My little girl was overjoyed to meet her baby sister but I’m heartbroken I won’t live to see them grow up
AS proud Rose Reeve cuddles her giggling baby sister, mum Catherine knows she made the right decision in having another longed-for child, to give Rose a sibling and complete their family.
Catherine, 39, faced the heartbreaking dilemma of whether she should fulfil her dearest wish of giving Rose, eight, a brother or sister in the painful knowledge she would leave two children without a mother.
Catherine was diagnosed with glioblastoma - the most common aggressive brain cancer in adults - five-and-a-half years ago.
But now Skye has completed their family and Catherine vows to live in the moment.
"All the soul-searching is worth it when I see Rose and Skye together,” says speech and language teacher, Catherine, who lives in Chelmsford, Essex, with husband Steve, 44.
“Rose absolutely adores her baby sister and wants to cuddle her all the time – I desperately wanted to give her the most precious gift of a sibling so she’s not alone when I’m gone.
“Skye has brought such joy and laughter into our lives and it symbolises us moving forwards.
"Cancer robs you of so many things, why should it rob you of your dream to complete your family?”
Catherine says she has had “dark moments” since Skye was born by elective Caesarean section weighing 7lb 5oz with a mop of dark hair, on October 15.
“There is an element of guilt as I have brought another child into the world in the knowledge I won’t live to see them grow up, and will leave them without a mother,” she says.
“I don’t know how long I’m going to be around for and I have my dark moments thinking about that.
“But I try not to dwell on it because if I’m consumed with fear about the future, I can’t enjoy the precious time we have now.
"I’ve always tried to live in the moment and I’ve had to get a lot better at it since my diagnosis.”
Her new baby daughter is “surrounded by love”, she says.
“Skye is so loved and always will be when I’m not here,” says Catherine.
“She’s got Steve, her sister, my parents, aunties, uncles and cousins who all adore her – she melts everyone’s hearts with her cute little face.”
Before Catherine became ill, she and Steve were trying for another child.
She thought about having her eggs frozen but it may have delayed her treatment and recovery.
“We weren’t even sure if I could conceive after chemotherapy, so we feel even more blessed to have Skye,” says Catherine.
Catherine found out she was expecting the day before Valentine’s Day 2021.
“We sat down with Rose and said we had some good news,” she remembers.
“When we Rose told her I was pregnant and that she was going to have a little brother or sister, her little face just lit up.
“She said she wanted a sister because baby boys are smelly!”
Rose’s wish came true when the 20-week scan revealed the baby was a girl.
After Skye - whose other names are Barbara after Steve’s mum, who died last summer, and Yvonne after Catherine’s mum - was born, she had to stay in hospital for 48 hours as a precaution to make sure she hadn’t been affected by her mum’s epilepsy medication.
“Rose couldn’t come into the hospital because of Covid and was at my mum and dad’s.
"She was desperate to meet her sister,” says Catherine.
“When Skye was discharged from hospital, we went to surprise Rose.
"Mum spotted me first as we were going round the back of the house.
"It was very emotional and there were a lot of tears.
“Rose was wearing her, 'I’m a big sister’ t-shirt and her face was a picture when she saw Skye.
“She’s so helpful and fetches me muslins and wipes – she draws the line at changing nappies, though!”
Catherine had two stable MRI scans while she was pregnant but they couldn’t use contrast dye.
There is an element of guilt - I have brought another child into the world in the knowledge I won’t live to see them grow up
“My oncologist wants to do one with contrast dye in the next month – she said she’s 95% certain my tumour hasn’t grown during my pregnancy but she wants to be certain,” she explains.
“I’m trying to get Skye to take the bottle as I won’t be able to breastfeed for 24 hours,” she said.
Now Catherine is sharing her story through The Brain Tumour Charity to support its world-first UK trial of cannabis-based drug Sativex in treating glioblastoma.
The trial is set to launch at 15 NHS hospitals, following promising results from a phase I study in 27 patients.
In August, The Brain Tumour Charity launched an appeal to raise £450,000 for a clinical trial which could extend the lives of people affected by glioblastoma, the most common aggressive brain tumour in adults in the UK.
The ground-breaking campaign –spearheaded by Olympic gold medallist Tom Daley whose dad, Robert, died from brain cancer in 2011 – raised £400,000 in just three months, which means the trial is scheduled to go ahead in March 2022.
The trial, funded by The Brain Tumour Charity and led by University of Leeds researchers, will assess whether adding Sativex - an oral spray containing cannabinoids THC and CBD currently used to treat MS - to chemotherapy could extend life for thousands of people diagnosed with a recurrent glioblastoma brain tumour.
Hopes for new treatment
A MAJOR UK trial of cannabis-based drug Sativex in treating the most aggressive form of brain tumour is due to launch at 15 NHS hospitals in March, following promising results from a phase I study in 27 patients.
The new phase II trial, to be funded by The Brain Tumour Charity, will assess whether adding Sativex (an oral spray containing cannabinoids THC and CBD) to chemotherapy could extend life for thousands diagnosed with a recurrent glioblastoma, which currently has an average survival of less than 10 months.
