Five-year-old Spencer dies from rare terminal brain cancer

When Spencer started vomiting one day his parents thought it was just ‘a tummy bug’ but it was the first sign that something was seriously wrong.

Spencer for SA Weekend Picture: Supplied

One year ago Laura Loughhead’s five-year-old son Spencer was diagnosed with a rare terminal brain cancer. She is sharing her family’s story to help others.

It was July 3, a Monday, about 8.30am and Spencer just started vomiting. He was a little bit tired on the weekend and didn’t want to go to Auskick. We just thought, okay, some of the kids have been sick, maybe it’s a tummy bug.

I didn’t send Spencer to school. He went from vomiting to just lying on the couch, then it got to the point where he couldn’t stand up and that’s when we took him to the emergency department at Noarlunga Hospital.

Spencer was seen very quickly, but he went downhill. Thankfully, we got there when we did. Spencer was transferred to the Women’s and Children’s Hospital, with lights and sirens, and he was taken straight into the resus room.

They did lots of neurological tests and he was admitted for a CT scan. That’s when we were told they had found a lesion. Spencer was being treated for hydrocephalus (excess cerebrospinal fluid on the brain). He went straight into emergency surgery for an external ventricular drain (EVD). It’s when they drill into the skull and let the pressure out. That was lifesaving surgery.

If Spencer hadn’t had that … I don’t know what would have happened.

Scott Barton and Laura Loughhead with Spencer and Indy. Picture: Naomi Jellicoe

A few days later we had what I call “the meeting”, where we were put into a room with about eight or nine of the medical team.

We were told, “Spencer has this cancer, Diffuse Intrinsic Pontine Glioma (DIPG)”. It is a very, very aggressive, malignant, diffuse tumour, meaning that it grows in between the healthy cells.

They just said, “There’s nothing we can do.

“We can’t do surgery on it because it’s located in the brain stem.”

As soon as I heard brain stem I thought, “Oh, my gosh, like, there’s no hope.” Scott, my partner, asked, “How long have we got?” and they said, “Nine to 12 months.”

I needed to find out everything I could about DIPG and that is when it would have been good to connect with another parent who had lived experience. I now want to give that support to others.

Spencer was in ICU for about a week during which time he was given a ventriculoperitoneal (VP) shunt. They said, “We don’t think he’s going to make it through a week.”

Scott, our daughter Indy, who was seven, and I were preparing to say goodbye.

Indy with her brother Spencer. Picture: Supplied

Spencer couldn’t speak, couldn’t eat. All he could do was move his eyes slightly. We were given a few options: see how the week goes … see if he improves; radiation might give you a couple more months; we can take the shunt out, and then that’s it.

All that happened in the space of one week.

We had to make a decision and we said, “Let’s do radiation.”

Spencer had to be taken by ambulance to the RAH – because there are no facilities at the Women’s and Children’s – and go under (general anaesthetic) every single day to have it.

After the second or third week of radiation, Spencer started to talk and then he slowly started to regain his movement in his left side. His right side was never really able to be used again. He never got to walk, but he regained all of his speech. It showed the radiation had done its job. It shrunk the tumour significantly.

I remember the first time when Spencer started speaking. I was lying next to him and he turned around and said “Mummy”.

We were playing games and trying to get Spencer to use his right arm. He was learning how to draw with his left hand.

But the thing is, with this type of tumour, after radiation, it grows back faster and more aggressively. It came back with a vengeance. It was brutal. So we went home.

We found out about a clinical trial, Levi’s CATCH (based on a type of immunotherapy), in Sydney. Spencer only did the first part.

When we returned to Adelaide he went backwards very quickly and started to lose more movement. We got an MRI and the tumour had spread throughout his brain.

That was when we had those conversations. “We are going to be at home because Spencer wants to be here.” We never told Spencer – he was only five – but he knew he was really sick.

Our oncologist was amazing. Very realistic, but lovely. He said, “You might have weeks, but you just don’t know because kids amaze us.”

Spencer was doing quite well. But after diagnosis we had four and a half months.

On Sunday, November 19 when Spencer stopped breathing, it felt like he had waited for us all to be in the room. We were all there when he passed away very early in the morning.

We just didn’t think it was going to happen that quickly. But with hindsight, two or three days before, Spencer had been really calm. That week he had been very agitated – which now I know is another sign – and would sometimes say, “Don’t look at me.” Two or three days before Spencer died, he was on his big comfy chair and I was lying on his bed. He said, “Mummy, you can look at me now.” It must have been his way of telling us “I’m okay.”

Laura has been a spokesperson for the HAS Foundation, which supports children with life-limiting illnesses in pediatric palliative care, and their families. She’s keen to help other families with a DIPG diagnosis. hasfoundation.org.au