Shauntelle's story: 5,000 miles away for a cure

08/21/2021

Patient Stories

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I couldn’t explain to my friends why I always had water with me, or why I couldn’t go on long car trips because I was frequently running to the bathroom. I had a busy life at this time, including a large group of friends who were basically sisters to me. I started pulling out of school trips and sleepovers, and I began avoiding most activities involving limited access to water or a bathroom.

I started searching for a diagnosis on Google, which became my only source of information at one point since I was too embarrassed to share what was going on. I eventually began visiting doctors frequently to complain about the rashes, but I was always sent home with antibiotics for a tough virus or infection. When I mentioned my thirst, I was only warned of the potential for diabetes. When blood tests were taken, the results were always normal.

Once I turned 16, my mother surprised me with a weeklong trip to Spain. During the trip, she began to realize just how much water I was drinking and how often I was using the bathroom. I guess I was good at hiding it for a while! She was shocked, and began to worry that I would somehow drown my body with water. I started seeing a therapist, who was convinced my water intake was a coping mechanism for anxiety, essentially comparing me to an alcoholic. This was so hard for me to hear – I drank water all of the time because I truly felt dehydrated. I didn’t feel like an anxious person, either. I couldn’t wrap my head around this, but I didn’t second-guess the theory since it was coming from a professional.

I started cutting down my water intake, which only made me feel crazier! This was an incredibly emotional battle, and I felt so lonely. I was hiding water under my bed each night to convince everyone I was improving. I also had another distraction – the rashes. They got to a stage of constant bleeding, and some of the areas were turning green. This became the worst pain I had ever experienced, and the rashes were still persistent after a year of multiple different antibiotics.

In my next appointment with a new doctor, I elaborated on my ongoing issues and displayed my rashes. She advised us to head straight to the emergency room, telling us to stay there until we had answers. When we arrived at the hospital, I was immediately admitted due to the severity of my rashes. Each observing dermatologist was stumped, until one who had just returned from maternity leave came to see me. “I heard you’re a tough case,” she said. “I’m ready to do whatever is necessary to figure this out and give you a diagnosis.” This was one of the first medical experts we began to trust at this point.

The next time I saw the doctor, she asked me why I thought I was vomiting all the time. I told her it was from drinking so much water, and explained my supposed anxiety. She immediately started asking questions. “Why haven’t you mentioned this before?” I never assumed the rashes and thirst were related, so I didn’t feel the need to mention the thirst. I was also still embarrassed about it.

My doctor quickly ordered imaging of my brain and biopsies of the rashes. She explained her suspicions of an extremely rare, cancerous disorder – only five cases had ever been reported in Ireland. She didn’t think the test results would come back positive, as the disorder was so rare, but it was worth a shot.

I was listening to music in my hospital bed on May 29, 2015, just a few weeks later. My mother had just left the room to grab some food from downstairs. Just as she left, a team of doctors walked over to my bed. I remember dreading the thought of receiving a diagnosis without her next to me, but it immediately happened. They quickly told me I had a rare cancer called Langerhans cell histiocytosis (LCH).

I asked what was going to happen next, but they knew just as much as I did. I knew nothing about cancer beyond the expectation of chemotherapy, which was confirmed. Before I could ask any more questions, the conversation was cut short and the doctors were leaving. I remember shouting for them, begging for someone to write down the name of the cancer so I could show it to my mother. I was so confused, and the entire interaction was a whirlwind. I was in complete shock. My eyes started filling with tears and my face turned red. I remember how hard I was crying, thinking I was about to die.

I was in an open ward, and emotion suddenly fell off the faces of people around me as they watched me crying, sitting alone. I had become friends with many of these people, and many had been hoping for hopeful results with me. “I have cancer, I think,” I told my mother as she walked in. Her face became pale, and she looked as if she was about to faint. She stormed into the hallway of the hospital, shouting for a nurse. She was so angry that these doctors would give me a diagnosis without her present. She screamed for the doctors, furiously throwing out every cuss word she could.

I had never seen my mother so upset. She was disgusted with how this was handled, but a nurse continued to sympathize with her, explaining how the doctors wouldn’t return until the next day.

