Paint Your Hair Blue – A Celebration of Life with Hope for Tomorrow in the Face of Pediatric Cancer [transcript] [audio]

Guest: Sue Matthews and Andrea Cohane

Presenter: Neal Howard

Guest Bio: Sue Matthews, along with her sister Andrea Cohane, is the author of Paint Your Hair Blue, a mother’s longing to give enduring eloquence to her daughter’s voice, to not let it go silent. Sue is President of the Taylor Matthews Foundation, a tay-bandz organization, which is a 501 C-3 founded by her then 11 year old daughter Taylor, who lost her battle with pediatric cancer at age 16. As a nationally recognized advocate for pediatric cancer awareness, Sue oversees all of the Foundation’s grant making, fundraising, event planning, and financial reporting, as well as collaborates with other cancer foundations, associations, and societies. The Taylor Matthews Foundation is at the forefront of new initiatives in awareness and continues to fund medical research at leading medical centers, with the hope of a brighter future for parents struggling with the needs of a sick child. Sue is a member of the Children’s Council at Columbia Medical University Center, the National Association of Professional Women, the National Organization of Italian American Women, the NYS Society of Certified Public Accountants and the American Institute of Public Accountants.

Segment Overview: Sue Matthews and her sister Andrea Cohane talk about their forthcoming book “Paint Your Hair Blue” (Morgan James, June 2018) that tells the story of Taylor Matthews, a child with cancer. They also talk about how the family stayed strong, the lessons they learned, and the Taylor Matthews Foundation that raised 1.4 million to fund research in pediatric cancer.

Transcript – Pediatric Cancer

Neal Howard: Welcome to the program. I’m your host Neal Howard. Thank you so much for joining us here on Health Professional Radio. My guests are Sue Matthews along with her sister Andrea Cohane. They’re joining us on the program today to talk about their upcoming book, ‘Paint Your Hair Blue’. The book tells the story of Taylor Matthews, a child with cancer. They’re also going to talk about how their family stayed strong, some of the lessons that they learned throughout and also going to talk about the Taylor Matthews Foundation that raised millions for pediatric cancer. Welcome to the program both Sue and Andrea. How are you both?

Sue Matthews: We’re great. Thank you for having us.

Andrea Cohane: Thank you Neal.

N: Great. Sue, you’re the President of this foundation. Talk a little bit about why you started the foundation in the first place and just a little bit of background about yourself.

S: My daughter Taylor was diagnosed with cancer when she was 11 years old and she actually founded the foundation. Osaka Diagnosis led us within the first week to find out the protocol for her particular disease. It was 30 to 40 years old and they’ve not made any progress in that, now 50 years old to protocol. So she was shocked, we were shocked and her immediate response was, “Mommy, I want to help other children. Let’s do this.”. Of course, automatically within the first month and you know what, honestly the foundation she outlived her diagnosis by years and I truly think helping other children and funding Pediatric Cancer Research was part of the cure for her. Helping others with something she really wanted to do in life.

N: Even though you’re writing a book, you’ve got a book coming out, you and your sister and you’re raising awareness through this foundation that your daughter founded. You say there’s absolutely no progress that has been made in better diagnosis of this condition. You say people aren’t diagnosed. They have this but they’re not diagnosed until much later in life or was it an advanced form?

S: No. Most pediatric, this is I’m saying a 30 or 50 year protocol for her particular type of cancer which is a very rare one. They have made tremendous progress in other type of cancers. But still, not in her type of cancer and mostly sarcoma, which she had the sarcoma, they’ve made very little progress with metastatic sarcoma. So I was just at a pediatric oncology conference last week which port doctors from across the country, they’re really trying to do something about it but they have not had success.

N: Andrea, what experience had you had with cancer prior to your niece’s diagnosis?

A: I hadn’t had any real experience with cancer before Taylor’s diagnosis. Obviously, we all know people. We’re all touched by it in some way but if we were not immediately touched, and I have to say, you only hear stories about it happening to somebody else and then when it happens in your own family, it’s incredibly shocking especially to an 11 year old girl. Taylor was literally had never been on an antibiotic. She was the healthiest, most energetic child. We used to laugh at her because if anyone else was sick, Taylor was always like she was running in the other direction and then for it to happen to her was truly shocking.

N: You’re co-writing writing this book with your sister, “Paint Your Hair Blue”. What is the significance of the title?

