‘My heart stopped. She has leukemia’: Mom faces daughter with Down syndrome’s devastating diagnosis

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“The excitement was overwhelming as we awaited the arrival of our fourth child, a little girl. I felt there was something different about this baby during pregnancy, but couldn’t quite figure out what it was. She was born via emergency C-section, but the biggest surprise came when we found out she had Down syndrome. I was in shock. I felt so many emotions at the same time; I was actually numb. The life and dreams I imagined for this baby for nine months seemed to be taken from me in an instant. So many thoughts and questions entered my mind. Would I be able to take care of a child with special needs? How was this going to affect our other three children? What kind of potential health issues might she face?

Courtesy Mindy Guymon

I knew what Down syndrome was, but nothing about what it was like to be a parent to a child with Down syndrome. My husband and I went to google to find the answers we desperately sought. One of the first facts we learned was that children with Down syndrome are more likely to get leukemia. When my husband read those words to me, my heart sank, and I had a sickening feeling this would be one of the hardships we’d be facing someday. Other than a few days in the NICU and coming home on oxygen, Tessa was otherwise considered very healthy. We were so grateful for her good health, and I tried to put the thought of leukemia to the back of my mind.

Courtesy Mindy Guymon

Because of the increased chance of leukemia and other potential health concerns, children with Down syndrome are encouraged to get blood draws every year. A few days after Tessa’s first birthday, we took her to the hospital to check her blood for anything abnormal. The nurse who drew Tessa’s blood that day told us she had a brother with Down syndrome who had passed away from leukemia and my heart sank again. My fears all returned, and I couldn’t get the thought of leukemia out of my mind. When we received the results of her blood tests, they told us her white blood counts were low, but that they would check again in a month to see if there was any change.

A month later we got her blood drawn again and this time her levels had gone up. When the nurse called to tell me the results, I remember not feeling at peace with that information. Her levels had gone up, but they were still not in the normal range, so I asked if we could do one more test in another couple of months to make sure nothing was wrong. When Tessa was 18 months old, she got very sick. She got a virus that turned into an ear infection. It took days before she got better, only for her to begin fevering again. Over the next few weeks Tessa’s health declined. She stopped crawling, eating, and was not her happy, cheerful self. Her face turned very pale, but I thought it was in my head, until Tessa’s physical therapists expressed their concern about it. I sobbed when they voiced their worry because it confirmed the feelings I had at her birth.

Courtesy Mindy Guymon

The next day we were in the hospital to get more labs done because we felt the inevitable truth seeping into our lives.  After we got her blood drawn, we went shopping. It was Valentine’s Day and we wanted to try to enjoy the day as much as we could before we got the results. Every time before, they called at least a day or two later to give us the results. So, we figured we would try to forget the heaviness on our minds until tomorrow. A few hours later as we were still shopping my husband handed me the phone and said it was the pediatrician. My heart stopped. Why was he calling so soon? Why was HE calling and not the nurse this time? Then, my whole world fell apart. He said the words I had been fearing since Tessa’s birth, ‘We got the results from the lab draw, and it’s looking like she has leukemia.’  I didn’t have the strength to stand and I fell to my knees. I sobbed on the phone while the pediatrician cried on the other end of the line. I thought my heart might stop beating right then and there because of how broken it was. I felt the life and dreams I had imagined for my baby girl disappear once again and had no idea how I could move forward.

Courtesy Mindy Guymon

We called our family and friends in tears as we drove to the hospital where we began the fight of our lives. After more tests, it was confirmed Tessa had Pre-B-Cell Acute lymphocytic leukemia. That first week we were given so much information. It was very overwhelming to process that, along with all of our emotions. So many doubts, fears, and insecurities filled our minds. This was the hardest trial of faith we ever had to overcome. My husband Rick has always been my rock. When we had Tessa and I told him I didn’t think I could handle having a child with special needs, he grabbed my hand and said ‘Yes you can. And we will!’ But after learning of Tessa’s cancer, his doubts overshadowed his faith and he struggled with knowing what to pray for. After a lot of thought and prayer, we came to understand this was an opportunity for us to prove our faith, and that we should pray for the desires of our hearts; which was for our sweet girl to win this fight. Ultimately, we decided there was no other choice but to move forward with the determined spirit that Tessa was going to beat this.

We learned Tessa would need to go through chemotherapy treatment for the next two years and four months to cure the cancer and provide the best odds of no relapses. The type of cancer she has is one of the more common types and the doctors feel very confident in knowing how to cure her. We learned she would be out-patient for most of her treatment phases, which we were very grateful for considering we have three other little ones at home. We spent the first week of Tessa’s treatment in the hospital, so she could get her port placed and begin chemotherapy. There were many tears shed the first few days of her treatment by both us and Tessa. She had many needle pokes, transfusions, and sleepless nights. Finally, by the end of the week, she was doing much better and they sent us home. I was very nervous to go home. That whole first week we had nurses and doctors watching Tessa very closely. They had a large amount of knowledge and experience of cancer, but I didn’t. I didn’t know how I was going to take care of her and my other three children at home and felt very overwhelmed.

