Sam’s Story

Blessed would be the word I would have used to describe our family. Happily married, Rocco and I had been given two adorable, perfectly healthy boys, Sam (then) 5 and Matthew (then) 3. Life was full, joyful, busy, a handful at times –but definitely Blessed.

Probably because our lives seemed so “typical,” marching along like many young families across America, we really felt blindsided when Sam got sick. At first we thought he had the stomach flu when he began vomiting in Kindergarten. It was soon very clear though, this was much more than a tummy bug. As mothers, I believe we are given an intuitive gift of knowing our children. I knew something was wrong with Sam… I just didn’t know exactly what.

Our journey through the medical world began. Having a wonderful Pediatrician and Staff, Dr. George Hobeich led us through the process of elimination trying to uncover the mystery of what was wrong with our son. He had constant stomach pain, vomiting on and off, diarrhea, pale, nausea, lack of energy, headache and joint pain. We tried various medications. No relief. His doctor ordered Blood Work, Stool Tests, Upper GI Xray, Allergy Testing. All came back normal.

It was now February and 8 weeks had passed when we ultimately arrived at the Pediatric Gastroenterologist who ordered the first Endoscopy.

Rocco and I waited as our precious little boy was sedated, as the doctor went into his tiny little body with a scope and a camera, taking tissue samples out of his esophagus, stomach and small intestine. With great fear I remember being told the initial diagnosis. An ulcerated stomach and esophagus, hiatal hernia and Acid Reflux. While fearful, there was great relief to finally have an answer for our baby’s pain. The treatment plan would be a 3 week round of triple treatment – 2 Antibiotics and an Acid Blocking medication. The goal being to kill the H pylori bacteria which had ulcerated his stomach. He also needed to avoid any “reflux” inducing foods like acidic items, chocolate etc, don’t eat 2 hours before resting, elevate the head off the bed.

Diligently we followed doctor’s orders. He wasn’t better. We tried various medications, switched Acid Blockers. No results. More bloodwork, ultrasound exam, voiding cystogram test, motility exams. By May, his GI wanted another endoscopy. This revealed that his stomach was no longer ulcerated, but he still had Acid Reflux and an ulcerated, inflamed esophagus. He was switched to a different medication but the constant stomach pain and nausea continued.

Throughout this journey I spent hours researching on the computer and in books trying to figure out how to help our son. The diagnosis of Acid Reflux felt incomplete. I really felt like we were missing something.

As a Christian, I had faced other obstacles in my 36 years. I had strong faith. I loved God. However, not until now had I ever been asked to TRUST my God… in this way… with my child. During this time my prayer life took on a new meaning. While tirelessly searching for how to help Sam, I relied on the guidance God provided inside.

Summer was here and our family was desperate. We were living with a child who had chronic stomach pain and every solution that we tried
…failed. This would be the summer that we would meet an amazing Tucson Allergist named Dr. Uwe Manthei, a brilliant man and a good
listener, Allergy testing conducted on Sam still revealed no answers. However a new ally was onboard and Dr. Manthei would prove to be a champion for our cause.

By November, my hours of research had revealed a new disease called Eosinophilic Esophagitis or EE. Sam’s symptoms seemed to match exactly, as the symptoms can easily mimic Acid Reflux. At the third endoscopy and PH Probe Test, armed with this new possibility, I specifically asked that Eosinophils – a type of white blood cell – be looked for upon biopsy. When the pathology report came back it not mention Eosinophils. I was told there were none there. Diagnosis once again – Acid Reflux and Esophagitis. We were given two choices, to return to the acid blocking medications which had never given him symptom relief and had in fact given him additional side effects OR consult with a Pediatric Surgeon for a Fundoplication Surgery done for uncontrollable reflux.

We stood at a turning point. Eleven months, 3 Endoscopies and failed medications had passed – without relief for our child. God clearly told
me this surgery was NOT the answer and to get a second opinion.

One year almost to the day that Sam got sick we sat at Phoenix Children’s Hospital for our Second Opinion. Upon re-reading the biopsy slides from all three endoscopies, Phoenix Children’s Hospital pathologist found in fact there had been eosinophils in our son from the very beginning of him getting sick! A diagnosis of Eosinophilic Esophagitis was made. Finally, finally we could help him.

But the journey, we found, was only beginning. This disease it seems is an Immune Response where the body sees proteins in foods as the enemy and sends white blood cells, called eosinophils, which attack the esophagus. This causes pain, inflammation and erosion. Currently there is no cure for the disease – Eosinophilic Gastrointestinal Disorders. The known treatments include dietary elimination of allergenic foods, steroid medications or ultimately, Elemental Diet.

