Rare cancer day 2019 graeleigh 1

Voices of Rare Cancer: Graeleigh’s Story

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Graeleigh was diagnosed with fibrolamellar after a long battle with stomachaches. First the stomachaches started out sporadically but by the time she was diagnosed they where becoming chronic, happening almost every day.

Graeleigh had her annual well child check with her pediatrician in November of 2018. Besides the usual, making sure she is getting enough calories and keeping up with her endocrinologist appointments, there was no explanation of why she wasn’t growing or gaining weight and no real explanation of the stomach aches.

At the beginning of January I made her another appointment with her pediatrician. I needed help, I needed answers, I was getting so frustrated with all the stomach aches, her lack of wanting to eat even after claiming she was starving, her calling me at work to pick her up…..I just wanted answers!!!

On January 14th we went in for that much needed appointment. The doctor did her usual exam and agreed to order an ultra sound, KUB and lots of blood work.  

The morning of January 17th we went in and had all the testing done. I dropped Graeleigh off for school and went on my way to work. By 10:30 that morning, I was called back into the pediatrician’s office to go over the test results and by 12:00p.m. I was on my way to the University of Michigan/Motts Childrens Hospital (she was already established with the endocrinologist there). I was told to go through the ER but that the oncology/hematology floor was already notified that we where coming. Her blood work had come back abnormal, not just with her liver but with her kidneys and her coagulation tests. The ultrasound showed a large mass on her liver. Graeleigh was admitted to the oncology floor and spent the next week there having more blood work done, as well as an MRI, CT scan, another ultrasound, PET scan, biopsy and a port placement. After meeting with many doctors, it was decided that we would go home for the weekend and be back on Monday to do a few other things and then start chemotherapy.  During that weekend, Graeleigh’s father decided to do some research of his own and ended up finding the Fibrolamellars of The World Unite Facebook page and was put in touch with Dr. Kent and Dr. Herdl at Rush University in Chicago. After speaking with them via phone, we decided to seek a second opinion.   

On February 4th we met with Dr. Kent and Dr. Herdl. We listened to what they had to say and what they recommended. We went back to our hotel and talked it over, though we already knew in our hearts before we even left what needed to happen.

On February 6th, Graeleigh had a three pound tumor and 40% of her liver removed, and, if I remember correctly, six lymph nodes removed as well. They got clean margins!!! The surgeon felt confident they had gotten everything they could, outside of her lungs, which we knew about and knew we’d have to address them at another time.  After a total of 14 days in Chicago, we went home. 

Today, Graeleigh still goes to Rush every three months for scans, blood work and to meet with Dr. Kent and Dr. Hertl. She also goes to DeVos Childrens Hospital in Grand Rapids, Michigan where she sees Dr. Cornelius, who works closely with Dr. Kent. Her treatment week starts off by getting her infusion of immunotherapy (Opdivo) and then an oral chemo (Capecitabine) at home twice a day for a week, along with an interferon injection on days one, three, five and seven.  Despite doing treatment every other week, she is thriving!!! She has gained 22 pounds and has grown almost an inch since the removal of the tumor. She loves the beach, riding her bike and hanging with her friends every chance she gets. She recently turned 12 in August and started the 6th grade. 

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