S: Well, Taylor’s favorite color was blue to start with, but the title of “Paint Your Hair Blue” really epitomizes my daughter. Everything was fun-tiring life. She was quite a prankster and she was like that from birth but cancer was not going to stop her from being that way. So you generally lose your hair in 10 to 14 days after your first round of chemotherapy. She would tell the other kids, “Have fun with it. If you’re a little girl, dye your hair pink. If you want, dye it with your favorite color. If you’re a boy, cut it in a mohawk, do layers, spike it.”. So she really was helping other children in the hospital and she lost her hair twice and had a lot of fun with it.

N: Seeing something bright in a dark situation?

S: Yes. That’s what the book obviously. We know at the end that she passes. However, the book truly is the celebration of her life. She did not let cancer get her down. We snuck out of the hospital. Whatever we had to do to make her happy. She wasn’t going to pain, suffering. I know if she was here today, she would tell me she didn’t suffer. I taught her how to drive when she was 12 which is clearly against the rules, like she had no immune system. So what we do, we were locked her in our house and that was until I was writing the book that I realized she didn’t have insurance.

N: So Andrea, when you were writing this book, what were some of the things that that were going through your mind I mean, she’s not your daughter but she’s the closest thing to a daughter. Talk about how the family had to come together I guess it drastically changed the lives of everyone, I mean how much were you helping out when you weren’t living right there on the spot?

A: First of all, Taylor, she got so much joy when our two families were together. It was really her when they asked her or tell her, “You have a few days off, what do you want to do?”. It was always she wants you to call me a nanny. She wants to be with our nanny and my daughter who’s now 16 who was a baby at the time and she wanted to be with her cousin and my husband. When we were all together, she didn’t have cancer anymore. It was just about really having so much fun, and laughing and celebrating the moment. I tried to be there as much as I possibly could, both because when Taylor was sick all you wanted to do was grant her every wish and if there was any way I could be there, I would because I knew it made her so happy. And I had to support my sister who really didn’t have other family around who was willing to help her out. But unfortunately, I didn’t live in the same state as she did, in fact, I lived in London for part of it. But I did come as much as possible. And it’s those memories that carried me through today, that carried us to writing the book.

N: Sue, is there any contribution from any of your other children to the book maybe some of their experiences that are talked about in this book, “Paint Your Hair Blue”?

S: I wrote some of their experiences and there is a chapter called “Lost …” because the siblings really, your mom, I was a stay-at-home mom, suddenly I disappeared for 5 years. Everyone asks my other daughters, “How are your parents? How was Taylor after she passed?” and they weren’t even recognized. So tremendously, that affected my other daughters. They are written about and part of the book and they know everything that was written about with them but honestly, it’s too difficult for them to read and they don’t want to relive the experience at this point but they will when they’re ready.

N: What is it that you think could be done to fund pediatric cancer research and sort of improve some of the treatments for kids?

S: Well right now, we’re funding precision medicine which is when you take a child’s germline and sequences to look for DNA mutations and they are finding drugs to block the DNA mutation or at least give to children a much less toxic protocol. It’s a long time, about every step, effects are very difficult when you have a toxic treatment. And the book has tremendously raised awareness for pediatric cancer. Our donations are up tremendously which is so wonderful, something that Taylor would want. So the legacy continues to increase donations and the book is hopefully going to help a lot of parents or anyone with cancer or chronic illness.

N: Andrea, what advice would you give to other family members who might be in the same position that you found yourself in with your niece?

A: I would say that you really have to just be present and then be very sensitive. Every person is so different as to what they want and need but anytime that you can give. These parents have to go and be in the hospital for days and months on end and anybody that can come and join them and bring some joy. Kids are kids no matter what. Kids want to have fun no matter what. You can bring the fun, you’re really, really going to help the family.

N: Sue, Andrea, a pleasure. Thank you both for coming in today. Sue Matthews and her sister Andrea Cohane, authors of the book, “Paint Your Hair Blue” due out June of this year, telling the story of Taylor Matthews, a child with cancer and the Founder of the Taylor Matthews Foundation. Thank you both.

S: Thank you very much.

A: Thank you.

N: You’ve been listening to Health Professional Radio. I’m your host Neal Howard. Transcripts and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm. You can subscribe to this podcast on iTunes, listen in and download at SoundCloud and be sure to visit our affiliates page at healthprofessionalradio.com.au and hpr.fm.

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