Our World Fell Apart When We Learned Our Beautiful Daughter With Down Syndrome Had Leukemia

When Mindy and Rick’s daughter was born with Down syndrome, they knew there would be issues with her health – but they’d hoped a battle with cancer wouldn’t be one of them.


It was a hot July evening, and I’d been having contractions on and off for a week. Our fourth child, a baby girl, was due and we couldn’t wait to meet her. We’d had a false alarm the previous week, so we were hoping this time was the real thing.

It turned out the good news was our baby was already on her way out. The bad news was that she was upside down. I was rushed into surgery for an emergency C-section.

I couldn’t wait to see our sweet girl. I hadn’t had a C-section before, so I didn’t know what to expect. I asked that they lift her for me and then let me hold her for skin-to-skin contact. But after she arrived, the nurses took her right away to weigh her and clean her up. The doctor didn’t lift her and I didn’t get to hold her.

“Well, what does she look like?” I kept asking my husband, Rick. “She doesn’t look like our other kids,” he replied. We later learned our newborn girl had an extra chromosome. In other words, Down syndrome. I knew what it was, but nothing about what it was like to be the parent of a child who had it. We Googled to find the answers we desperately needed. One of the first facts we learned was that children with Down syndrome are more likely to get leukemia.

My heart broke when my husband read those words. I got a sickening feeling that this would be one of the hardships we’d have to face. But, other than a few days in the NICU and coming home on oxygen, Tessa was considered very healthy. She grew stronger every day, reaching her milestones. We were grateful, and I tried to put the possibility of leukemia out of my mind.

The nurse who took her blood told us she’d had a brother with Down syndrome. “Had?” I thought.

It’s recommended children with Down syndrome have yearly blood tests because of the chance of thyroid issues and leukemia. So, after Tessa’s first birthday, we took her to our local hospital. The nurse who took her blood told us she’d had a brother with Down syndrome. “Had?” I thought. She explained he’d died from leukemia and my heart sank. She’d lost her brother to the same thing we were there to check Tessa for.

Waiting for the results was agonizing. I was convinced our greatest fears would be realized. When the nurse called the next day, she said two of the three tests they did had come back normal. Tessa’s white blood cell count, though, was abnormally low. There could be various reasons for this, so they’d check the next month again.

Back we went with our barely one-year-old daughter. Because Tessa’s veins are so small, it took more than an hour for them to draw a blood sample. Rick and I were in tears as we left the hospital and, again, we waited anxiously for the results. I spent most of the day in tears. I could barely function, knowing we could get news that would change our lives.

Tessa’s cell count had risen – but it was still below what was considered ‘normal’.

The next day, the nurse called to say Tessa’s white blood cell count had risen. What did that mean? I didn’t know. I think they would have left it at that, but I researched what constituted a ‘normal’ count. I felt uncomfortable and pressed for another test. Yes, Tessa’s cell count had risen – but it was still below what was considered ‘normal’. Her doctor agreed we could check again in a few months, in January.

After Christmas, Tessa became very sick. She had a string of ear infections that antibiotics couldn’t get rid of. She’d seem to improve, and then be worse the next day. We spent countless nights awake with her on the floor – she was too uncomfortable to sleep in her crib or in bed.

She was too sick for more tests in January – she had to be well to get accurate results. Then, along with her fevers, Tessa became lethargic. She was in a lot of pain. Her skin turned pale.

We couldn’t wait any longer. We took her to the pediatrician on Valentine’s Day and explained what was happening. The doctor suggested we take Tessa to the hospital for another set of tests so off we went, the third time in four months. Afterward, we went shopping – trying to take our minds off what might be happening.

He said the words I’d dreaded since Tessa was born: “We got the results from the lab draw and it’s looking like she has leukemia.”

Every other time, the nurse called after a day or two with the results. But a few hours later, while we were still shopping, Rick handed me the phone. It was the pediatrician. My heart stopped. Why was he calling and not the nurse? Why was he calling so soon?

Then, my world fell apart. He said the words I’d dreaded hearing since Tessa was born: “We got the results from the lab draw and it’s looking like she has leukemia.” I didn’t even have the strength to stand – I literally fell to my knees, sobbing on the phone in the middle of the store. My heart felt so broken I thought it might stop beating there and then. The life and dreams I’d had for my baby girl disappeared. I had no idea how we could move forward.

We called our family and friends in tears as we drove to the hospital. And there we began the fight of our lives. It was confirmed Tessa had pre-B-cell acute lymphocytic leukemia. We were given so much information  the first week, it was overwhelming to process. Our minds were filled with doubts, fears, and insecurities. It was the hardest trial of faith we’ve ever had to overcome.

We had to pray our hearts’ desire, which was for our sweet girl to win this fight.