She crawled into my bed, and we cried together for hours while searching for more information on LCH online. It really only made matters more confusing, and we wished we had more of an explanation. I was hysterical, and I cried in her arms. I didn’t sleep that night; I didn’t know if the future I was planning for myself was still an option. I was scared of what treatment would look like, and scared for what my chances for survival were.

So far, cancer was confirmed on a few spots of skin and on my pituitary gland in my brain. I didn’t initially start with chemotherapy, but instead waited for a team of oncologists and endocrinologists to figure out a treatment plan. In the meantime, I was diagnosed with diabetes insipidus, which happens to many people with pituitary issues. This explained my constant thirst and the following vomiting and dehydration. My organs needed water, but my body wasn’t able to retain it. This was a relief in some kind of way, knowing it wasn’t a mental addiction. Even though we were finally starting to get answers, the actual cancer diagnosis was heartbreaking.

We lived an hour from the hospital, so my family ended up renting a temporary place nearby during my lengthy inpatient stay. In Ireland, it’s common to hear how the mother is the foundation holding everything together in a family, and I began to see how this applied to my mother. She held it together, and pulled us through the aftermath of this horrible diagnosis.

We approached summer as a team of doctors and researchers worked on my case. They honestly seemed just as educated about this rare type of cancer as we were from our online searches. My mother began to do more research, which led her to Dr. Kenneth McClain at Texas Children’s Hospital in Houston, Texas, in the United States.

Dr. McClain, director of Texas Children's Histiocytosis Program, is a world-renowned expert on histiocytic disorders, alongside his colleague, Dr. Carl Allen. We learned this team sees nearly 100 cases of histiocytosis each year, with many patients traveling to them for treatment. My mother found a way to contact him, but I wasn’t sure if he’d respond.

Dr. McClain responded, but his initial comments were generic. He needed to work with my care team in Ireland for more information on the severity of my case. He mentioned a potential chemotherapy drug called cytarabine, and started working with my doctors to begin administering it. I had a port placed, and I soon began treatment. I also started taking hormone replacement for my diabetes insipidus. I knew we would eventually need to travel to Texas, mainly because Dr. McClain became very interested in the complexity of my case. In the meantime, I tried to keep my life as normal as possible. I attended school, but soon became too weak to go at all.

Following eight months of chemotherapy and worsened skin rashes, I raised enough money to go on my first trip to Houston. We initially met with an Irish organization, the Gavin Glynn Foundation, which helps kids suffering from cancer travel to receive treatment abroad. John Glynn, the father of Gavin, reached out to us and offered to help us tremendously.

We finally traveled to Houston in March 2016 to see Dr. McClain. When I arrived, my health was in a poor spot and I ended up receiving an extensive surgery on my lesions. Dr. McClain changed my treatment, and recommended we come back to Houston as quickly as we could so he could track my progress. We were able to travel back and forth to Houston for a bit, but my health started deteriorating. I felt as if things were improving while I was there, but things would get worse when I got home. I wanted to be a full-time patient in the United States, but we couldn’t afford it at the time. I was on so many different treatments and protocols and it was hard to keep our health team informed on how I was doing.

My cancer was spreading to my gastrointestinal tract and other parts of my body, and the pain became unbearable at times. I had to face many procedures in Ireland as my health worsened, and it felt like the cancer was winning. I became depressed – it was hard to face the price tag that came with getting better.

In January 2017, we flew home to Ireland with heavy hearts after our appointments in Houston. Dr. McClain was doing his best, and he completely understood our financial struggles, but we all knew I needed to be there full-time if it meant saving my life. We were approaching our next trip to Houston a few weeks later, and I decided to go up to my room one day to film an update of my situation for my YouTube channel. I still felt broken inside, and the vibes just weren’t the same in our house, so my mom decided to cook our favorite dinner to cheer us up. I contemplated even uploading my video, as I was crying in it and didn’t want to be negative. Nevertheless, I hit upload on YouTube and Facebook. To my surprise, the video went viral! I was on so many online articles, not to mention talk show and radio segments. My face was suddenly everywhere in just a matter of days. We raised over $600,000!

