Surviving a craniopharyngioma

In the winter of 2013 Macey’s grandma, sometimes accused of being a bit of a “worry wart”, noticed her squinting. There had been a few other odd things about Macey’s health over the last year: her two-years younger little sister had caught up with her in height, while her older sister surpassed her by 10″. And she was constantly thirsty. The doctor had assured them that each child develops differently but her eyes were too much to ignore.

They first saw a general ophthalmologist who then referred them on to a specialist at the Casey Eye Institute in nearby Portland, Oregon. There it was determined Macey had RAPD, an optic nerve condition, and an MRI was ordered. On February 18th after the MRI, they got a call that no parent ever wants to receive: the MRI had found a massive tumor, the size of two golf balls, situated atop the pituitary gland. This explained the squinting, which was actually causing blindness, now permanent in one eye, and also the lack of growth and constant thirst.

Macey was admitted to Doernbecher Children’s Hospital the very same night. 36 hours later she underwent a nine-hour brain surgery and her amazing surgeon Dr. Baird and her team were able to remove the tumor successfully! Due to the size of the tumor they were unable to save her pituitary gland. Without the hormones produced by the pituitary, she now faced a life full of complications: her body had no adrenal function, which is life threatening, no thyroid function and a specialized type of diabetes. Without regulation of hormones she wouldn’t be able to grow, let alone go through puberty, without the assistance of medications. Her life, and her family’s, changed rapidly to accommodate a regimen of daily medications and the recovery from brain surgery, which can last for years. But they thought that the “hard” part was over.

On August 5, 2015 at one of her routine MRIs, her parents heard the word “tumor” for the second time– but this time there were two, growing in the same spot as the original. Her parents hearts, barely mended, broke again. Her doctors immediately began putting together a new treatment plan which would include a wait and watch, then a new round of surgery. But this time they knew that the tumors could continue to come back after surgery.

But then a ray of hope came. Through a group on Facebook of fellow craniopharyngioma survivors they were told about a study at St. Judes on her tumor that included an experimental form of targeted radiation known as proton therapy. Only about a 100 kids a year are diagnosed with her tumor, making it difficult to treat with success. Her mom, Courtney, emailed the doctor and received a reply in fifteen minutes! The news was what they had hoped: he told her that the research at St. Jude’s has so far been very successful and gives the best chance to stop the current growths as well as a future reoccurrence. In the Fall of 2015 Macey left her home in WA state and spent 6 weeks in Florida at the University of Florida Proton Center for proton radiation treatment. Macey had 30 treatments. Currently she returns to St Jude every 90 days for follow up and is currently stable.

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Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.