Bennett Cleugh

At just four months old, Bennett Cleugh was experiencing symptoms of the common cold when he suddenly stopped eating. His family knew something was wrong, and a visit to the emergency room led to Bennett being diagnosed with high-risk acute lymphoblastic leukemia (ALL). He began treatment with chemotherapy followed by blinatumomab, an immunotherapy. The treatments weren’t working, and his doctors recommended he enroll in a CAR T-cell clinical trial for CD22. While Bennett initially responded well to CAR-T, his leukemia worked its way around the treatment and started rapidly progressing.

Bennett passed away in March 2024 at ten months old. His family believes that Bennett could potentially still be here today if he had access to CAR T-cell therapy earlier in his journey.

In her own words, Bennett’s mom, Ashley Wager-Cleugh, shares the story of her son’s brave fight.

 

When Bennett was four months old, he started showing some cold symptoms and started to vomit. His older sister Madeline had a back-to-school cold, and I thought Bennett must have caught it from her. I called the nurse’s line who agreed that it was likely just the common cold. Over the next few days, Bennett stopped eating, and I knew it was time to take him to the emergency room.

Everyone there assured me that he was probably fine, but they would do blood work to be sure. His blood work revealed a white blood cell count so high that the doctors didn’t even believe it. They did additional blood work which gave the same scary results. Bennett’s white blood cell count was over 400,000.

Within hours of entering the hospital, our entire world came crashing down. We went in expecting to be told he had a virus and were instead told our son had cancer. The diagnosis came just five days after he started showing symptoms. We were flown to BC Children’s Hospital in Vancouver in a helicopter that night and Bennett was placed in the PICU.

That next day Bennett underwent surgery and multiple procedures, including having his port put in for chemotherapy treatments. Bennett was officially diagnosed with high-risk acute lymphoblastic leukemia (ALL). It was September 2023, and we were told we would be at the hospital for the next six to nine months.

Bennett’s treatment began with an intense round of induction chemotherapy. We were told he would probably end up in the ICU because of infections, but Bennett did really well with the treatment. However, at the end of induction he still had 4% leukemic cells in his bone marrow.

After chemotherapy we moved on to our first immunotherapy, blinatumomab, which works on a 28-day cycle. Bennett’s leukemia started with a CD19 marker which is what blinatumomab directly targets. At the end of the cycle, the cancer had worked its way around the blinatumomab to CD22. The therapy brought Bennett’s leukemic cells down to 0.4% but was no longer attacking the correct cells.

At this point, we were given the opportunity to try CAR T-cell therapy. There was a clinical trial out of Seattle for CD22 and we agreed to enroll Bennett. Because the CAR-T process takes time, he received two additional rounds of chemotherapy to keep his white blood cell count down. In January 2024, Bennett received his T-cells. He was one of the first patients to be able to do CAR-T therapy at BC Children’s Hospital.

Two weeks after his injection, a bone marrow biopsy revealed that Bennett’s T-cells were gone. We were told he was cancer free and that the next step would be a bone marrow transplant. An additional biopsy about two weeks after the first biopsy showed completely different results. We went from hearing “no cancer detected” to learning that the leukemia had worked its way around the treatment and morphed into a more aggressive leukemia known as AML. We had seen the light at the end of the tunnel but were now back in complete darkness.

Bennett began an intense round of induction chemotherapy for AML. The chemotherapy was intense, and Bennett experienced a lot of side effects including nausea and a bad fever. Over two weeks he had 14 transfusions. I feared that his cancer was taking over, but his doctors reassured me that it was all normal reactions from the high dose chemotherapy.

During this time, my partner and I had discussions with doctors that no parents should ever have. We were living day by day, minute by minute, waiting for his white blood cell count/neutrophils to return.

By mid-March, Bennett’s cancer started rapidly progressing. The doctors told us there was nothing more that could be done. We moved over to Canucks Place (pediatric hospice care) to spend more time together as a family and prioritize Bennett’s comfort. Canucks Place felt like home without the beeping from machines, blood pressure readings and medicine pump towers. We were able to take Bennett on walks, visit the garden and even attend a hockey game.

Our time at Canucks Place were some of the hardest days of our lives. We didn’t know if we had days or weeks left with Bennett. The day after we arrived, the team immediately started on memory making. We received castings of Bennett’s hands and feet, a heartbeat Teddy bear for Madeline and a lock of his hair. No parent should ever have to prepare for their child’s death.

On March 27, 2024, we lost Bennett. I am so proud of how hard he fought and know in my heart he is finally at peace.

Bennett radiated joy. His nurses and doctors loved him so much and even nicknamed him “Mr. Smiley.” Bennett was only ten months old but could wrap his arms around me and squeeze me in a loving hug and open his mouth to give me kisses. He loved spending time with his big sister and enjoyed watching the television series Gabby’s Dollhouse.

I truly believe that if we were able to have access to CAR T-cell therapy earlier in our journey Bennett could potentially still be with us today. If CAR-T had been the first choice for Bennett, it would have also prevented him from going through five rounds of intense treatments.

We will always be grateful that CAR T-cell therapy gave us time to be a family together. Unlike his other treatments, Bennett experienced no harsh side effects from CAR-T and was truly happy. My hope is that one day all patients who can benefit from CAR-T and other advanced therapies will receive access to these treatments earlier in their journeys as a first choice.

We receive messages from patients and families around the world with experiences similar to Bennett’s family. We do whatever we can to be a resource for these families to help them get enrolled in a clinical trial or find a treatment center where they can access CAR T-cell therapy or other advanced therapies.

 To search for available CAR-T or other immunotherapy clinical trials, visit our Clinical Trial Finder. To help us in our mission to give patients around the world the opportunity to Activate the Cure, Get Involved or Donate now.