For Sam, trying the swallowed steroid Flovent, resulted in tummy pain and thrush. Unfortunately, traditional allergy testing (Blood and Skin
Prick) revealed no answers as to what Sam might be allergic to. Taking all foods away from him and putting him on an Elemental diet of “formula” seemed much too drastic to us – at the time. We didn’t know what to do and it seemed no one else did either.

On a February Saturday morning, with a very heavy heart, and tears streaming down my cheeks, I knelt and prayed to Jesus. I begged HIM to please give me the wisdom and enlightenment of what to do for Sam. I felt out of answers. I was scared. I was tired. I was desperate. But I knew God would lead.

That night I went online and did the same search that I had done 100 times before. But that night, the first 3 hits were articles I had never seen before. Each article told our son’s story – exactly. A doctor at Children’s Hospital of Philadelphia (CHOP) was referenced. CHOP is one of a few centers in the country studying and treating this rare new disease! God had so clearly answered my morning prayer and tears of gratitude and faith now streamed down. I had hope.

With Dr. Hobeich’s help we made arrangements and had an appointment with CHOP’s Dr. Jonathon Markowitz for May. He believed he could help Sam. Dr. Markowitz and his assistant Kathy, have come to be angels on earth for our family. With his help and the “Team Approach” of treating this disease, an allergy test called Patch Testing revealed 6 foods that Sam was allergic to. We were sent home to do a difficult but not impossible elimination diet taking out all wheat (gluten), potato, pears, peas, lamb and apple from his diet. In August we returned to Philadelphia and we were elated to find the diet seemed to be working! His biopsies were substantially better. This was great news! We returned home to start Second Grade and he felt somewhat better. We really thought we were on our way. However as the school year continued, his symptoms worsened.

Spring Break found us back in Philadelphia at CHOP and we were stunned to find his biopsy count was very bad again AND he had developed even more food allergies. Now he was also allergic to Soy, Rice, Milk, Eggs, Tomato, Peaches etc. Disappointed but not defeated, we returned to Tucson to attempt this seemingly impossible task. What would we feed him?

Within weeks it was clear no matter what we fed him – he had pain. At all costs we had tried to avoid the last known treatment. Elemental Diet – a Hypoallergenic Amino Acid Based Formula, usually administered either via NG Tube down the nose or a surgically placed feeding tube into the stomach. Sam wanted out of pain. He was tired. He asked for the feeding tube.

With his doctor’s advisement, we all agreed, it was time. We had done our best… but it had not worked. On April 25,2005 our brave 8 year old son waved goodbye to us as he rode a hospital bicycle into the operating room at Phoenix Children’s Hospital. A G-tube (feeding tube ) was placed into his stomach and he faced 8 weeks of nothing by mouth but ice and water. Four times a day we fed him his formula medical food
through his G-tube. It wasn’t easy. There were ups and downs, but within two weeks the pain he had felt for 2 years was gone. Now came the true test? Had all of Sam’s food deprivation worked? Were the eosinophils gone?

We were elated when the biopsy results came back Perfect! The eos were gone and slowly food re-introduction could begin. It was a Kodak moment that first food – grapes.

I had the camera ready and captured his elated smile to be able to eat an actual food again. Within minutes he came to me and said his
tummy hurt. We tried grapes 3 different times, each time, tummy pain. He failed grapes. His next two foods of banana and carrots seemed to be okay and in fact biopsies in August confirmed this. We methodically continued to reintroduce one new food every week or so, following CHOP’s strict protocol. Some foods he failed symptomatically, but he now had a diet which included chicken, sweet potato, pinto beans, watermelon, banana and carrot. It was time to make sure the 4 new foods were not reacting inside.

His endoscopy would be November 1st, the morning after the biggest candy collecting day of the year. The candy he could not have a taste of. That was hard for him. Visually the doctor said things did not look good inside. We had to wait for biopsy results though, to get a true answer. The call came. The biopsies were bad. Most likely he was reacting to one or more of the 4 new foods. This meant back to banana, carrot and we chose to keep pinto beans.

A typical day for our Harelson Third Grader, is to take two lunchboxes with him – one with a banana and water for “regular” lunch in the
cafeteria and one packed his Formula medical food and supplies. Everyday at 10:00 am while his class races to recess on the playground, Sam joins the school nurse, Janice, in the office. She sits with him as he feeds himself through his G-tube. Janice and Sam have become good buddies over the last 4 school years. She has become the gentle compassion he needs when away from me during the school day, another angel on our path. Harelson Elementary, headed by Principal Andy Heineman, has been a safe haven for our family, accommodating Sam’s needs at every step. We will always be grateful.

