A Bay of Plenty mother and father are desperately trying to fulfil their 3-year-old son’s bucket list of dreams before he dies of cancer.
Riding in a helicopter, going for a spin in a sports car and visiting kindy are just some of the wishes on Tutemaungaroa Hillman’s – aka Tu’s – bucket list.
Abbey and Ben Hillman, of Whakatāne, say their lives fell apart in late 2020 when they received the “horrendous” news that Tu had an aggressive rare form of brain cancer.
The couple and their six children, Jerome, 14, Kassius, 11, Braedyn, 10, Nina-Jë , 3, Tu, 3, and 6-month-old Tuhoe-Potiki live in emergency housing. Jerome also has serious health issues.
In October 2020, Tu became unwell and was “quite lethargic”, off-balance and couldn’t walk properly, his heartbroken mother Abbey Hillman said.
“We took him to a doctor three times but they kept saying it was just a virus and he would eventually get better.”
Hillman said about a week later Tu was staying with her mother – “Nana Vaughan” – in Hawke’s Bay when he needed to be rushed to hospital.
Tu underwent tests, including a CAT scan and an MRI, which revealed fluid had built up in his brain and he was taken straight to Starship Hospital, she said.
Hillman said a drain was placed into Tu’s brain to help release the pressure and a biopsy was taken of the 2cm tumour located in the pineal region of the brain.
She said doctors told her the pineoblastoma tumour was in the “worst place” but one of Starship’s neurological team agreed to operate. However, she understood the chances of removing the entire tumour were about 13 per cent.
“Unfortunately, he could only remove 98 per cent because the tumour had metastasised in the brain.
“They put a shunt into Tu’s brain to try and keep the cerebrospinal fluid from building up again.”
Hillman said her son had undergone four surgeries, including two shunt operations and a stem cells replacement, four rounds of chemotherapy, and six weeks of radiation therapy.
She said at one stage Tu was also part of a clinical trial for intensive chemotherapy until his blood platelets tests revealed he had an unknown immune deficiency disorder.
Tu spent 10 months in Starship Hospital and while his parents stayed in Auckland to be with him, his siblings were cared for by whānau, Hillman said.
In August and December last year, Hillman said they got glimmers of hope Tu may have turned the corner after two follow-up MRIs showed no signs of the disease.
“We were really excited about it as it gave us real hope that all the surgeries and treatments had finally worked.”
However, she said a third MRI on March 1 showed there were five 5cm malignant nodules on Tu’s brain.
She said Tu’s oncologist said there was nothing more they could do other than try treatments that may prolong his life for a couple more months but Tu would still be a “very sick boy”.
There was also the possible option of going overseas to be part of another clinical trial, she said.
“Tu has been a real trooper. He has never complained. No matter how sick he has been
he’s always smiling and laughing.”
But she said the pain of watching their “courageous boy” fight this “relentless monster” had been heartbreaking.
“We’ve decided Tu’s been through enough. He has already spent half his life in hospital and deserves to have the last few months at home with his family.
“Tu wants to ride in a helicopter, drive in a super sports car, ride a horse, go to his local kōhanga for a day to eat lunch with his little sister. He wants to show us all that he’s a big boy just like everyone else.”
Tu’s love of helicopters was sparked by him watching the rescue choppers from his hospital bed coming and going about 10 times a day, she said.
Hillman said Tu also loved motorbikes, music, and dancing. His beaming smile and laughter were so infectious that he made people feel good being in his presence.
“We’re determined that the last bit of our precious boy’s life will be spent enjoying the things he’s always wanted to do… With the community’s help, we hope that we can make Tu’s bucket list of dreams come true.”
A Givealittle page launched by Abbey Hillman for Tu has so far raised more than $5500.
“We are so grateful for all the support and messages of love. Our beautiful boy Tu means the world to us and we just want to make his final days the happiest days they can be.”
Life has also delivered the Hillman family another cruel blow – eldest son Jerome has a rare genetic condition called Alport-Syndrome, his mother revealed.
“He’s going blind and deaf and wears hearing aids, and also takes inhibitors because his kidneys don’t work properly. Jerome will eventually need to have a kidney transplant.”
The Rotorua Daily Post has approached Tu’s oncologist for comment about his cancer battle.
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