Advocating for Education of Myeloproliferative Neoplasms

January 22, 2020

Ann McMullin fought for her son to be properly diagnosed and is advocating for more education among medical professionals of rare diseases like her son’s essential thrombocythemia.

Ann McMullin knew something was wrong with her son, Cannon, beyond just an ordinary sickness, due to extreme symptoms and a high platelet count. While her son’s pediatrician agreed something was wrong and further testing was needed, the local children’s hospital did not. However, after persistence and staying by Cannon’s side, Ann eventually got her son into the hematology oncology department of the children’s hospital where Cannon was diagnosed with essential thrombocythemia (ET) at 8 years old.

Cannon is 11 now and has since bounced back from his diagnosis continuing to live his life and enjoy hobbies, like basketball and playing video games, while on treatment. It’s this positivity and strength throughout his diagnosis and treatment that led Ann to successfully nominate her son for the 2019 MPN Heroes program.

At the recognition ceremony for the 2019 MPN Heroes, CURE had the chance to speak with Ann about the challenging journey to get Cannon proper treatment and why she believes there needs to be more education around this rare disease.

TRANSCRIPTION

I was so frustrated, because I knew something was wrong. My pediatrician, who I've known for years and she's helped with all six of my children, she knew that I'm not an overreactive mother. I'm a nurse. My kids don't go to the doctor unless there is a limb fixing to fall off. So, when she did his lab and she looked at me and gave me the results, we both knew something was irregular.

She called (the) children's hospital, tried to get him in. They said, “No just re-check in a week or two,” and my pediatrician said, “Let's recheck in three days.” He'd almost doubled. She called (the) children's hospital again, they put her up they said, “You know, a lot of times platelets can be elevated because of a virus.”

So, as she was trying to get Cannon into the (children's hospital’s hematology oncology unit), they were pushing back. “Oh, it's nothing.” Well, when you put everything together, the weight loss, the no appetite, the pain with eating, we knew something needed to be done. And it needed to be done quickly because she kept monitoring his platelets and we were seeing the steady rise.

By the time we did get to (the) children's hospital, we went…for an emergency visit because he was projectile vomiting and, in such pain, but hematology (physicians) never came into the room to examine him. They sent us home again saying, “Have him rechecked in a week or two.” However, the pediatrician said that's not acceptable, bring them back I'll recheck him in three to four days. By the time we did get into hematology oncology, Cannon was direct admitted. He was critical.

They did a bone marrow biopsy the very next morning, of course, they had to do fluids to thin out his platelets. But this is, to me, the reason education is so important. We've got to get it out there to the pediatricians and to the primary care doctors and understand that yes, it is rare, but if this is happening, we need to react.


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