diseases.  In the years since her son passed away from leukemia, (see the full story at www.kidsbeatingcancer.com)  she has impacted the lives of over 8,000 children. That’s pretty freaking amazing, right?  And due to over 20 years of her continual exhausting efforts, she was able to open the Kids Beating Cancer Pediatric Transplant Center at Florida Hospital for Children in Orlando.

Margaret is one of the kindest, most dedicated people I’ve ever known.  She’s a whirlwind of motion, seemingly non-stop.  Her vision and goals are daunting.  She keeps moving forward while keeping her charity lean with very few employees, believing most of the money raised must go to the children and her vision.  I truly don’t know how she does it.

HOW DID YOU GET WHERE YOU ARE PROFESSIONALLY? 

I started by being the mother of a child that was diagnosed with leukemia when he was 5 years old and I was 8 months pregnant with my third of four children.  I got here today because of my son, John, who is my greatest inspiration.  He would make everyone smile.  He endured so much pain and so many disappointments.  He was a kid that just wanted to go to school and didn’t want to have attention focused on him.

This little character had a message to give to the world and I had to be his voice and his strength.  So instead of crawling in a corner and crying (which I did many nights), I had to remember how much he went through . . . even times when he begged and cried not to have a test, but he knew I would make him take the test.  And in the very end when he relapsed and wanted to know what was going to happen, I had to explain that he would die.  He asked that I do everything to help him live - to keep fighting.

These kids become super-brilliant about their disease, because it’s all they know - taking medications, going to the doctor, getting pokes, having procedures knowing they will hurt and make them sick.  It’s a time in their life when they shouldn’t know about death, but they are seeing some of their friends die, so the parents must have that conversation with their child about death.  It was all of these things wrapped together that was my inspiration.

At the time I was a Center Manager for Cigna Health Plans when the HMOs first came out, so I had some business and medical knowledge that helped me better navigate the horrible healthcare system for pediatric cancer 25 years ago.

Not every mother is going to start a non-profit.  I had no idea how difficult fund raising is, even for the greatest cause, even when you have the story, mission and programs.  It’s very hard and competitive.  I wanted to start a foundation and provide everything that was not available for us, so no family would have to go through what we went through.

John put a fire in me that I couldn’t live with myself if I didn’t do this, even though there were days when there wasn’t enough money and I didn’t know if we were going to make it.  Would I get enough people interested, or would people think that I’m just a mom that’s lost a child, that I’m not here for the long term and I’m not going to finish and keep fighting?  But I would remember John’s smile, and I heard his voice in my ear to continue on.

As long as there are children being diagnosed and the treatment is a transplant, we have to do everything possible to help the families get through it financially and emotionally so they don’t fall apart like ours did.  So they can survive after the treatment, grow up and do great things. 

IF YOU COULD CHANGE ANYTHING IN THIS WORLD, WHAT WOULD IT BE?

On a broad scale, it would be for pediatric cancer to be eradicated. That no child would ever receive a diagnosis of a life threatening cancer.  But that’s not going to happen tomorrow.

More immediate – I would wish for access to transplantation, the only known cure for over 80 different cancers, to be more accessible by location, cost, and with top doctors such as at the KBC Pediatric Transplant Center.  That children are not sacrificing getting cutting edge advanced protocol clinical trials by staying in a hometown and not traveling far away.  That we could have all of our centers provide the best in international care.

Right now KBC is funding the costs that are not covered from Medicaid to even see if a child is transplant eligible.  If your child has a disease that has been proven a transplant is the best and only treatment for the child’s disease, if it’s Medicaid, it is not covered.  The workup, just to test them and see what their typing is, and testing siblings and parents to see if they are a match, is not covered by insurance and costs $10,000.   I would like to have money be raised for KBC because they would get it – no one else in the country is doing this and we could save so many more lives if money wasn’t a factor.

WHAT ADVICE WOULD YOU GIVE TO OTHERS?

Live life to the fullest because you never know what life will bring.  That you should tell your children or husband you love them.  Maybe that you should finish something that you hadn’t.  As a mother, love and treasure your child and every memory. That you will always be there no matter what they do.  Enjoy the time that we have because it could be cut short.

WHAT PERSON HAD THE MOST INFLUENCE ON YOU PROFESSIONALLY AND PERSONALLY AND WHY?