My next trip to Houston was meant to last one week, but my health worsened once I got there. I was immediately pulled off a new chemotherapy treatment when it started to cause nerve damage. I remember feeling a small pain at first. I thought it was a toothache, but the pain suddenly became unbearable. I was diagnosed with trigeminal neuralgia, a chronic condition impacting the nerves on my face. My pain was excruciating, but we eventually managed it. Dr. McClain was worried, and he urged us to stay in Texas. He wasn’t comfortable with me flying home, even if we planned to move into our new apartment near the medical center just a month later. It was too risky, he said, and he wanted to quickly start me on a new, very harsh form of chemotherapy in an attempt to eliminate my cancer.

I was upset to hear I wouldn’t be able to go home and say goodbye to family and friends, but I trusted my doctor’s opinion and believed this was the right decision. Since I was inpatient, my mother would stay with me during the night at the hospital while finalizing plans for our apartment.

During this time, I met Mark Wallace, the president and CEO of Texas Children’s, and his lovely wife, Shannon. They knew of me because of my viral video and greeted my family with true kindness. We also met Dr. Jen Arnold, a former Texas Children’s neonatologist and reality television star. I was on a lot of medication at the time, so my mom was sure to film the meeting so I could remember what happened.

We found a very nice apartment just five minutes from the hospital, and the Gavin Glynn Foundation began to graciously help us out with rent. Gallery Furniture, alongside the Wallace family, helped us furnished our apartment. We were brought kitchen supplies, bathroom furniture, coffee tables, an extra sofa, a sofa bed, shower and hygiene packages, and so much more. So many people wanted to help us, and we were in awe.

We met the family behind an organization called Brennan’s Buddies, similar to the Gavin Glynn Foundation. They became great friends of ours, and we’ll always respect how selfless and helpful they have been in helping us get adjusted to Houston. We started going to a nearby church, and our community began helping us in so many unbelievable ways. I didn’t have much personal faith before coming to Houston, but it has grown immensely in the past year since coming here.

I started intensive chemotherapy in March 2017. I was inpatient for a week out of each month for the first few months of this chemotherapy. It was very tough! I didn’t experience any more hair loss, though, so I tried to focus on the positive things. I didn’t see much of Houston in those first few months, as I was either in the hospital or at home getting sick from some kind of infection or virus. I tried to keep it together, telling myself this would get rid of the cancer.

I was heartbreakingly homesick, but my younger siblings eventually came to Houston for the summer. We ended up keeping them with us, and my mother found an elementary school here for them. They were overjoyed to stay close to me and to experience school in the U.S. I was scared for their worlds to change, but they were so strong through it all. I turned 19 this past summer, and my two best friends and some family members came to visit around that time.

Right when school was set to start, Hurricane Harvey devastated Houston. Thankfully flooding didn’t impact our apartment. I remember waking up one day with water around our complex. Houston looked like a river! I ended up becoming very sick with severely low blood counts, but it took 15 hours for the air ambulance to come get me. It was scary during this time – my body was becoming bruised, and blood vessels were bursting along my neck, face, back, arms and feet. I could barely stay awake from how weak I was. I seriously needed blood transfusions, but a doctor found out about me being stranded the next day and transported me to the hospital in his large SUV.

My chemotherapy drugs were lowered over the next few months, but I was still just as sick. Some areas of cancer were responding to the drugs, but my colon and gastrointestinal tract weren’t. We still had another six months of treatment left, though, so I remained positive! I ended up having a few breaks from chemotherapy to have colonoscopies, endoscopies and lots of testing done to see if I could possibly start a trial targeting the mutation in my body creating the cancer.

Today, I’m still not cancer-free, but, I’m so much better than I was before! My colon didn’t respond to the chemotherapy as expected, so we’re trying a different treatment to target the cancer. I have high hopes to soon be cancer-free! I look, and feel, so much healthier now.

It’s sometimes difficult to deal with the remaining cancer in my body, but I have faith in the healing I’m going through. The other areas of cancer have improved drastically, and I know I wouldn’t be in this place if it weren’t for the unbelievable miracle of so many people coming together to bring me to Houston.

We face another year here in Texas, so we still do some fundraising to make sure we can afford it. I never thought I would get to where I am now. We’re so incredibly grateful for our care team at Texas Children’s Hospital. Dr. McClain and his team have made so many groundbreaking discoveries while studying histiocytosis. I know I will one day ring the bell and finish treatment, going on to thrive and rebuild my stamina. I can’t wait to start college, and to return home to all of my friends and family. This wouldn’t be possible without every single person who helped us along the way.