'I Noticed Changes in My Son's Eye, Then We Made a Heartbreaking Discovery'

When my son Ted was born, I was over the moon. My husband and I were already parents to two older boys and decided we wanted to have one last child together to complete our family. We had only been trying for a few months when I found out I was pregnant in March 2020.

The news came during the first week of the United Kingdom's COVID-19 lockdown and it felt like a small bit of light in a very dark time. As we watched the pandemic unfold, Ted arriving was something exciting we could all look forward to.

I had morning sickness during the first few months, but after that everything was fine. I was very aware that this was going to be my last pregnancy, so I wanted to enjoy everything, soak it all up as much as I possibly could.

When Ted was born he had an infection, which meant he spent his first week in hospital having antibiotics, lumbar punctures and other treatments. Because of the pandemic, my husband was only allowed in for an hour and a half a day. It was so emotional and scary being there on my own, not knowing what was happening.

Happy early months

We spent a week in the hospital, but after coming home, Ted was completely healthy. He was the happiest baby I had ever known; just so content. He slept through the night from just a few weeks old, which was the dream. It felt like he was the easiest baby in the world. I just enjoyed every second.

The U.K. was in and out of lockdown for the first five months of his life, so we spent so much time together as a family. My sons were being homeschooled and my husband was working remotely; the five of us being together was perfect.

My boys adored Ted, he was definitely the favorite within the family. He was so funny, such a little character, you couldn't help but love him.

Noticing small changes in Ted's eye

On August 5, 2021, when Ted was eight months old, we went on a family holiday to Wales. On the first day, I noticed something slightly off about his eye. It didn't look swollen, irritated or like it was protruding, it just looked different than it did before.

I knew there was something wrong, but I couldn't put my finger on what it was. I thought it could be a hemangioma, a birthmark common among newborn babies, located behind his eye.

I spoke to my husband, who had also noticed this slight difference, and we decided to get him checked out at the hospital. I had looked up Ted's symptoms online and everything pointed to them being signs of a tumor, but I genuinely didn't think it would be.

A week later, I took Ted to the Accident and Emergency service at Nottingham's Queen's Medical Centre. I thought the doctors would say: "There's nothing wrong with your baby, go home." But they didn't. His first response was: "Wow." Which isn't really what you want to hear. He told me they would have to take Ted for some tests.

Doctors running tests

At this point, I felt quite calm. I think because I was on my own with Ted, not having that emotional crutch of my husband, I knew I had to be strong and just do it myself. I didn't break down until I left the hospital, where my husband was waiting outside.

We spent seven hours at the hospital as doctors ran tests; the staff were incredible. They did several examinations and sent Ted to the eye casualty, where his doctor was fantastic and willing to try everything he could to figure out what was causing Ted's symptoms.

By the time we left, I was told that it was likely Ted either had an aneurysm or a tumor. At the time, I didn't really process that my son could have cancer, I just hoped it wasn't an aneurysm, which I saw as a ticking time bomb.

A couple of days later, we returned to the hospital for an MRI scan. The following day, we found out Ted had a tumor behind his eye. While it was a relief that he didn't have an aneurysm, I still don't think we even started to process the possibility that he had cancer, we were hoping the mass was benign.

The next day, we met the oncologist, who told us there was a very high chance that Ted's tumor was cancerous and that he would need to have a biopsy to confirm whether or not it was.

That was the moment it sunk in, we understood that Ted may be really sick. When you look around the oncology ward and are surrounded by children with cancer, you realize the likelihood is that your baby is one of them. That hit us like a sledgehammer.

Ted's cancer diagnosis

Ted's MRI and biopsy revealed he had a cancerous tumor inside his sinus, which was growing so fast that it was pushing his eye forward. We later discovered his cancer was an extremely rare and very aggressive form called mesenchymal chondrosarcoma.

After hearing the news, I knew I would have to stay strong, I had to do everything I could to care for my children and couldn't break down emotionally. The first thing I did after the diagnosis was pick up my older sons and take them to their grandparent's house, where they stayed for the first couple of weeks we were in hospital with Ted. It was like I was running on autopilot.

Ted's tumor was too big and dangerous to operate on, so doctors wanted to start him on chemotherapy straight away. They wanted to shrink the mass in the hope they could try to surgically remove it in the future.

Ted's treatment begins

Initially, Ted responded really well to treatment and his tumor started shrinking immediately. Very quickly after his first round of chemo, going in and out of hospital became the new normal for my family. At some points, we were going back and forth almost daily.