The drug — already used in treating multiple sclerosis — was found to be tolerable in combination with chemotherapy, with the potential to extend survival, in a phase I trial in glioblastomas earlier this year.
While the phase I study observed that more patients were alive after one year in the Sativex arm compared to the placebo arm, the study was not sufficiently powered to show survival impact.
The new three-year phase II trial (ARISTOCRAT), led by Professor Susan Short at the University of Leeds and co-ordinated by the Cancer Research UK Clinical Trials Unit at the University of Birmingham, is due to begin recruiting over 230 patients across all UK nations in early 2022, after The Brain Tumour Charity raised £400,000 in just three months, which means the trial can go ahead.
It still needs £50,000 to complete the trial.
Experts hope that, should the trial prove successful, Sativex could represent one of the first additions to NHS treatment for glioblastoma patients since temozolomide chemotherapy in 2007.
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This tumour type currently has an average survival of just 10 months.
This would be a phase II trial to follow promising results from a phase I study earlier this year which looked at its effect in 27 patients.
“I am thrilled the Sativex trial is going ahead as at last it gives a glimmer of hope for people like me that they’ll have precious extra time to see their children grow up and make memories,” said Catherine.
“I am furious about the lack of funding for brain cancer, although it kills more children and young adults than any other cancer.”
Back in 2016, Catherine was an assistant head at a primary school when she started suffering headaches, which became increasingly severe and daily.
She went to the GP who put her headaches down to stress and diagnosed depression.
She was prescribed anti-depressants.
“I was never a stressy person but I thought it was plausible as I had a very full-on job,” she says.
Catherine became forgetful and in July 2016, her sixth wedding anniversary slipped her mind.
“I always remember our anniversary but it went clean out of my head until Steve handed me a card,” she remembers.
On 4 August 2016, Catherine’s mum came to the house and instantly knew her daughter “wasn’t right.”
“She took me to A&E at her local hospital as I was there physically, but like an empty shell,” she says.
THREE TO FIVE YEARS TO LIVE
Catherine had a scan, which revealed a mass on her brain, and she was sent to Queen’s Hospital, Romford for a more detailed MRI scan.
“I remember being in the ambulance with my sister and my mum had rung Steve to meet us at the hospital,” said Catherine.
“The last thing I remember is being wheeled into hospital, then everything became a blur.”
Five days later, Catherine had an operation to relieve pressure on her brain and an awake craniotomy 10 days later to remove 97% of the tumour.
Two weeks after surgery, she had an even more devastating blow when biopsy results revealed she had an incurable glioblastoma.
“Doctors told us I had three to five years to live,” says Catherine.
“Nothing can prepare you for being given a terminal diagnosis – it didn’t feel real.
“I kept thinking, ‘Why me?' and what hurt most was knowing I was hurting my family.
“It took a long time to work through my feelings.”
After she came out of hospital, Catherine had six weeks of radiotherapy and six months’ chemotherapy.
She lost movement on the right-hand side of her body, which gradually improved with physiotherapy.
She had to learn how to walk again, use a knife and fork and couldn’t drive for two-and-half years.
Poignantly, Catherine knows that one day she’ll have to say goodbye to her little girls.
“Maybe I’ll write letters or make videos for their life milestones when I can’t be with them,” said Catherine.
“But I’m not at that place yet – I’ll know when I am.
I want to live my best life while I can – making memories with Steve and our gorgeous girls
“Nothing is taboo with Steve but we aren’t ready yet to talk about what happens when I’m not here.
“We’re realistic and know what lies ahead of us as the disease inevitably progresses.
“But we choose to live in the moment and focus on the positive."
Catherine was supposed to run the London Marathon for the charity in 2020 but it was cancelled due to lockdown.
She didn’t let that deter her and did it around Chelmsford instead, raising over £5,000 and has raised £7,000 in total for the charity.
Now she’s signed up to run the marathon in 2023 “to tick it off my bucket list” and because it “helps me to help other people.”
“I want to do as much as I can and live my best life while I can – making memories with Steve and our gorgeous girls,” says Catherine.
GIVING HOPE TO OTHERS
Dr David Jenkinson, The Brain Tumour Charity’s chief scientific officer, said:
“We send Catherine and Steve our warmest congratulations on Skye’s birth and we are very grateful she is sharing her story to highlight how vital our Sativex trial is.
“We are delighted that, thanks to the support and generosity of so many in our community, the ARISTOCRAT trial will begin recruitment of patients in March 2022.
“We know there has been significant interest among patients and researchers alike for some time about the potential activity of cannabinoids in treating glioblastomas.
"We’re really excited that this world-first trial here in the UK could help accelerate these answers and are so grateful to everyone who has donated to help us make this study possible – thank you.
“The recent early-stage findings were really promising and we now look forward to understanding whether adding Sativex to chemotherapy could help offer life-extension and improved quality of life, which would be a major step forward in our ability to treat this devastating disease.
“Anyone affected by a glioblastoma can speak to us for support and information on 0808 800 0004 or by emailing firstname.lastname@example.org.
"If you need someone to talk to, we’re here for you.”