Our family’s journey: A mysterious illness, from help to hope

October 26, 2018
Our family's journey | Texas Children's Hospital
Image courtesy of The Periwinkle Foundation

Three years ago, life changed dramatically for my family. Out of the blue, our daughter started developing mysterious symptoms over the course of a few months, which we didn’t piece together at first. She initially had intermittent night sweats and bruising on her lower legs, but the night sweats were infrequent and we attributed the bruising to the usual kid stuff. We didn’t think much of it.

When we visited our pediatrician for her well-child appointment, an enlarged lymph node was discovered and her blood was drawn for further testing. The next thing we knew, our whole world was changing. “We have a major problem,” we heard later over the phone. “Her blood results are highly abnormal.” The lab work was sent to a hematologist for evaluation, and we were asked to come to the doctor’s office immediately for additional testing. Orders for X-rays were already written, and we did an ultrasound that afternoon.

I was stunned. To find out my daughter could have a life-threatening illness, and to go through so much testing in such a short amount of time, was shocking. I didn’t have a lot of time to even process the information. I just wanted to find out what was wrong and how to “fix” it. These initial moments of dismay are understandably every parent’s worst nightmare. The vast amount of uncertainty is simply overwhelming, and the propensity to let your mind jump to the worst possible outcome is hard to avoid. We were determined to follow the doctor’s recommendations, though, to find out exactly what we were dealing with.

The follow-up testing included a computed tomography (CT) scan and bone marrow aspiration – the types of tests we all know are looking for the hallmarks of very serious conditions. I still to this day can’t believe how many blood samples our daughter endured during this time. I felt horrible holding her down to get sample after sample, promising her anything and everything under the sun if she could just help us get another vial. At one point, she was actually fascinated with the various sample tubes and their colors, and the nurses were happy to give them to her as a strange type of souvenir.

Six weeks of testing, including surgery for a lymph node biopsy and hospitalization for dangerously low platelet counts, failed to identify what was going on. Meanwhile, our daughter’s symptoms became more unsettling. She had spots on her back, which we later learned are called petechiae, and her gums would ooze blood. It was troubling. Finally, we were told the test results still couldn’t identify the cause of her symptoms. Something serious was happening, and we needed specialists to evaluate her and intervene. This is when I asked for her to be referred to Texas Children’s Hospital. I had never been before, but I knew the hospital had a very good reputation. I was hopeful they could get to the bottom of this.

Our referral was made, and we were told to expect a call from Texas Children’s Cancer and Hematology Centers when an appointment was available. We literally waited by the phone – it was agonizing. I knew this was the place to go for our daughter’s care, but I had my initial reservations. I always heard unnerving stories about the congestion and bustling nature of the Texas Medical Center. I didn’t know how to navigate the area, and I also dreaded the process of finding parking. I wondered if our daughter would get swallowed up in a vast sea of patients and become just a number in a huge medical system.

One week later, Texas Children’s contacted us with an available appointment for the following week. I was relieved, but also anxious. As you can imagine, I couldn’t sleep the night before our appointment. We got up early the next morning and headed to the hospital. I discovered our destination was on the edge of the Texas Medical Center, making it easier to find than I originally anticipated. After a couple of U-turns, I found the Wallace Tower. We made it to our appointment, on the 14th floor of the building, three hours early. There was no way we were going to be late – this was too important.

Our first time at Texas Children’s Cancer and Hematology Centers was pretty surreal. We were in a room, surrounded by young cancer and blood disorder patients. It was the kind of setting you hear about often but seldom see in person. Was my daughter about to join this group of sick children? We were welcomed at the check-in desk before we sat down to wait for our appointment. None of these people want to be here, I thought to myself. But everyone is probably glad they are.

I was nervous when we were called back for our appointment. Once we completed an initial assessment, we were offered child life services for the blood draw. I wasn’t familiar with child life, but was told they were great at helping children get through difficult procedures. I agreed to have them come, and their visit made all the difference. The fun activities, not to mention their jovial personalities, made the blood draw easy, which I was grateful for.

When we met with our doctor, he told me he was confident they could diagnose and treat our daughter. At that moment, I knew we were in the right place. I was immediately at ease and ready to figure out our next steps. He referred us to immunology, as he suspected our daughter’s condition (manifested in her blood counts) was rooted in a dysfunctional immune system. It seemed like we were on the right track.

We returned home to wait for the next appointment, this time with an immunologist. While waiting, our daughter continued to present the same troubling symptoms. I anxiously counted down the days. When the day finally arrived, we repeated the arrival process for the appointment. At this point, over six months had passed since her symptoms started. We wondered if this was going to be the visit we’d learn something was terribly wrong.

New tests were ordered, including specialty tests. Finally, with the results in hand, we were summoned for a family conference. My heart was in my throat, as I couldn’t imagine a family conference being a good thing. I knew this was it – the confirmation of what crowded my mind at my lowest points. I just wanted to know. We were told our daughter has Evans syndrome, a rare autoimmune disorder in which the immune system destroys multiple cell types in the blood. Like most people who aren’t hematologists, I had never heard of it. But we finally had a name, a diagnosis.