My husband has always been my rock. When Tessa was born, I said I didn’t know if I could handle having a child with special needs. He grabbed my hand. “Yes, you can,” he said. “And we will.” But now, after learning of Tessa’s leukemia, his doubts overshadowed his faith. He struggled with knowing what to pray for. It took us a while to understand this was an opportunity to prove our faith. We had to pray our hearts’ desire, which was for our sweet girl to win this fight. There was no choice but to carry on with a determined spirit – Tessa would beat this.

We learned Tessa would need chemotherapy for the next two years and four months. That would cure the cancer and give her the best odds against a relapse. It was one of the more common types of leukemia, so the doctors were confident about treating her. Mostly she would be an outpatient – we were grateful for this, as we had our three other children to care for.

How would I be able to take care of her with our other three children to look after too? I felt overwhelmed.

The first week of Tessa’s treatment was spent in hospital, while everything got underway. There were many tears for us all. Tessa underwent needle pokes, transfusions and sleepless nights. By the end of the week, she was doing much better and we were allowed home. I was nervous. In hospital, Tessa had doctors and nurses watching her very closely. They had knowledge and experience and knew what to look for. I didn’t. How would I be able to take care of her with our other three children to look after too? I felt overwhelmed.

That first month was the hardest of my life. We went home with two bags full of medication we knew nothing about, and one very sick child. My sister-in-law is a pediatric oncology nurse, so she talked me through every different medication and what it was for. We dreaded medicine time – Tessa needed multiple syringes several times a day. I will never forget how traumatic it was. We’d try sneaking the meds into her bottle or food, but she could always tell and would refuse them. But she had to take them – they were crucial to her treatment.

We had no choice but to force the medicine down her throat. I’d hold her down while Rick opened her mouth and put the syringes in, so she was forced to swallow. It hurt us so badly to put our 18-month-old baby through such an ordeal. She had no idea why we were doing this to her and we couldn’t explain it. By the end of each session, we were all in tears and defeated. This went on for three weeks. The chemo was also taking its toll on our darling girl.

Tessa had typhlitis – a hole in her large intestine. The prognosis wasn’t good.

One day, Tessa seemed especially weak and tired, so I took her to the hospital. They admitted us so they could keep a close eye on her. Before I put her to bed, she started shaking and crying. I called the nurse, who called a doctor. So many things happened so fast – I knew it was serious. The doctor ordered an emergency x-ray in Tessa’s room. They had to hold her there for several minutes as she was screaming in pain.

I called Rick to let him know something was wrong and he set off straight away. Tessa had typhlitis – a hole in her large intestine that was causing a blood infection. The prognosis wasn’t good and Tessa needed immediate emergency exploratory surgery. As the surgeon listed the potential complications and hazards, all I could do was cry. I was terrified this would be it and prayed harder than I have ever done in my life.

Rick made it to the hospital before Tessa went in for surgery, so we waited and cried and prayed together. We were told the operation could take four hours, but 90 minutes later we got the news. There was one small hole, and they’d been able to repair it. Tessa’s intestines looked otherwise healthy. There were no complications. More miracles.

It was devastating to see Tessa after surgery. We were so grateful she was ok, but she had an incision the length of half her body, stapled to hold it together. It illustrated just how serious her condition was. We spent a night in the ICU before they sent us back upstairs to the cancer unit. Tessa couldn’t eat for ten days because her bowels had just undergone major surgery. It broke my heart to see her ask for food and not be able to provide her with one of life’s most necessities.

Rick and I got used to hospital life, juggling caring for our other children and time with Tessa.

Day by day, Tessa’s health improved. Once she was allowed to eat again, she recovered amazingly well. The doctors and nurses were astounded at her progress. Rick and I got used to hospital life, juggling caring for our other children and time with Tessa. She stole everyone’s hearts with her sweet smiles, waves and cute fist-bumps. Finally, she was well enough to come home and back to family life.

Since then, Tessa has had nine months of treatment. There have been other complications and she’s been through so much. But we’ve made it through the most intense phases and we’re in long-term maintenance.

When I think about everything Tessa has overcome, I am amazed by her strength. Even when she’s nauseated from chemo and doesn’t feel well, she continues to share her joy with us in so many ways. The last ten months have been the hardest of my life, but we’ve witnessed miracles. We’ve been rescued by our friends and neighbors. We’ve truly learned not to take life for granted.

Cancer is a thief. It causes heartache, pain, and unimaginable tragedy. But through cancer, I’ve had the opportunity to see so much beauty. A selfless act by a stranger. Life’s most simple things. And God’s all-knowing hand as He directs the details that orchestrate miracles. My prayers have never been so sincere, and God has provided tender mercies to our family daily.

I will never say I am thankful for cancer, but I am thankful for the opportunities it has given me to grow and learn.

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