Ted's immune system was very compromised, so he would catch infections regularly in between his cancer treatments. In September 2021, he ended up with sepsis and was very sick for about a week. Even then, he pulled through with a big smile on his face and seemed to be doing really well.

He had six rounds of chemotherapy up until December 2021, when Great Ormond Street Hospital in London agreed to try to operate to remove his tumor.

Throughout this entire process, Ted's diagnosis and all of his treatments, My thought process was still: "I have to stay strong." I was running on adrenaline, knowing I couldn't break down.

Doctors operate to remove Ted's tumor

During his eleven hour operation, doctors removed a large part of Ted's eye socket and a section of his forehead. He was in intensive care for a couple of days, but even then, he came out of the surgery stronger. Within ten days we were home again; he was laughing and smiling. We really began to feel positive, like things might be okay.

Doctors thought they had removed the entire tumor. There was a very small mass on his skull base, but they didn't know whether it was active cancer or scar tissue. Ted carried on chemotherapy to stop his cancer returning and had another five cycles in Nottingham.

In February 2022, we found a lump on Ted's forehead. Doctors did a scan, but couldn't see anything which indicated cancer. At the same time, Ted started another round of chemotherapy, but he got very poorly really quickly.

His reaction was extremely different to his previous cycles, so we had to remain in hospital. The following week, doctors did another scan and discovered the swelling on Ted's forehead was actually caused by pressure pushing his brain forward through the gap in his skull, but they still didn't know why at that point.

Devestating news

It was only a week later, during another scan, that doctors noticed another mass. They initially thought it was a small part of the cancer regrowing or infection. But seven days later, on March 25, 2022, we found out the cancer had spread across Ted's whole brain and his spinal cord. There was nothing else that could be done to save his life.

That news was the biggest shock, we were not prepared at all. Two weeks before, we had been told the cancer was likely gone. On the ward, there were some seriously sick children, but Ted never seemed as ill as them, he always handled his treatments so well.

We had almost let our defenses down and started to feel hopeful. I thought even if the cancer had spread, there would be something they could do. We were devastated. I think that was one of the first times I cried in front of the doctors. It was just such a shock to everybody.

Doctors gave us the choice of going home, moving to a hospice or staying at the hospital. For us, that ward had become like our second home; the staff felt like family, they all loved Ted and it just felt like the right place to be.

Soon afterwards, Ted had another operation to place a shunt in his head, which would relieve pressure on the brain, plus a port so they could inject palliative chemotherapy directly into his brain and relieve him of symptoms and keep him as comfortable as possible.

He had three rounds of chemo, but it was clear to my husband and I that it was too distressing for Ted. He was going downhill quickly, so after the third cycle, we decided to stop treatment. We were doing it to get more time with Ted, but he was in a lot of discomfort, so that didn't seem fair on him.

He passed away on April 9, 2022, fifteen days after we found out the cancer had spread. Our family was heartbroken. We had gone into the hospital expecting Ted to have a round of chemotherapy, but he never came home again.

Coping with Ted's death

When we came home, everything was just as it was when we left. All of Ted's toys were out, his cot was still in our room. It was too hard to be at home and look at everything, so we went away to Wales and had some time to reflect before we had to start planning the funeral.

A couple of weeks after Ted's death, we decided to start our charity. During Ted's treatment, we had been fundraising to fly him to the Netherlands for a procedure at the Princess Máxima Center for Pediatric Oncology, which was not available on the NHS and had managed to raise £75,000.

We used the money to buy a caravan in Snowdonia, Wales, where we had gone on holiday with Ted when he was eight months old, so we could offer trips, free of charge, to families of seriously ill children, so they can go and make memories.

The holiday home is also available for families like ours, who have lost a child and need the chance to reflect away from home. So far, ten families have been to the caravan over the past few months and we've had great feedback.

For us, the care we received at the hospital, from the very beginning to the end of Ted's life, was one of the most important parts of our whole journey. Although it was an extremely sad eight months, we had very happy memories on that ward; making friends and having good times with the nurses.

Symptoms of cancer in children can be so nondescript, so slight. For any parents, I would say to trust your instincts. Unfortunately, in most cases there aren't obvious indicators; there isn't a specific rash for parents to look out for. So if you're worried, if you think there's something wrong, take your child to be seen by a doctor.

Jessica Neal, 35, from Nottingham, England, founded The Little Ted Foundation in April 2022 to provide help for families with a seriously ill child or bereaved families following the loss of a child. You can visit their website here.

All views expressed in this article are the author's own.

As told to Monica Greep.