Naturally, we had an endless list of questions to ask. We wanted to know what treatment entailed, the expected outcome, what kind of life our daughter would have. It’s human nature to want the answer for every unknown, but many of our questions will unfortunately remain a mystery because the disease is so rare and varies from patient to patient. In the end, the doctors decided to treat her through the Hematology Center’s pediatric immune hematology clinic.

It felt like progress, but I wondered about the therapy our daughter would receive. One of my questions was answered, though – she was definitely joining the other patients on the 14th floor of Wallace Tower.

Our daughter was placed on an immunotherapy treatment plan composed of both intravenous (IV) infusions and at-home injectable medications. I knew we could handle the infusions, but the injections concerned me. I had never administered an injection before, and I wasn’t sure of the best way to minimize pain while maintaining my own composure during the process. The first few tries were a bit dramatic for my wife and I – she was afraid and I was hesitant, which made for a bad combination.

We eventually figured it out with some help from our child life friends. They showed me a device called the “buzzy,” which used vibration to numb the area before giving the injection. We ordered one right away, and it worked like magic. Over the next 18 months, parts of our daughter’s disease started to fade and eventually quieted down to the point of us weaning off the home injections. We were both relieved, and still hope this is something that remains a distant memory.

When our daughter started receiving infusions, visiting the large infusion area on the 14th floor of Wallace Tower was a new experience for us. During our next clinic visit, child life saved the day (once again) by helping place our daughter’s IV. We were escorted to the infusion area, which is adjacent to the outpatient clinic and completely dedicated to delivering infusion therapies. This wide-open space with big windows and comfortable surroundings makes life easier during the countless hours you’ll spend there amongst other patient families. The kind staff even showed us the kitchenette, which offers complimentary snacks and drinks, during our first visit.

Our daughter was hooked up to her medication and we started our day. I had high hopes for this medication to bring her symptoms under control. We learned infusion medications take a long time to deliver, so we spent a large part of our day in the infusion area. During this time, and through many other visits, we discovered some of the wonderful organizations that work with Texas Children’s to make treatment easier on the patients, including The Periwinkle Foundation.

For many years, The Periwinkle Foundation has collaborated with the Arts in Medicine Program at Texas Children’s Cancer and Hematology Centers to provide fun opportunities for self-expression, empowerment and development of coping skills to patients and their families. Our daughter, who loves to paint, color, glitter and create, embraced this program wholeheartedly. We also learned of Purple Songs Can Fly, which allows children to create and record their own song, further empowering them in their healing process.

In September, our daughter participated in The Periwinkle Foundation’s Making a Mark exhibit at the hospital. This public event, which was part of the hospital’s “Going Gold” pediatric cancer awareness campaign, showcased various art and creative writing pieces from children touched by cancer and blood disorders. The pieces were debuted during a spectacular opening reception that included all kinds of fun activities, including a dress-up photo booth, face painting, crafts and all the cookies and ice cream you can eat.

This year, a second grade teacher from Trinity Episcopal School in Galveston was in attendance for her first time. She knew of the program and was curious to see what the children created. This is the point where inspiration took over, I’m sure. The teacher decided to involve her classroom in the “Going Gold” campaign in support of our daughter. Her students were excited to learn about other kids, just like them, who were facing serious illnesses. They wrote letters of encouragement to their new friends, offered prayers at their weekly chapel service and sparked a grassroots fundraising campaign in support of The Periwinkle Foundation’s Camp YOLO for teenage patients at Texas Children’s.

By the end of September, the class raised enough money to send four kids to Camp YOLO. I was amazed upon hearing this. This art show inspired a teacher, who in turn inspired her entire class to give four children (who may have never had the opportunity) the chance to attend an awesome camp next year. There are so many kind people out there with big hearts, and these opportunities arise when you least expect them.

Over the course of several rounds of immunotherapy, our daughter’s symptoms slowly began to fade and the disease itself relinquished some control. Today, she’s in a program for maintenance therapy. What was initially overwhelming is now routine for us, strangely enough. Our trips to Texas Children’s include greetings from familiar faces – it’s just like visiting family. While we’ve faced some bumps along the road, including an unexpected surgery this past summer, our daughter is doing amazingly well and responding favorably to her therapy.

In the end, we have learned and seen so many things we never expected to face when we started this journey. We’ve met truly compassionate people who are dedicated to caring for sick children, and we will always be grateful for the excellent patient care provided by Texas Children’s Cancer and Hematology Centers. I never thought I would walk in the shoes of a parent of a child with a chronic medical condition, but I wanted to share our story to help other families. If you’re facing similar circumstances, know you’re not alone. Help is out there, and life goes on.

If you’re interested in learning more about Texas Children’s Cancer and Hematology Centers, click here.

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Anonymous, father of patient