Without a doubt it is my husband, Dr. Ben Guedes.  He was my son’s physician and was with us when he was near death in the ICU.  I later dated him after my divorce and he had also divorced.  We had so much in common.

We are both very passionate about children and saving lives.  We understood the work ethic needed in this field and the sacrifices you have to make.  He made me realize I was strong enough to follow my passion and that I could accomplish it well.  We have both learned so much from one another when we are writing a proposal, coming up with a new concept or idea, or analyzing how to approach a problem.  He has helped me understand what the physician goes through and I’ve helped him better understand what the parent goes through.

He has found himself changing his way of working with the parents in that they need a bit more time to accept the prognosis.  The parent must accept the decision to let the child go, they must turn off the machines and live with that guilt for the rest of their lives.

Ben has kept me going every time I got discouraged.  When I thought, “Jeez, I’m really just a mom.  And I feel like someone out there is going to be bigger and better than me.”  And he stops me every time and tells me, “No one can do it better than you.”  He gives me strength, willpower,  understanding and guidance.  He is my greatest inspiration on how to live my life as a wife, mother and a non-profit career woman.

DO YOU HAVE A FAVORITE QUOTE AND IF SO, WHAT IS IT?

When I first lost my son I was very drawn to Mark:10:14 that says Suffer the little children to come unto me, and forbid them not, for such is the Kingdom of God.  This gives me great comfort as a mom in reminding me that John is in heaven and no longer hurting. When I was trying to come up with the right quote to put on the Donor Wall at the Kids Beating Cancer Pediatric Transplant Center where there is a statue of John with his teddy bear, I asked my dad, who was just days away from dying, what his favorite quote was.  And he came up with the same bible verse.

WHAT HAS BEEN YOUR MOST SIGNIFICANT DISAPPOINTMENT OR FAILURE AND WHAT DID YOU LEARN FROM IT?

My greatest failure or disappointment is my weakness to trust all people on what they say, what they say they can do, as well as what they say they have done.  It has caused great disappointments personally and professionally when I believed in a person’s resume and presentation without checking them out.  I have learned that some people are not good representatives of Kids Beating Cancer, and have done things for personal gain rather than working to achieve our goals. I had not vetted people in the past, which led to me learning that is a very necessary process that I will always do in the future.

WHAT ARE YOUR FUTURE GOALS?

Professional Goal:  Now that we have the Pediatric Transplant Center with eight beds, they are all full.  We can’t stop here because there are too many children in need.  It won’t be easy since we will need to raise another $2,000,000 to double the size of the Center.   There is already space available when NICU moves to the Women’s Hospital.  This is a definite Three Year Plan to raise these funds so we can have more children be able to be transplanted and be with their families and support systems in Central Florida.  It’s very critical and of great need.

Personal Goal:  To actually spend time with my husband.  We both are workaholics and are always talking about taking a trip, and then months go by because we are always working and time is too short.  I’d like to know that KBC has the support, the brand, and the sustainability that it can be self-supporting without me going crazy, and driving my husband crazy, so that we can vacation and not worry and can enjoy our vacation without talking about work.

WHAT MAKES YOU HAPPY?

To not be in pain, to be able to sleep at night (I have chronic insomnia), to not have abdominal pain, to be able to walk in high heels again. . .  Besides all the ailments - I do LOVE a really good heavy tannin bold cabernet sauvignon.  My husband introduced me to that and he said it’s his greatest regret because he introduced me to an expensive wine.

WHAT ARE YOUR FAVORITE FOODS, HOBBIES, TV SHOWS?

I cut out pasta and that eliminated a lot of things I like.  I’m bad on sweets - ice cream, chocolate, and occasionally a good steak.  I don’t have time for any hobbies, but I do like it when my husband and I can go walking someplace such as on the beach, in the snow in Canada or anywhere we can see different parts of the nature of our world.  I love going to the theater, musicals and the ballet, and I could do that every week.  I just got off of watching Downton Abbey.  And now I’m watching all of the reruns of The Good Wife.  I also love watching old movies and historical movies of kings and queens.  I watch a lot less news these days – I find that healthy!

To contact Margaret, go to her website www.kidsbeatingcancer.com and read more about the wonderful things they are doing.  And if you get a chance, please go to their Gala in October to help raise funds for the children and their families - and to help KBC reach their goal to expand their facility at Florida Hospital for Children.