Stuff that matters

A toddler was left fighting for his life with cancer for three years after his mum spotted a leg rash.

Max Tobin, at the time just three years old, developed a recurring limp alongside a temperature over a couple of weeks in 2018.

And it was the third time these symptoms happened when Sharon Hilton and her partner found a rash on the toddler’s leg.

They then decided to take little Max to hospital, where he underwent some tests – and was diagnosed with leukaemia.

The mum, 36, said : “He had a temperature off and on for a couple of weeks but he was in nursery so we just assumed it was a bug.

“Over the month before, every time he had a temperature, he had a limp as well. He was a little boy, so he was climbing on things and jumping all over the place so we assumed he’d bumped himself.

“The third time he had the limp though we noticed a little rash on his ankle, nothing major or really scary it was little dots and bruising but we didn’t know what it was at the time.

“We took him to the GP and on the same day they sent us straight to Ormskirk Hospital. We described that he had been a bit more tired recently and a little bit off his food but nothing exceptional.

“From Ormskirk they did some blood tests and kept him in for a few days and then they noticed some of his blood counts were extremely low so they sent him to Alder Hey for a bone marrow biopsy.

“Then a couple days later he was diagnosed with leukaemia. It was all very very quick.”

Sharon, also mum to Jamie, 12, said: “It was a shock really. As a mum, when a child gets symptoms you google it, I’m sure everyone else does that. [Leukaemia] did come up when I googled it but I didn’t think at the time that was it.

“You never think that it’s going to be the worst case scenario. When we got to Ormskirk and they did blood tests, one of the doctors did say that leukaemia was a possibility but again you hope for the best and think he just has an infection or something like that.

“It was only really the day before we left for Alder Hey that it really started to hit home when they came in and said it is very likely that this is what it is.

“Again, there is that tiny little bit of hope that rested in us. When we got the diagnosis from Alder Hey it was life stopping. Me and his dad just froze.

“We had no reaction to begin with because you can’t process that information that quickly. Just a month before he was in and out of the pool, running round, and you wouldn’t know any different at all.

“There was no reaction initially just because we could not process the information. After the first two days we took it in turns to have a breakdown because at the time you don’t know the ins and outs of the illness and you don’t know what’s going to happen, you just think the worst at that point. There are no words to describe that feeling at the time.”

Since Max’s diagnosis, the now six-year-old has had three years of maintenance treatment, which is due to finish next month.

Max has had various types of chemotherapy varying from spinal chemotherapy to chemotherapy administered at home.

Once the maintenance treatment is over, it is then a wait for his immune system to build itself back up again.

Despite the excitement, there is a sense of nervousness as the family go into the unknown with living with the disease without the protection of chemotherapy.

Sharon said: “We have to wait. He has blood tests regularly for his immune system to come back up. There are no specific guidelines for how long that will take as it’s different for every child.

“He’s still got a low immune system, especially, going into winter, he can get infections and we’ll still have to go into Alder Hey for that.

“The end of treatment is coming up and we’re really looking forward to it. He really understands now that his central line will be taken out and he will be able to have a bath properly, go swimming, go to more parties.”

This month is also Blood Cancer Awareness Month, with Sharon wanting to send a message to parents who may be in the same situation as herself and Michael.

She said: “Each child is completely different so try not to compare your child to another going through treatment. You meet so many families and children in hospital as you go in and you see them regularly.

“Some children might be doing really well at the beginning and yours may not be, it doesn’t mean it’s going to have a majorly negative impact on their treatment.

“Max went through such a tough time in the beginning but found maintenance slightly easier than some kids. Some kids have it the other way round where they go really easily through the first lot of treatment then struggle through maintenance.

“Keep in the community, talk to parents, get on the groups on Facebook, talk to the nurses, no question is a stupid question whatsoever. It’s understanding the process.

“Find out as much information as you can. It does get easier. You will have nights in hospital but it does get easier. I think once you get through the first year of maintenance you understand how everything works.”