In May 2017, my older sister Harriet (Harry, to me) was diagnosed with primary high-grade medulloblastoma – a rare brain tumor in adults.
She was just 27 years old at the time.
She had had a headache for about six months, which got progressively worse. At first she thought they might be migrainethat run in our family, but Harry noticed they got worse when she moved, lifted things, or exercised.
Harry went to the doctor and she was given migraine medication and a referral for an MRI to be performed in a few months. But with a family vacation coming up, she decided to get a private scan instead.
The specialist called her a few hours after she had the scan and told her to take a taxi to Hammersmith A&E – not the tube.
They told us they found one tumor on Harriet’s brain.
Throughout her illness she was extremely brave and took every treatment thrown at her. After her first brain surgery, she had daily chemotherapy and radiotherapy, which we would drive to – we would look at it Love Island afterwards in bed together.
Focusing on mundane everyday tasks helped us get through these days as we appreciated the special time together more than ever. She had such a positive attitude in those early months and she befriended so many nurses at the Royal Marsden Hospital that it was easy to forget she had a grade 4 brain tumor.
Fundraising for the Brain Tumor Trust suddenly became a big focus for all of us
I think we once counted that she had a total of nine surgeries, hundreds of IV chemotherapy sessions, 45 radiotherapy sessions, 485 days of oral chemo, cybermesh, targeted drug therapies, and 12 platelet transfusions.
Whatever they suggested, she tried and she never complained.
Initially it looked promising. While Harry celebrated her 28ebirthday, her chemotherapy came to an end with the confirmation that there was no evidence that there was still a tumor in her brain.
But just six months later, Harry found a lump in her neck.
Her primary care physician said it was likely a reactive lymph node due to her treatment. But a routine checkup with her oncologist and follow-up surgery found that the medulloblastoma had spread.
This terrible news – that the… cancer had returned and Harry would need more cancer treatment – came just two days before Christmas.
Primary brain tumors rarely spread outside the central nervous system, but that was what happened.
Harry had surgery to remove 160 lymph nodes from her neck. But post-surgery scans also showed that the cancer had spread elsewhere as well, so she needed several chemotherapy regimens to try and keep the cancer at bay.
Just a few days after Harry was first diagnosed, my brother Henry, Harriet and I decided to start a support group for The Brain Tumor Charity and raise money for high quality brain tumor research.
The organization is the world’s largest brain tumor charity and the largest dedicated funder of brain tumor research worldwide. Because of Harry’s specific tumor type, how brain tumors generally rarely spread, and because Harry’s tumor type is not common in adults, we wanted the money we raise to be funneled directly into this specific area of research.
We need to know more about this devastating disease.
Fundraising suddenly became a big focus for all of us. Soon we started organizing rounders tournaments, used clothing sales, a black tie auction, performances, carol services and closed online wine tastings.
Many friends also boarded to raise money and they’ve run triathlons and marathons, held art auctions, bake sales, and cycle all to help our fundraising efforts and support The Brain Tumor Charity.
But in June 2020, we got the news that every cancer patient and their family fears: we were told that Harry’s treatment was no longer working.
Harry was so pragmatic when we got bad news. She would immediately start planning a social or charity event to raise more money. I think this was a distraction, but also knowing she was short on time urged her to squeeze everything she could out of life.
The following year we spent together as a family eating delicious food, drinking wine and making the most of the time we had left.
Harry’s fierce willpower and determination in the way she approached her illness and death is something I will always be in awe of.
Caring for her at home in the months before she died was deeply traumatic and yet an incredible privilege. Her attitude and outlook on life has influenced me immensely and changed the way I look at things forever. One of the last things she did was make donations to the two hospices who helped us at home – even then she kept thinking of others.
Only 12% of people survive a brain tumor diagnosis for more than five years
Life is never self-evident. Harry’s stoicism and intense courage allowed us to care for her with minimal support from others, as nurses only come once or twice a day to administer pain relief.
We have all moved home during this time and we have taken a longer time off to be with her. It meant that as a family we could be together 24/7, watch ridiculous TV shows, laugh together, cry together, and bond in ways only those who have experienced this kind of care will understand.
It was a constant source of hope and positivity for all of us that our fundraising would hopefully help others – and for Harry, that she left something behind in The Harriet Downing Fund: a dedicated fund managed by The Brain Tumor Charity to raise money and awareness specifically collect in Harry’s name.
We have raised over £230,000 for The Brain Tumor Charity to date with plans to raise much more. It is with great pride that Henry and I, along with our mother, continue the legacy of Harry’s fundraising and continue to spread awareness, fueled by our unconditional love for Harry and with her voice in our heads telling us not to give up! She is our inspiration and always will be.
Harry was a force of nature. She had an infectious personality and she was the kind of person you meet and become friends with right away. Her energy was brighter than anyone in the room. She had a way of caring so much about those she loved while being brutally honest and telling everyone exactly how she saw the world.
She was always unabashedly herself and I was lucky enough to have her as my older sister and my best friend.
We recently celebrated what would have been Harry’s 32ndbirthday with a group of her friends at a Thai restaurant in Clapham – a place Harry loved and where she often celebrated her birthdays.
When I went in to pay the deposit, the owner asked if it was for a birthday. I replied yes, it’s for my sister Harriet’s birthday, to which she replied, ‘HARRIET! What a great girl!’. She didn’t know that Harriet had died.
A while ago I also had a message on Instagram from a sweet lady with whom we followed pottery last year. She said, “Harriet was an incredible soul who had a great impact on me after that short three-hour class. I still talk about her and her fearless, strong and ambitious outlook on life.”
It is really impossible to say how many lives she touched and how much joy she brought to so many people. Given her relatively short life, I’d say this is quite an achievement. I hope I continue to have these encounters with strangers who tell me how hilarious, generous, determined and kind my sister was.
Only 12% of people survive a brain tumor diagnosis for more than five years.
While encouraging strides have been made in both research and care in recent years, progress is not moving fast enough. More needs to be invested in world-class research to diagnose the disease earlier and better understand its causes and find new treatments to give those affected hope for more time to live and a better quality of life.
The Brain Tumor Charity is committed to investing an additional £40 million over the next five years in forward-looking research to help double survival and halve the damage caused by the disease. In the meantime, it provides essential help and support to people affected by brain tumors and the enormous mental and physical trauma they can cause.
It has now been five years since my beautiful sister Harriet was diagnosed with a brain tumor that would kill her when she was only 31 years old. It’s hard to put into words the gigantic hole she left in our lives. Despite knowing she was terminally ill before she died, nothing can ever prepare you for the loss of someone you love so much and who you never knew your life without.
One day there will be a cure and countless other patients and families will face a very different outcome.
In the meantime, however, each donation is not only a step towards the end goal, but also a helping hand for each affected family.
I wanted to share my sister’s story in hopes it can help other families going through this and encourage people to consider donating to fund research.
Harriet lives on in all of us in the way we approach our lives and in the ways we try to celebrate the mundaneness of life, knowing we won’t be there forever. We hold tight to those we love, the way she taught us best, remembering the phrase she used to say, “We’re here for a good time, not a long time.”
Harriet documented her experience on Instagram @ThatCancerLife. You can also donate to The Harriet Downing Fund here. For more information visit:https://www.thebraintumourcharity.org/
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