Remembering Huxley and the precious time his family shared with the support of Camp Quality

Huxley was a beautiful little 11-month-old when he was diagnosed with a rare genetic cancer, a malignant rhabdoid tumour. He passed away in July 2024.

Before he was diagnosed, he was “really healthy, happy, very courageous, loved musical instruments and being outside,” says mum Alisha. “He was starting to crawl and learning how to pull himself up on things and walk.”

After contracting COVID-19 during Christmas time in 2023, Alisha took Huxley to the doctors a few weeks later when he was still sick and was told that he just had croup.

“I ended up just taking him to the hospital, and they diagnosed him with pneumonia. He was in hospital for three days and then we were discharged, but he just never got better.”

When they took Huxley back to their local hospital, he had a chest x-ray which showed that he had fluid building up in his lungs. They were immediately transferred to the intensive care unit at Westmead Children’s Hospital.

A few days later, while the doctors were in surgery to insert a chest drain, they found a mass on Huxley’s lung. They rushed out to tell Alisha and her husband Brendan that they would need to do a biopsy of the mass to see what it was.

“I remember saying to my partner, ‘Oh, a mass? What if he has cancer?’ And he said to me, ‘Why would he have cancer?’ And I said, ‘Yeah, that’s so true. Why would he have cancer?’”

“And then that afternoon they told us, they pulled us into a room with 15 doctors and told us that he had cancer.”

Huxley started his first round of broad-spectrum chemotherapy the next day.

“They weren’t sure at that stage what type of cancer it was. They just knew that they had to treat it straight away because it was taking up his whole left lung, and it was pushing his heart over to the right side of his body and his spine because it was just so big.”

A few days into the chemotherapy treatment, the family was told that Huxley had a pulmonary tumour, a type of lung cancer. The doctors assured them that this cancer was treatable and that there was a good prognosis.

“After being on such a low and told that your kid has cancer, we were feeling a bit hopeful.”

This hope was shattered when doctors came to see them the next day to apologise and say that their initial diagnosis was incorrect, and Huxley had a malignant rhabdoid tumour.

“They said, ‘Look, don’t Google it. Don’t do anything because what you’ll read is really hard and the prognosis isn’t great.’ At that point, they said, ‘Look, we need to do some further testing to find out why he has this cancer because it can be from a genetic mutation.’”

Alisha was 27 weeks pregnant with her and her husband Brendan’s second child and they were scared that the baby could also have the genetic mutation.

“It was just an emotional rollercoaster. It just kept going on and on and on. Then to be told not to Google it, that was so hard. As someone who has no idea what any type of tumour is really, you want to know what’s growing in your child and what the risks are.”

The first round of chemotherapy took a toll on Huxley’s little body, and he experienced side effects including skin rashes and mucositis, the painful inflammation of his digestive tract.

“It was hard because he obviously didn’t really understand what was going on which was hard in its own ways for us, but at the same time it was a blessing because he had no idea that he was fighting the worst thing in the whole world.”

Huxley stayed in the intensive care unit during his first round of chemotherapy and needed to receive breathing support. After he finished the treatment round, he was able to move to the children’s ward.

“His tumour was shrinking really well. He was breathing on his own more, starting to get more active.”

The results of the genetic tests came back and made Huxley eligible to start a new trial medication and the family was finally able to take him home.

Soon after arriving home, Alisha and Brendan noticed that Huxley had a lump on his neck and his left arm was limp. They called his doctor and took him back into the hospital for scans, which found that he now had a tumour on his neck which was growing despite the treatment he was receiving. The doctors were struggling to find further treatment options for him and decided to combine his chemotherapy treatment with radiation. He would begin the five weeks of radiation soon after Easter 2024.

Just before the Easter weekend, Alisha went into labour. The morning after she gave birth to her daughter Lainey, she discharged herself from the hospital so that the family could all be together with Huxley on Easter Sunday.

