As we close a difficult year, we reflect on lessons shared by childhood cancer patients and survivors who have faced adversity with grace, courage, and resilience. From their words, come some messages worth remembering now.St. Baldrick’s Honored Kid, Sarah Swaim, and two-time leukemia survivor shares how having support during her cancer diagnosis helped her to keep going.
“Support when you’re diagnosed can be very lacking. I’m lucky and blessed that was not the case for me…but when I see kids at an event seeing complete strangers care for what is happening to them…it is so overwhelming and so touching. It gives you a boost. It makes you think ‘I have all these people behind me, and I can do anything.’ It gives you the energy to keep going.”Micah Bernstein battled neuroblastoma and is here today because of St. Baldrick’s funded research.
“My secret [to getting through difficulties] is to think about something else, or talk to someone like a parent or a friend or one of the nurses or doctors, or, one of the things I did was immerse yourself in a book or movie or video game or some other experience, because then you have something to do and something to take your mind of treatment and everything else happening around you.”St. Baldrick’s Ambassador Alexa Moore battled cancer when she was 3 years old. Now 17 years old, she is an advocate for childhood cancer research.
Alexa at age 3: “I fired cancer! My doctors are going to say, “you’re not a cancer person – get outta here!”
Alexa at 17: “What I do know is I would not be here today without amazing organizations [that] raise funds for childhood cancer research…Our motto in this house is “no wasted days – live life to the fullest and use that day to have a positive impact on someone else.”Mark Lubash teams up with St. Baldrick’s and shares what it’s like to be an adult childhood cancer survivor.
What’s on Mark’s bucket list?
“One, I’d like to do everything over again. I love to travel…I’ve always wanted to go to Egypt and see the pyramids and sphinx and that kind of stuff.. I’m an avid sailor, but I sail beach cats, catamarans, Hobie cats, little 16-18’ boats off the beach…I would love to sail in America’s Cup, the ones they’ve been racing the last couple America’s Cups were catamarans on hydrofoils – and any sailboat where you have to wear a helmet and go 60 miles an hour – I want to sail that!
I’ve always been the patient, the one with an issue… At this point in my life, I’m settled, and I’d like to give back and try to help…When I was 13 years old, my vision was declining, it was pretty severe at the time, and I happen to be Jewish and so I didn’t do my religious training – I was never bar mitzvahed. I’d say that’s on my bucket list!”Michael Gary was diagnosed with cancer as a teenager, lost his leg and was able to move past it all and thrive.
“During treatment I would think of a Bible verse in James…’Count it all joy when you encounter trials of various kinds for it produces steadfastness in the Lord.’
I kept saying that in my head and it would get me through this entire treatment and the surgeries that followed it, and even now I’m having some difficulties adjusting. I’m not the same as everybody else anymore but I can still get through that because all this hardship makes me trust in God more.
The best I can say to anybody who is a patient or close to a patient who is undergoing cancer, there are so many people number one supporting you…and there are a lot of people praying for you and I know that because I am praying for you.”Dr. Greg Aune is a St. Baldrick’s advocate, a researcher focused on survivorship issues, and a childhood cancer survivor experiencing the late effects of treatment, himself.
“On December 26, 1989, I was diagnosed with Hodgkin’s Lymphoma. What I endured in the subsequent 15 months of treatment was surely one of my life’s biggest challenges. But having cancer turned out to be one of my biggest blessings. I was fortunate to survive and now, years later, I can tell you without a doubt that cancer has given me far more than it took away. I developed a true appreciation for life and the motivation to pursue my dreams. Over the years, I have had a host of wonderful experiences and met countless amazing people all because of my cancer diagnosis.
[As a physician, I tell my patients] “‘a positive attitude is one of the most important things that will get you through this.’ Trying to get patients to focus not on 6-7 months down the road, but what is happening now, [I say], ‘try to think about the good things that are happening instead of all the bad things that are happening…There’s a lot of negative that you can focus on, but…focus on what is going right and what is good.’ I think that is really important.”Harlem Clemons was diagnosed with Hodgkin lymphoma at the age of 5. He now works with the St. Baldrick’s Foundation to raise awareness for childhood cancer research.
Harlem’s family added a holiday on December 27. “It’s the day we learned I was cancer free. We celebrate it as a holiday now.”
As we near the end of another year, we remember the kids who will not celebrate the holidays with their families this year, and to Sarah, Micah, Alexa, Mark, Michael, Greg and Harlem, thank you for your wisdom.
These childhood cancer survivors are here today because of research, but there is more work to be done.
Help conquer kids’ cancer today.
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