The first month of Tessa’s treatment was very intense. We had seven different medications we had to give our 18-month-old baby every day; and some twice a day. If you’ve ever tried to give an infant medicine when they don’t want it, you can understand how traumatic it was for everyone. We dreaded giving her the meds but didn’t have a choice. These medications were going to save her life. The side effects from the medicine were the hardest part and took the greatest toll on sweet Tessa. She wasn’t herself once again and spent many days in our arms. It was heartbreaking to see our normally happy and cheerful baby so lethargic and sick.

One day Tessa was acting particularly weak and tired, so I took her to the hospital. They decided to admit us for the night to keep a close watch on her. Before I put her to bed that night, she started shaking and crying. I called the nurse into the room and she called the Doctor in. So many things happened so fast and I could tell immediately this was serious. The doctor ordered an emergency x-ray to her room and they had to hold her there for several minutes as she was screaming in pain. I was alone, so I called Rick to let him know something was wrong. I could barely get the words out through my sobs, but he immediately left our home and took the 45-minute drive to the hospital. After looking at the x-ray they knew Tessa had Typhlitis. This meant she had a hole in her intestine that caused an infection in her blood and the prognosis was not good. They told me they would have to perform an emergency exploratory surgery on Tessa immediately. As the surgeon was listing the potential hazards of this surgery all I could do was cry. I was so scared that this was going to be it. I prayed harder than I’ve ever prayed at that moment.

Courtesy Mindy Guymon

Through a series of small miracles, my husband was able to make it to the hospital before they took Tessa down for surgery. While we waited, we cried and prayed together. They told us this surgery could take 4 hours, but an hour and a half later they came to deliver the news. They found one small hole and were able to repair it. The rest of her intestines looked healthy. No other complications. More miracles.

Courtesy Mindy Guymon

Seeing Tessa after surgery was devastating. We were extremely grateful she was okay but seeing our child with an incision the length of half her body and staples to keep it together illustrated just how serious her condition was. We spent one night in the ICU before they sent us back upstairs to the cancer unit. Because Tessa’s bowels had just undergone a major surgery she couldn’t eat for ten days. It was heart wrenching to watch her ask for food but not be able to provide one of the most basic necessities of life to her. Tessa’s health improved day by day and we became accustomed to hospital life. Rick and I switched off, so we could also spend time with our other children and made time for visits at the hospital. After ten days of no eating, Tessa was allowed to begin eating certain foods slowly. Once she was able to eat again she improved amazingly. The doctors and nurses were astounded at how well she was doing. She stole the hearts of everyone who came into the room with her sweet smiles, waves, and the cutest fist bumps you’ve ever seen. Eventually Tessa was well enough for us to return home again and we were so thankful to have our family life back.

Courtesy Mindy Guymon

Since we’ve come home from that hospital stay, things have been much better for Tessa. We’ve had our ups and downs, but she’s thriving more now than she has in months. She is now on the third phase of treatment and we only have to go to the hospital every ten days. We have tried to make the best of our current circumstances by spending as much time together as a family as possible.

Courtesy Mindy Guymon

Tessa’s cancer has definitely taken a toll on our other children, but we are trying hard to balance keeping their lives as normal as possible, while still providing Tessa with what she needs. We spend a lot of time at home playing games, watching movies, and creating fun memories to ease the burden of our circumstances. We have found a new appreciation for the joy provided in the simple things of life. Worrying about trivial things is such an easy thing to do, but we have learned the only thing that matters to our family is that we are together.

Courtesy Mindy Guymon

We are still in the beginning of Tessa’s journey, but she is fighting so hard. We still have two years of treatment and it’s daunting to think about cancer stealing these years from our lives, but we are not going to let it take our girl. Cancer is a thief. It is heartache, pain, and unimaginable tragedy. But, through cancer we have been given the opportunity to see so much beauty. Beauty in the selfless act from a stranger. Beauty in finding joy through the simple things in life. And beauty in unexplainable miracles that have saved her life already. Every day, we are amazed at the strength and determination Tessa has. Even though she has gone through excruciating physical pain, she’s always the first to provide comfort to her siblings when they are sad or hurt. She has gone through multiple surgeries and been poked and prodded many times, yet she continues to spread light and sunshine wherever she goes. She is a warrior through and through and we feel so blessed to call her our own.

Courtesy Mindy Guymon

We hope that as others hear Tessa’s story they will believe that miracles happen. Her life is proof of that to our family. We hope they can see the light and love she shares even though she’s been through so much and have hope and determination to face their own challenges like Tessa does. Life can be very difficult at times, but there is so much beauty to be found if we only look for it.”

Courtesy Mindy Guymon

This story was submitted to Love What Matters by Mindy Guymon, 32, of Utah. You can follow Tessa’s journey hereSubmit your own story here, and subscribe to our best stories in our free newsletter here.

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