“I was like, ‘Oh my God, I’ve got to get home.’ He was so in love with his sister. He just adored her.”

After Easter, Huxley started radiation treatment. The doctors were hopeful that the radiation and chemotherapy would shrink the tumours as surgery was not an option for the tumour in his neck.

“Every day for five weeks we had to take him to Westmead Hospital. At 6:00 A.M. in the morning, we had to leave our home with a 15-month-old and a newborn and drive half an hour in the car to Westmead where he was then put to sleep under general anesthetic every day. It was hard because he didn’t know why we were not feeding him. He was like, “Why am I not getting my breakfast?” And that was hard.”

When Huxley finished the radiotherapy, Alisha and Brendan noticed that the lump on his neck had started growing again, reaching the size of a tennis ball. The radiation and chemotherapy had not worked. A few weeks later they made the devastating decision not to continue with more treatment and move Huxley into palliative care. He passed away a month later.

While Huxley was in palliative care, a friend of the family signed them up to Camp Quality.

“I actually didn’t really know much about Camp Quality. I had heard about it, but I didn’t think it was something for us. I thought it was more for older kids that had survived cancer or things like that.”

Camp Quality offered the family a retreat to a cottage near their home through our Emergency Respite Program where they were able to spend precious time together.

“We were able to be away from our home, but be in an environment where we felt comfortable, refreshed and had a lot of love. Hux was in too much pain to really do anything, but it was just nice to play on the floor and be off our phones and just have that really nice time all together. We will forever hold the memories we made, and family time spent away close to our hearts forever.”

In his last few weeks, Huxley’s condition worsened. The doctors told Alisha and Brendan that there was a risk that because the tumour in his neck was still growing it could make it difficult for him to breathe.

“You never want to hear that. I didn’t want to watch my kid stop breathing and suffocate. I was so scared.”

Less than 24 hours before he passed away, the family went to Bear Cottage, a children’s hospice in Manly.

“We are really glad that we went there because we had great support. It was nice just to have other people around that we weren’t questioning ourselves thinking, ‘Is this normal? Is this not normal? Should we give him pain medicine? Should we not?’”

After Huxley passed away, Alicia and Brendan found joy again, watching Lainey grow and learn to crawl.

“She kept us going. She’s honestly the light of our life. We overcompensate a lot with her. I think the hardest thing for us is just picturing the years go on that we don’t have him because for some reason it just sort of feels like he’ll be back next year.”

“We didn’t get to bond with Lainey until after Hux had passed away because when she was six weeks old, and Hux was really getting sick, we would leave her at home with my mom. So, everyone else was getting those experiences with her, and I had to stop breastfeeding because I didn’t have time to sit with her, or I couldn’t be with her, and I had to rely on other people to look after her, which was really hard.”

Now that Lainey is older, the family is looking forward to attending more events with Camp Quality.

“I’m excited. It’ll be really good. And even though Hux isn’t here, Lainey’s of the age now, where I think interacting with Camp Quality is almost a way of her being connected to Hux. It’s really good because I think after you have a kid pass away from cancer, everyone’s life sort of goes on, but it’s sort of nice to know that we have you guys still checking up on us and offering us things, which is really nice.”

Alisha and Brendan have enjoyed meeting the other families at Camp Quality events and feeling welcomed into the community.

“The people are just the most selfless, kind, genuine people that are going through also the worst thing that they could go through in their whole life. And even the kids, they’re the nicest, kindest kids, and their whole life has been shifted, yet they’re still so worried about other kids which it’s just beautiful.”

In May 2025, Camp Quality offered the family a stay in the Joan Peterson house at Salamander Bay in Northern NSW. Some time for the family to spend together, remembering Huxley.

“Thank you Camp Quality & The Joan Peterson Foundation for this beautiful time away as a family in Salamander Bay. We spent the days soaking in the peacefulness, making memories with Lainey while remembering our darling Huxley. It’s moments like these that bring comfort to aching hearts and we’re so incredibly grateful.”