September is Childhood Cancer Awareness Month
We came across this illustration from the Coalition Against Childhood Cancer (of which we are a proud member) showing some of the incredible advances in the survivability of childhood cancer since the 1970s. These advances would not have been possible without the support, hard work, and dedication of physicians, researchers, patients, families and many others.
(It should be noted the survival rates listed below reflect general rates and in no way are a representation of an anticipated actual survival outcome for any individual child.)
We should also point out that cancer treatment isn’t perfect, of course. We probably all know someone who lost a child to cancer. This is why we continue to fight on. We are proud members of the Children’s Oncology Group which is on the frontline of treatment and research into childhood cancer. We are also proud to have been successful in enrolling many of our patients in clinical trials that help move treatment of childhood cancer forward.
We caught up with our own Mary Warren, R.N., CPHON (Certified Pediatric Hematology Oncology Nurse) who has worked with children diagnosed with cancer -- and their families — for many years! She now is part of our Long-Term Follow-Up Clinic for Childhood Cancer Survivors.
Cure 4 The Kids: You have worked with pediatric patients for years. What made you enter this field?
Mary: I have worked with pediatric oncology patients and their families for about 25 years. My cousin died of acute myelogenous leukemia 45 years ago, it impacted me deeply. I always told myself, “self” you are going to take care of kids who have cancer. And, it worked out!
Cure 4 The Kids: As a Registered Nurse I know you’ve been to many medical retreats and summits to help you learn from others. Earlier this year, you attended the Coalition of Childhood Cancer Summit Meeting which is about advocacy and fighting for more awareness of childhood cancer and the funding for research.
Mary: Yes, I have attended countless conferences and meetings.
The CAC2 summit is driven and supported by advocates of childhood cancer. Most of these advocates have lost a child to a malignancy and have started nonprofit organizations that raise awareness and funds to promote research. My favorite section of the coalition was listening to Dr. Oren Becher on his research with Diffuse Intrinsic Pontine Glioma (DIPG). Did you know it takes 9 months to give a mouse model a DIPG? I am inspired. (further explanation) The brain tumor DIPG is a pontine (brain stem) glioma. DIPG are usually non operable, very aggressive, chemotherapy resistant, and the usual life expectancy is about 2 years. The mouse model is not what is inspiring… it is the passion the researchers have for their progress in advances of understanding DIPG. That is exciting!!!
Cure 4 The Kids: As head nurse in the Long-Term Follow-Up Clinic (LTFU) for Childhood Cancer Survivors— what do you see as the most important service that you and the medical team provide to patients?
Mary: Knowing that 65 percent of survivors will have a chronic health condition related to treatment, I would have to say that “screening” is the most important. And not far behind is educating the patients and parents on the potential long term effects as recommended by Children’s Oncology Group (COG) so they can live the best and longest life possible.
Editor’s note: If you are not currently a patient of the LTFU, we suggest you call to get an appointment to help ensure your health far into the future. (702-732-1493 and ask about the Long-Term Follow-Up Clinic) Childhood cancer survivors are eligible two years after their final cancer treatment. It does not matter where you received your treatment. As always, patients are accepted with or without medical insurance and regardless if a patient can pay for treatment.
Cure 4 The Kids: With so much experience in the childhood cancer field, what would you say is the best advice you could give to a parent whose child was recently diagnosed with cancer?
Mary: A cancer diagnosis is crushing. Helping parents and patients know that they are not alone in their journey is vital. I have asked parents to start a journal, to write their questions, trend counts, and partner with them in being available to address concerns. My best advice would be, that their “presence” is their child’s best intervention.
Cure 4 The Kids: What’s the greatest compliment a patient or parent has given you?
Mary: The biggest compliment was when a little patient asked, “For the nurse with the gentle hands.”