Tournesol community members whose lives are impacted by cancer find the holistic and integrative health support they need at Tournesol. Remarkable emotional and physical relief is achieved for both the patient and the caregiver by using a combination of mind-body therapies, manual modalities and nutrition guidance.
We met up with our friend and colleague, Sue Matthews this week. She founded Conquering Kidz Cancer and we'd like to share her amazing story with you.
What is the mission of Conquering Kidz Cancer?
CKC, a tay-bandz organization, is a 501C3 non-profit organization dedicated to raising awareness and funding pediatric cancer research. Our goal is to help children with cancer by funding cutting edge research that can impact their lives now, not years and miles of bureaucratic red tape from now.
We are currently funding Precision Medicine at Columbia University. The practice of Precision medicine involves genome sequencing of an individual child’s tumor to identify mutations in their DNA. Identification will enable more precisely targeted treatment and prevention that will improve outcomes, decrease adverse events and refine or revise diagnosis to achieve more accurate prognosis.
We will never stop pushing the boundaries of conventional therapies, dated public policy, and the logjams that keep good drugs in the lab and out of the clinic. All children deserve a bright and healthy future
What resources does Conquering Kidz Cancer provide for parents and families?
CKC is only charted by the government to fund research. On a personal level, I help families by attending medical meetings and visiting their children in the hospital. I blog to give parents and caregivers helpful ideas and I am writing a memoir to help parents deal with a pediatric cancer diagnosis and to inspire parents to believe that even with a cancer diagnosis life is a celebration.
I want to remind parents that kids will be kids. Let them.
How did you prioritize your own health and wellness during Taylor’s fight with this disease, and what advice would you offer those caring for a loved one being treated for cancer?
When a child is sick, nobody but Mom or Dad will do. And you wouldn’t have it any other way. But when that illness is serious and lengthy, Mom and Dad can get pretty worn out and may need to let others help both their child and them.
When Taylor was first diagnosed, I was paralyzed with sadness and anxiety, but I thought I had all the energy in the world to take care of her. There was nothing I wouldn’t do to make her feel happier or more comfortable. But lengthy hospital stays can really wear you down and I soon learned that I couldn’t keep going on adrenaline alone. My mind and body were simply overwhelmed.
Cancer doesn’t just strike individuals, it strikes the whole family.
With cancer in our lives for the foreseeable future, we needed to figure out a way that Taylor would not be alone, our other daughters would not be abandoned, and Bob could both go to the office and continue his daily cancer research. Once our rotation was in place, we became an effective team, but one that desperately needed both help and sleep. Taking care of ourselves was the last thing on our minds, but it really was a necessary part of doing battle.
While I spent a majority of Taylor’s overnight stays with her, I tried to come home on the weekends to spend time with our other daughters and catch up on some sleep. I always felt terribly torn, but I needed to gear up for the following week and stay on top of things at home. While the rotation was very tough on the whole family, it was the only way we could survive. We were thrilled when friends and family were able to help out and join our team. Time spent with friends nourished Taylor’s heart and enabled her to endure more boredom and pain than anyone should ever have.
During hospitalizations, I tried to take a quick walk each day just to get some air and rejuvenate. I couldn’t leave Taylor for long, but I knew we would both be better off if I could refresh for just a few minutes. Frankly, she was pretty bored hanging out just with me anyway so it worked for both of us.
Cancer is a marathon, not a sprint. So when you’re exhausted, bring in the troops and take a break. It’s better for you and better for your child.
A caregiver and particularly a parent is traumatized by watching their child suffer and the anxiety of the potential outcome is impossible to bear. My husband and I tag-teamed to balance all the things that needed to be done. I took care of Taylor's medicines, side effects and everyday needs as well as slept most times with her in the hospital. My husband took care of the research side getting many second opinions and having all the meetings with the doctors while Taylor and I were not present. This tag-teaming proved to be invaluable and the only way to not get run down. We also found, although sometimes uncomfortable, that we needed to ask for help from family and friends. They provided mental support for our entire family and did many tasks I no longer had time to do.
Health and wellness are critical because if the caregiver gets sick they cannot enter the hospital/clinic as often your child and other patients have lowered immune systems due to chemotherapy. I did a tremendous amount of acupuncture and massage and was seen by a doctor who recommended vitamins that my body needed. My mental health was addressed by therapy. Very importantly I slept day or night anytime I could, and tried to eat as well as possible while living in a hospital. I needed my health to take care of Taylor and give my other girls (sometimes called the lost siblings) as much of my attention as possible. Lastly, we all found that laughter was the best medicine!
To summarize I would tell caregivers to:
- Tag-team with a spouse, partner, family member or close friend.
- Ask for help.
- Incorporate alternative therapies into your life.
- Seek professional therapy if you think it is needed.
- Sleep as much as possible.
- Eat well, as best you can.
Taylor’s wish was that someday no child will ever have to face cancer - what’s the most important thing we as individuals can do to help make her wish a reality?
Donate to our charity. We have no paid employees, very little overhead and all of us maintain offices in our own homes, giving us the ability to eliminate most administration costs resulting in a greater amount actually given to research. The research we are currently funding costs a tangible amount of $5,000 per child, giving us the opportunity to save a child's life one family, one child at a time.
Many pediatric cancer patients have significant and sometimes life-threatening conditions due to the side effects of harsh treatments, resulting in a shorter life span. Sequencing can provide answers to less toxic treatments that will afford long-term survivorship.
Secondarily, pediatric cancer is severely underfunded by our government, only receiving 4% of the National Cancer Institute’s budget for all pediatric cancers. In addition to raising funds, we need to raise awareness of this fact.
Taylor sounds like such an amazing, unique soul. Thank you again for sharing her story with us, and for the work that you do.
Was Taylor’s cancer journey successful? I dare say YES! You may wonder why, as she ultimately lost her battle. I don’t say she triumphed just because she beat tremendous odds and lived almost five years after diagnosis. She went into remission after less than a year when her original doctors told us it was a lost cause. She made even the most jaded oncologists believe she might make it. But that doesn’t define victory, nor do the number of years she lived.
Taylor’s cancer journey was successful because she lived every single day she had on this Earth to the fullest. When she was feeling well, she was living well, laughing, playing, and experiencing life. I didn’t teach her to do this, she taught me. And what she taught me can apply to everyone, no matter what the prognosis or situation.
Whatever life you desire your cancer journey is in your control and once you make this realization it will empower you greatly. Taylor didn’t just tell us all to celebrate every moment of life, she lead by example.