This disease has more questions than answers. It truly seems so unnatural to ask a child to not eat food. To trial certain foods and then have to take them away again – It is absolutely heartbreaking. The way in which our son has carried his huge cross has awed and amazed us. Wise beyond his years, his courageous spirit is contagious. You see this really is his story, told through a mother’s love. But it is him who has endured the pain, the tests, the medication, the surgery, the food deprivation, the cravings, the Everything. It is him who is our Hero. I am humbled and honored to be his mother. We have watched him with his quiet strength, develop in his faith, grow in his character, shine with empathy for others.

If you saw Sam, you would never know unless we told you that he has this disease. You would surely never guess he had a feeding tube in his stomach. He runs, plays, wrestles like all 8 year old boys do. We are grateful that he “looks” and “acts” so normal. We are grateful for all of the ”normalcy” he does have in his life: his friends, his brother, his school, his grandparents, his love of baseball and video games.

However, part of what children with this disease can face is discrimination, because they do look so good on the outside, some find it hard to believe they are really sick. These kids need our compassion and understanding. The damage and pain is ravaging them on the inside, in a place you cannot see. But live with an EGID child and you will know the truth. Hold them, as they cannot sleep at night because of the pain in their stomach. Follow them as they reflux and run to the bathroom. Watch them as they play hard outside and then collapse on the couch saying ”mommy my tummy hurts so bad!” Wait for the phone call (for the third time this week) from the school nurse to please come pick up your child as he is too sick to stay. Observe them as they fast for their next endoscopy procedure. Grieve for them as they put their face in the plate of family dinner that they are not allowed to eat, but just want to smell. Cry when they decline their best friend’s sleepover because morning will be too hard to not eat favorite waffles. Celebrate at a Birthday Party until you realize everyone can eat the Pizza and Cake , except for one. Then you will know. You will know the grief of watching what a child with this disease lives day in and day out. It is courage defined.

The other important facet to know is that the family really lives the disease. Our youngest child, Matthew prays for God to please make Sam’s tummy better. My heart broke the day he asked me “Mommy do you think I will need a G-tube someday too?” In his little 5 year old mind he worries that he will get this disease. And there are no guarantees he won’t. My spirit cries for the hours taken away from my Matty because I was so focused on trying to help his brother. Matthew has the soul of a gentle giant, he has been my laughter and my love. Equally he is my hero with his patience, understanding and compassion. The emotional toll is immense. The financial burden incredible. Sam’s Medical food treatment is not covered by our Insurance Health Net, and it costs us $1200 per month. Much of the last three years have been spent appealing insurance company denials for medical treatments and coverage that Sam has needed to treat this disease. Far less than this illness could cripple many families, and yet as difficult as it has been and continues to be, we have been given blessings beyond belief.

I have to say, in the midst of our family being in crisis for three years, our marriage has not only strengthened, but sweetened too. As a
woman, wife and mother I could not have faced or conquered this battle without the amazing strength, help and support of my awesome
husband. I will forever be grateful for all of the ways that Rocco was the logic to my emotion, the pillar when I wanted to crumble, the quiet
wisdom, the love that fueled me and of course the humor that defines him.

As a woman, I have learned a lot over these last 3 years. I have learned the depth of God’s love for me and for our family, the selflessness of family and friends, the caring from strangers, new bonds with families of the same plight. I’ve learned there are no promises or guarantees about tomorrows, about answers, about cures. I’ve learned life isn’t always fair or understandable. I’ve learned about human error and about forgiveness. I’ve learned how to cry, begging God to let me take my son’s pain for him. I’ve learned to trust that God has a plan and will never abandon us. I’ve learned I have to ask for help. I‘ve learned to not be afraid to ask questions, to research, to be prepared. I’ve learned the definition of patience and blind faith. I’ve learned to be strong and from where my strength comes. I’ve learned how to listen to that guiding voice inside who has led us the whole way through. I’ve learned to never give up on your child.

We are given what we need in life. My needs have certainly been sustained and nurtured by my own mother’s love throughout this journey. For each of you (and you know who you are) that have walked this road with us, hoping, crying, praying and rejoicing…thank you. I never knew a family could be as loved or supported as we have been. For all of the children who share this disease, they and their families too, deserve the applause and recognition for what they endure each day. You are heroes.

I wish I could say Sam’s journey through this illness was over. I can’t … Yet. In fact, as I write, he is admitted at University Medical Center with acute abdominal pain. Led by World Renowned Pediatric Gastroenterologist, Dr. Fayez Ghishan, and a caring Team of Medical Staff, we are hopeful to uncover another “piece” to this giant puzzle of Sam’s illness. We face some difficult decisions. It is a long road ahead… short of a miracle. But one day at a time, we move forward. This has been as much a journey through an illness as it has been a journey through faith. I know in my heart that Sam will one day be free from this disease. I believe it. I trust. I’m his mother and I’ll never give up.

Blessed is still the word I would use to describe our family.