Jonah Beeson

Written by Jonah’s mom, Michele Pelfrey

Last weekend, I watched my son, Jonah, play outside with his sisters and cousins. I sat in a chair on our deck and watched my sweaty little boy run around our yard with a super soaker trying to spray the other kids. He bounced around a blow up pool, getting splashed with water, grinning ear to ear. Later, I watched him sit down for dinner and eat a full meal, with a huge smile on his face.

It was the Fourth of July. We moved to the front porch and I sat, Jonah on my lap, kids all around me, my husband by my side, fireworks catching the eyes of each small child. We were a family. Finally!

This event seems like a typical one in the life of many families. To us, days like this used to be few or absent.

Jonah, age 5, has Cystic Fibrosis (CF). This, in itself, was diagnosed at 11 days old and of course changed the direction of family. I had made a plan though. My kids would all be successful, happy kids. I had told them that everyone has their “thing.” CF, glasses, weight problems, etc. Life goes on and we adjust. This attitude was what kept me, my husband, and my children going. 

Despite our positive thinking, when Jonah was two years old, things started to go terribly wrong. His abdomen became swollen like a watermelon. He would lay on the floor and scream, sometimes for hours. He would throw toys. He was unmanageable. “He has behavioral issues” was the answer that was given to me time and time again.  Being a Special Education Teacher gave me some insight into this and I just did not believe that behavioral issues were the reason that this child was so hostile and miserable. My other children were well behaved, well adjusted children. What was I doing wrong? My mother guilt was making me miserable.

I traveled from doctor to doctor, belly X-ray to belly X-ray. Jonah’s swollen stomach just became “Jonah.” No answers. Most doctors believed that Jonah’s distention was related to CF.

Amazingly, Jonah learned how to talk. This was a blessing. Not only to hear the words “mommy and daddy,” but he started saying, “My belly hurts” during his tantrums. “Pain! that’s it,” I thought. “He needs to be helped.”

Again, doctors did not know what to do. They would admit Jonah to the hospital to “clean him out,” with enemas. No luck. Eventually, the doctors started talking about behavior issues again. “He can’t be in that much pain,” they would say. “He is using it to get attention. Control issues. Maybe you need a parenting class.”

A year later, I was still trying to help Jonah with no success. I was unable to keep a teaching job. Nobody knew what to do when Jonah would lie on the floor and scream. I would be called to come home immediately. With no substitute in place, having to leave a classroom of children, all who had their own behavioral issues! Finances were difficult without a steady job. We were all breaking down, and I had had enough!

One day, I marched into the gastroenterologist’s office and sat there while Jonah lay on the floor screaming. This time, I did not intervene and boy did I get in fast! (Of course, some onlookers misunderstood the cause of his pain and thought that my parenting skills were lacking…) Our regular doctor was on vacation, so we saw someone different. He believed that Jonah needed a “clean out.” I was going to fight the admission and then allowed it, with the idea that maybe, just maybe, someone would figure this out. I went home to pack some things.

Jonah’s caregiver at the time agreed to go with me. I was really starting to break down. When we got to Children’s Hospital, we were told to wait by the admissions desk. What happened there changed the whole course of our lives.

I overheard the receptionist talking about another child who had pancreatitis. Jonah’s caregiver was a nurse. I asked her what pancreatitis was and immediately a light bulb started flashing in my head. I asked her what the test was. She stated amylase and lipase.

When we got to the room, the nurse was preparing to start an NG tube for the cleanout. I asked to see the resident. I asked for Jonah to have a test for amylase and lipase. He stated that it was unnecessary. I asked to see the doctor overseeing him. He too believed that it was an unnecessary test. He explained to me that people with CF do not have a working pancreas so there was no way that Jonah could have pancreatitis. I asked him how he knew that his pancreas did not work. “It’s in his chart” was the answer that I was given.

So, like a nutty woman, I demanded the test realizing that I had absolutely no idea what I was talking about and no reason to believe that Jonah had pancreatitis. I had a feeling inside of me that I had never felt before. I was going to get this test and would do anything to get it. I made a scene, not a pretty scene, demanding the test and threatening attorneys. I was of course labeled as “one of those moms.” And the test was ordered. I then was left in a room with a screaming three year old feeling guilt that now he would need a blood stick and that I had caused a scene. Was I going crazy? Every doctor and nurse looked at me with a “she’s nuts” look. I was miserable, scared, and nervous.

The test was completed and a few hours later the doctor came into the room. He could not look me in the eye. Jonah had severely elevated amylase and lipase levels. He had pancreatitis. He would not be allowed to eat anything by mouth, since the treatment was to rest the pancreas. I was to sit in a room with a screaming child who could not eat and Jonah was given no pain medication.

