Rylan’s story: A fixed and full tummy

Our sweet son Rylan cried all of the time as a baby. We were told by our local pediatrician in Texas that he had acid reflux. For the first year of his life, we sat in a rocking chair and rocked him nonstop while he cried. One night, I fell asleep with him on the couch due to his daddy having to work the next morning. Rylan went from one end of the couch to the other, screaming the whole night. The next morning, I took him to the doctor.

After an ultrasound, a CT scan and bloodwork, we were told Rylan had “mono” and would never get it again. They were wrong. We ended up going back to the hospital many times, and depending on how bad the attack was, we would be there for one night, but the majority of them lasted between four and seven days. Life was a struggle. Rylan never felt good. He was always cranky. He must have had so much anger built up.

I made a promise to Rylan that we would never stop fighting for an answer for him.

Haley Grammer, Rylan’s mom

At a year and a half, Rylan was officially diagnosed with idiopathic pancreatitis. Our doctors in Texas didn’t know much about pancreatitis and honestly, it felt like they put Rylan on the back burner. We traveled to three different hospitals in Texas. A gastroenterologist in Dallas was honest and told me she didn’t know enough to treat Rylan.

We were ready for a better life for our sweet boy.

I did a lot of research on the best pancreatic doctors in the country, and found Dr. Amit Grover at Boston Children’s Hospital. He has been amazing. He cares about Rylan. We love him!

For other parents that are going through a complicated medical journey with a child, here’s my advice:   

• Research! Research! Research! I made a promise to Rylan that we would never stop fighting for an answer for him and I meant it. If you don’t like a doctor, find a new one. If you feel like you aren’t getting the answers you want, research a different hospital.
• Lean on your support system. Don’t do this alone. Find a support group. There are other parents going through the same thing. I know it feels like you are alone, but I promise you aren’t.
• You know your child better than anyone else in the world. Never let anyone make you feel otherwise — I don’t care if it’s a grandparent, third cousin, friend or doctor. No one knows your child better than you and you’ll always be their biggest advocate. Never stop fighting!

Rylan had his gallbladder removed at age three and his pancreas removed at age five. Today, he is a completely different kid — he’s 100 times better. He never ate before, and now he eats all of the time. He never complains of stomach pain, and when he smiles, he lights up the room. His feeding tube has been removed, and he is going to school for four hours a day now. Life is good!

Not only does chronic pancreatitis take a toll on you emotionally, but also financially. I spent many nights lying in a hospital bed begging and praying. This journey is far from easy and there will be times you feel like you’re in a dark tunnel, but just know that there is a light at the end of the tunnel.

We will forever be thankful for Rylan’s entire care team and for my parents, my grandmother, my husband’s mom and my husband’s granny who were always there for us.

Learn about our Pancreatic Disorders Program.