hopeful  | 

Parents of boy (6) with rare aggressive cancer share their hopes of US vaccine trial that could change his life

Lisa and Lar Norris hope to take their son abroad for treatment once he is discharged from Crumlin in the new year
Danny Norris

Danny Norris

Clodagh Meaney

Parents of a six-year-old Wexford boy with cancer have shared their hopes for getting their son to New York and onto a vaccine trial that could change his life.

Danny Norris was diagnosed with neuroblastoma in July 2020, and is currently on his second last round of immunotherapy as part of the last phase of his treatment plan.

Neuroblastoma is a cancer of the sympathetic nervous system, with tumours often occurring in the adrenal glands or abdomen. This rare and aggressive form of childhood cancer affects approximately 7 to 10 children in Ireland annually. At diagnosis, High Risk Neuroblastoma carries a relapse rate of 60%.

Danny’s parents, Lar and Lisa, told Sunday World about their son's current treatment and why taking him to America is their best bet in the fight against relapse.

“Danny’s on his second last immunotherapy pump. So he's been on 5 cycles for 35 days so this is the fourth one that he's on at the moment. He's responding well, really really well to the treatment and they're really happy with the progress.”

“Over the course of the [35 days] he takes meds to repair his body before he goes on the immunotherapy pump, which is an antibody that fights the neuroblastoma cells,” Lisa said, explaining how the treatment works.

“He stays on the pump now for 10 days, so he has to get it changed. The first pump stays on for two days, and then he has two four day pumps.”

Danny with his mum Lisa, father Lar and brothers Charlie and Shay.

Danny with his mum Lisa, father Lar and brothers Charlie and Shay.

Initially, Danny had a tumour on the left side of his abdomen which encompassed his left kidney and adrenal glands. To date, Danny has had to endure 12 rounds of chemotherapy, a nephrectomy (to remove his kidney), high dose chemotherapy, a stem cell transplant, seven nights in ICU due to complications arising from high dose chemo, 23 rounds of radiotherapy as well as multiple bone marrow aspirates, blood transfusions and other medical procedures, scans, and feeding tubes - all in the midst of a global pandemic.

“It has been tough going at times, but your priority is your kids. We have a very definite treatment plan which is helpful so we know exactly what to expect in terms of neuroblastoma protocol,” Lisa said.

“We knew what treatment was ahead of us, but obviously within that there’s a lot of uncertainty about how Danny will respond to it.”

The next step in Danny’s care is a Bivalent Vaccine trial at Memorial Sloane Kettering Hospital (MSK) in New York. It is a cutting edge treatment that is not currently available in Ireland.

“The vaccine trial is an extension of the immunotherapy drug that he's on right now. The immunotherapy drug, the way it works, it’s training the body to recognise the neuroblastoma cells, and to attack them and kill them,” his father Lar explained.

“When he comes off [the immunotherapy drug] in the New Year, the benefits are short term, the antibodies will wear off.”

“The team in MSK, in America, are developing a longer term immune response so it’s a series of vaccines.”

The treatment involves getting many vaccines over the course of five years. Seven in year one, four in year two and one for the following three years.

“So that's going to give him long term protection, his immune system will recognise if any neuroblastoma cells decide to come back, he'll have antibodies there to target them, and get rid of them. That's what the vaccine trial is about.”

“It's about being proactive in terms of keeping him cancer free,” they explained.

The family are currently trying to raise funds through GoFundMe in order to help them pay for the expensive treatment required to improve their youngest son’s life. So far they have raised just over €150,000 of their €380,000 goal.

“With neuroblastoma, the important thing to highlight is the high rate of relapse. There's a 60% chance Danny would relapse, but obviously there's a 40% chance that he wouldn't but I suppose as parents we feel it's our obligation to do everything in our power we can to give him every chance we can.”

“Our oncologist, and the team in Crumlin are very supportive of Danny’s care and anything that will help him long term.”

The Norris family remain positive that the treatment will be of huge benefit to their young son.

“We have spoken to other parents who have made the journey to MSK and are currently on the trial there. It’s very hopeful for us, the feedback we’ve got from other families who've already started this process is very positive.”

It hasn’t been easy for the Norris family. Over the last year they have been juggling three kids; Danny, and his brothers Charlie (10) and Shay (8), Danny’s treatment, a global pandemic and all the usual tasks that come with having a young family.

“Watching your little baby going through gruelling treatment and all the side effects that come with it, it’s not ideal by any means,” Lisa said.

Her husband Lar added: “Just trying to balance between the amount of appointments that he has between going to Crumlin and Tipperary University Hospital, and for the other two boys just trying to keep life as normal as possible while Lisa or myself are up with Danny.”

The couple praised those close to them for helping Danny get to where he is in his treatment now.

“We want to emphasise the great care that Danny has got in Crumlin,” Lisa added, praising her son’s oncologist, as well as the team in Clonmel at Tipperary Hospital.

“The response we've got from our friends, the community, our work colleagues, since we started the GoFundMe has been phenomenal, and even the strangers, people we don’t know - it's so heartening.”

“If you could get him there on good will, he’d be there already.”

“It’s not just the financial donations, people are giving up their time, coming up with ideas, and messages of support.”

You can donate to their fundraiser here.

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