Our one-and-only little girl Zoé had just turned 8 years old when she passed away from DIPG on 12th June 2019 at Naomi House’s Children Hospice.
She bravely fought that inoperable and incurable highly aggressive brain tumour for just over three years.
We are left heartbroken without our little Miss Sunshine…
Zoé had radiation in June 2016 at Southampton General Hospital and then re-radiation in May 2017, which only provided a temporary respite. The NHS had then nothing else to offer apart from palliative care, which we declined. In June 2017, Zoe was accepted for experimental treatment in a private clinic in Monterrey, Mexico, which was at the time the destination of ‘hope’ for children & families affected by DIPG.
The treatments there combined intra-arterial chemotherapy (c. £13,000 per injection) and immunotherapy (c.£12,000 per injection) with an extra £3,400 for each hospital stay and an MRI every time. Obviously, there were other costs on top of that like flights, accommodation, transport, food, medication, but also any complication medical-wise. We fundraised and funded everything thanks to the huge help we received from our family, British/French/Mexican friends, charities, Facebook supporters. Solidarity and support were truly amazing and special throughout Zoé’s fight up until the end, and we still cannot find the words to express our gratitude in the face of such generosity.
Zoé received four immunotherapies, 16 IA treatments and 25 sessions of hyperbaric chamber, to which Zoe responded rather well from her MRIs but also clinically. Between June 2017 and October 2018, we spent two summers in Mexico as a family and Zoé and I her Mummy and carer travelled there every six weeks the rest of the time. We would have had more treatments had Zoé not developed a new condition as a result from the radiotherapy which would put her at a high risk of a stroke, and we were then dissuaded from travelling. The time to get a second opinion from Great Ormond Street Hospital in London three months later and Zoé was in progression.
With less than 4% funds dedicated to research in all paediatric cancers combined, it unsurprisingly results in the lack of progress in the DIPG research everywhere over the last 60 years and a lack of a cure. We found it extremely frustrating that in the 21st century we had to travel abroad and on the other side of the world to get our daughter treated to try and save her.
Zoé fought really hard, and us parents did everything possible to keep her with us as long and as well as possible. We ventured a last treatment on 5th February 2019, which combined with progression went wrong and deteriorated Zoé’s health further despite all of our efforts to optimize the medical conditions around the intervention.
Getting Zoé back to the UK in March was hell, and we realise how lucky we are for that. The experience was traumatising. As soon as we were back from Mexico, the NHS proved be very useful once again. They provided us with all the help and equipment we needed for Zoé and us her parents. And that is when we found out about the existence of our local ‘Naomi House’ hospice for the first time.
Understandably, the word hospice itself scared us. We had no idea what to expect and were reluctant to go there for/with Zoé. However, we were pleasantly surprised for all the practical and emotional support, care, flexibility, kindness and smiles they brought to Zoé and our family whilst she was with us but also once she became an angel. We can only be thankful and grateful for such a beautiful institution for our sick kids and our families. We received respite care, but also end-of-life care there. We were all the more impressed by such a wonderful concept as it is specifically British and does not exist in France, our country of origin.
Back in 2016, we set up a page on Facebook - Princess Zoé atteinte de DIPG on Facebook. We wanted to shine a light on our 5-year-old Zoé’s fight with DIPG and share our little Zozo’s journey through illness with friends and family, but also share our experiences to help others who may be going through the same illness/trauma.
Emilie, Zoé’s mother.
Fight DIPG with Us—Your Donation Can Bring a Cure
We need your help to take down DIPG, the deadliest childhood brain cancer. Abbie’s Army is leading the fight with critical research, but we can’t do it alone. By donating today, you join us in the battle to find a cure and give hope to families everywhere. Let’s fight together—donate now.
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