Jonah’s labs were drawn daily. His pancreas was looked at by scope. A few days later, we were sent home. His labs were still elevated, nothing had changed. “Pancreatitis always goes away. He will be fine” I was told. Jonah was on a full diet. No pain medications. We resumed the scream fest.

A few weeks later, labs were drawn again. They were much worse. Jonah was put back in the hospital and started on TPN and Lipids. This was supposed to be for a few weeks. He was to have nothing by mouth. Eight months later, he was still on TPN. No pain medication.

Our family life was destroyed. We were feeding our other children in a secret place. Jonah had a port and was an active 4 year old hooked to a pole all day, screaming in pain. His liver enzymes were becoming elevated from long term TPN use. The future looked very bleak.

Jonah had an ERCP a few months before, and I decided to contact that physician for a second opinion. He believed that Jonah needed a pancreatectomy/islet cell transplant. He would consult with our regular gastroenterologist. I went home to look this up. What I found scared me to death. Jonah was only four years old. Could we do something like this?

Meanwhile, Jonah was taken off TPN and given a J-tube for feedings. At this hospitalization, Jonah’s regular gastroenterologist took me aside. He told me that if Jonah had a pancreatectomy/islet cell transplant, he would most likely die. If he survived, he would have worse problems then pancreatitis. I decided not to pursue the operation.

Jonah was given pain medications in the hospital and was started on Ellevil in the evenings to help him sleep. We were given a bottle of Morphine for emergencies only. Jonah would react horrible to the morphine. He would become agitated and violent. We could not give it to him.

Jonah continued to complain of belly pain. His tantrums turned into angry moments as he grew older. He acted as if he hated everyone and everything. We finally took him to Mayo Clinic where the pain team started him on Celiac Plexus Nerve Blocks. These nerve blocks probably saved our family. After each nerve block, we would see a happy, typical little boy for a few weeks. Unfortunately, it was short lived, and the blocks can only be done every few months.

One day, the nerve block had worn off. Jonah was crying about belly pain. I would hold him and he would tell me that nobody is helping him. He hates his belly. I broke down too. I called back the doctor who had recommended the pancreatectomy/islet cell transplant the year before. We made an appointment.

It happened that the day after our appointment we were leaving for Mayo Clinic. This doctor again recommended the surgery. That evening, I started researching the surgery. I sat in bed with my laptop. What I found made me cry. The first site I came across was the Pancreatitis Association. I read stories of other people and of other parents. I read about the amazing man that could save my child, Dr. Sutherland. He was going to be the doctor I was looking for.

When we got to Mayo Clinic, I asked the gastroenterologist about the surgery and Dr. Sutherland. He agreed to help us meet him. He left a message for Dr. Sutherland at the University of Minnesota Medical Center, Fairview (formerly called Fairview-University Medical Center).  Within a few hours, I was on the phone with Ann Marie, Dr. Sutherland’s assistant. Ann Marie was my angel that day. She was able to get us an appointment with Dr. Sutherland the next day before we would drive the 13 hours back to Ohio.

Jonah had a total pancreatectomy/islet cell transplant on June 11th. He is absolutely pain free. His smile has returned and it is seen often. We have eaten dinner as a family on several occasions. He is excited to start Kindergarten and he wants to play soccer on a local pee-wee team. Every day we laugh and say, “Jonah how is your belly?” He grins ear to ear and says” GOOOOOOOD!”

Dr. Sutherland gave not only my child a new life. He gave our whole family a new life. We have been able to enjoy our children more in the last few weeks then we had in the last few years. Jonah now has a spark within him that we had never seen before. He wants to do many things. Yesterday, he planted a flower garden, something that he has wanted to do for the past two years. He was outside all day long, drinking Gatorade and getting dirty.

It is unfortunate that children with pancreatitis and their families are treated in such a way that can be emotionally devastating. I hope that parents of children with this disease will be able to have less of a fight in the future. My son lost his early childhood. Dr. Sutherland has given him his childhood back. He has given us our family.

4-20-2005 UPDATE: Jonah is just about 1 year post transplant. He is a star soccer player and is getting ready for Kindergarten graduation. Jonah eats us out of house and home and has gained 4 pounds in the last 6 months. 

Yesterday, I picked Jonah up from school. I saw him swinging on swings across a field where the school has recess. When he saw me, he got off the swing and ran across this open field to greet me. I watched a grinning, sweaty little boy running toward me. When he reached me, he hugged me around the waist and stated" I had a great day!"

Thank you, Doctor Sutherland!