How can I sum up 10 months (and counting) of support from Helen House?

Our then-seven-year old daughter Neve was diagnosed with brain cancer last summer. She was referred to Helen House in October 2020, when she needed more support with managing some of the challenging symptoms. At this point, she was having active treatment for her cancer, with the hope that it could be cured. However, since we knew that her cancer was aggressive and likely to reoccur, our initial thoughts were to develop a relationship with Helen House, before Neve needed medical support from them. We met the outreach team and then Neve had a fun-filled day visit to Helen House. She was hooked and so were we. Little did we know that we would be needing Helen House within weeks.

By the end of November, we discovered that Neve’s cancer treatments were not working, there was no hope of a cure and she was not likely to survive more than a year. Within days of this news, on her first overnight stay at Helen House, Neve had a prolonged tonic clonic seizure and ended up in intensive care. We were scared and lost. One of the Helen House doctors came to see us in hospital and I won’t ever forget her words, “we will scoop you up now.” And that was that. They became Neve’s people and Helen House became Neve’s second home.

Quite early on, I knew that I would want to fundraise for Helen & Douglas House charity because I could see what a difference they were going to make in our lives. I also know how hard it is for charities in the current climate. Helen & Douglas House has provided so much of the palliative care support that Neve has been receiving this year. Only about 17% of the charity's £3.5 million budget comes from government funding. The other 83% (approximately £2.9 million) rest needs to be fundraised for from the public, which is not an easy feat.

I am not a runner by any stretch of the imagination. In fact, I only started running during the first lockdown, when I did Couch to 5k with my eldest. Running 5k under 30 minutes is still a far off dream. Needless to say, running a half-marathon is a big deal for me and my goal is just to finish. But I am determined to do it, because I want to say thank you to Helen House. I am asking as many people as possible to support me, to help Helen House to continue to support families like ours and children like Neve. When the running feels hard, I remind myself of what Neve goes through every day and this keeps me going.

We have received so many small and large kindnesses from Helen House; here are just a few.

• Neve became the first child to have Freddos (chocolate frogs) added to her drug chart, prescribed alongside emergency seizure medication.

• At the start of her time there, Neve’s appetite was low, due to chemotherapy. Mostly she ate omelettes, prepared in a very specific way. Each member of the care team who looked after her learnt how to make Neve’s omelette, exactly the way she liked it.

• The medical support from the outreach nurses, the care team and the doctors has been crucial in supporting us to have Neve at home with us. They are never more than a phone call or text away and, because they know Neve so well, so much support can be provided at a distance. It is a rare day that I don’t communicate with somebody from Helen House.

• When Neve started visiting Helen House, we learnt that they have a hydrotherapy pool but that it was closed. In the meantime, Neve loved every minute of her bath time in a huge bathtub at HH. But an exciting day came when the hydrotherapy pool was fixed and opened and — knowing how much Neve loves to swim — she was offered the first dip in the pool. For her to be able to swim, with all the necessary medical care and support around her, has been amazing.

• Speaking of bath time at Helen House, this was rarely a calm affair. Neve would convince the care team to fill the bath to the very top and to make it nice and hot. Then she would use syringes to spray water at the nurses and carers, turning it into riots of fun, full of laughter and giggles. Nobody was safe from a soaking, not even the consultant who occasionally stayed to help with bath time!

• Neve has a lot of trauma and fear related to Covid testing, from her time spent in hospital. When the hospice decided that everybody coming in needed a Covid test, we were really worried that Neve would just not cope. They sent out a play specialist to our house to talk her through it. From then on, when we would arrive for a visit at Helen House, the care team would have a Covid swab ready for her, plus a bowl of Coco Pops to cheer her up.

• I will never forget the time I received a phone call from the care team, asking whether it would be OK if they painted Neve’s nails. This felt like such a small thing, given everything else she was going through, but it highlighted how much they wanted to ensure that they were looking after Neve in the way we would want them to. They were always very clear that we were the experts in Neve and that they were there to learn from us, in how best to care for her and communicate with her.

• On Boxing day, Neve woke up with a severe headache and vomiting. It wasn’t long before the Helen House on call doctor rang me back to figure out how to help Neve. She quickly concluded that Neve needed steroids and I wondered how this would work, on a holiday. However, by the end of the day, Neve had started on the first dose, prescribed and sourced from a local pharmacy, on a bank holiday.

• Neve’s pain has always been very complex and not easily resolved. She has needed her doctors to be willing to think outside the box, in terms of types of medication and doses. One day it became clear that she needed a new medication, that isn’t something commonly used in children, or easy to get. The doctor and her team spent the day calling all around Oxfordshire, looking for it, and when they found the few doses available, they went to collect them. At the end of the day, the consultant appeared on our doorstep with this new medication. She came in and sat with us while we worked out how best to use it, not appearing to be in a rush at all, despite it being the end of her day.

• The care extends beyond Neve herself. One day, I was on the phone to a Helen House doctor and nurse and it was clear to them that I was having a hard time. They immediately suggested that I bring in Neve for a day visit that weekend and that they would make up a flat for me to spend the day in, to have some space for myself and to rest and even to sleep. It was a day of respite, to have quiet time alone, to be fed and to know that Neve was happy and safe in the hands of the Helen House care team.

• Neve was invited for a day visit to Helen House, on my birthday. I wasn’t sure whether to say yes or not, but the care team gently supported me to see that Neve could have a fun time there and I could still spend time with her too, when she came home. Much to my surprise, when she arrived home later that day, she had made a cake just for me and came bearing flowers and a beautiful card full of photos of her making the cake, all organised by the care team.

• Helen House support goes beyond just Neve. There is also a sibling support team to support Neve’s sisters. They have 1:1 support, doing activities that work for them and they can also join the sibling support groups, doing a range of fun activities, initially virtually but now in person as well, such as bowling, laser tag and more.

• Pain relief is not always of the pharmaceutical variety. One day, when Neve had been in a lot of pain, she had asked for a squishy, laughing banana, with a face. She said this would make the pain go away. We scoured the internet in vain. I mentioned all of this in passing to an Helen House doctor and thought nothing more of it. A few weeks later, Neve received a parcel in the post. Inside, was a squishy, laughing banana with a face, handcrafted by the doctor and her surgeon husband. Neve was overjoyed! This has turned into a collection of squishy, laughing fruit and vegetables, which make Neve smile when things are tough. Often, this is the best pain relief!

My list could go on and on. Helen House has brought so much to Neve’s life over the past year, from medical care and social support to fun and joy. If a child has to face what Neve is facing, then doing so with the support of a children’s hospice like Helen House can make the world of difference. This past year has been incredibly hard for our family and for Neve and I dread to think how much worse it would have been without Helen House in our life. As the doctor said to us that day in intensive care, they really have scooped us up.