In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
The diagnosis of a brain tumour is devastating for the patient, their family and friends.
For these people life will never be the same again.
These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.
We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
You are forever in our hearts.
“When I’m laying the table or counting the girls into the car, I still feel that there’s someone missing. I don’t think that you get over grief like this, maybe you just get better at hiding it but the feelings are always there.”
Here is Lola’s story, told by her mum, Michelle de la Motte-Rice:
It was a normal Saturday morning, two-year-old Lola was having her milk on the sofa and I went over to give her a cuddle. Suddenly she threw up her milk all over me. It was really unlike her, she was rarely ill. Lola slept quite a lot that day and couldn’t keep anything down, even water, so we called the doctor who said it sounded like a tummy bug and there were loads going around. Reassured, we took her to the park the next day but she still wasn’t herself, yet didn’t have a temperature and didn’t appear to be getting any worse.
On Monday, Lola said to me: “Mummy, I’ve got a headache.” Meningitis crossed my mind then, but she still didn’t seem to have many symptoms. The GP visited us at home that day as I was also with Lola’s baby sister Ava. He still thought it was just a bug and Lola was probably a bit dehydrated. Later that night, Lola couldn’t sleep. She was completely hyper, jumping about on the bed at 9pm, shouting “nee nah, nee nah” like a siren. Lola was normally quite calm and quiet, so this was unusual. My husband John, Lola’s dad, finally got her to sleep, but she was up a lot in the night and he was too tired to go to work the next day.
Lola seemed a bit better on Tuesday. I made her a boiled egg and Noddy was on the TV in the background. John and I were watching the girls, Ava crawling about on the floor and Lola sitting on the sofa, and talked about how lovely they were and how lucky we were to have them. It seems like such a cruel irony looking back now. Suddenly, Lola stopped eating, her eyes glazed over and I noticed her hands slightly trembling. It was terrifying to see. John instantly said: “we need to take her to hospital, I’ll drive.” As we were leaving, the GP phoned to check on Lola, he still didn’t seem worried as she wasn’t having big, jerky seizures. This time, we weren’t so sure that she was fine.
We raced the girls into the car, with Lola wrapped in a blanket snatched up from the sofa. She was on my lap, with the seatbelt strapped across both of us and fell asleep almost immediately. Once we got to A&E, the medical staff were asking lots of questions and trying to wake Lola but she wasn’t stirring. We all tried everything, talking to her about her favourite CBeebies characters and coaxing her, finally John put on a deep, gruff voice and told her she had to wake up, he even said “Daddy’s getting angry now, Lola.” You could see that she was really trying to open her eyes but just didn’t seem to have the strength. We called a couple of close family members, telling them that the doctor thought it might be meningitis and they had to collect Ava, who was still with us in the hospital.
They moved Lola to a smaller room, they were doing lots of tests and she was now hooked up to a heart monitor. We were so worried, but pretty calm. I still thought she was going to be okay. The doctors eventually decided to give her a brain scan. We weren’t allowed to go with her and when the doctor opened the door afterwards, I looked straight at him, questioningly. He dropped his eyes and I instantly knew something was seriously wrong. We heard the horrific news that Lola had a large brain tumour covering the right side of her brain and I completely lost it. I am not a crier, certainly not in front of anyone, but I burst into tears. People use that phrase all the time, but I never really knew what it meant before then… the absolute explosion of pain and fear I felt.
We were told that Lola needed surgery at St Thomas’ Hospital in London and, in the meantime, she was moved again, this time to Intensive Care. Seeing our baby girl surrounded by machines was torture, we couldn’t even get close enough to hold her. I was starting to get hold of myself and now it was John’s turn to crash. He slid down the wall he was standing against, his head in his hands, repeating “it’s in the brain, we’ve lost her”. I refused to believe the worst, that Lola could actually be dying, I was convinced she would be fine.
Only one of us could go with her, so I went in the ambulance. I have never got to London so fast, especially as it was now evening rush hour, the sirens and lights were going the whole way. I watched Lola obsessively but couldn’t reach to hold her little hand. She was still wrapped in our blanket from home. In the small paediatric ward at St Thomas’s I sat next to Lola’s bed, trying to forget about the priest walking around as the sight freaked me out. Lola wasn’t conscious, but I kept telling her the story of “Goldilocks and the Three Bears” and softly singing her favourite song “You are my sunshine”. I couldn’t bring myself to sing the part “please don’t take my sunshine away”... I can’t listen to that song now.
The neurosurgeon showed me the picture from Lola’s brain scan. He held it up over a light box and there it was, covering the right side of her brain, it just looked like a dark shadow. I was now face to face with this "thing" that was causing us all so much pain. I felt numb and alone. John, without the benefit of flashing blue lights, was still on his way up to London with his brothers. The surgeon talked to me, but I couldn’t take it all in and couldn’t articulate any questions for him. He explained that they would have to operate to remove the tumour in the morning and that we should try and get some rest tonight.
As I sat back down next to Lola, the terror and fear really set in and, for the first time since it had all started, the reality of what might be happening hit me. I felt physically sick and immediately put the thought out of my head. "She's going to be fine" I said out loud to myself. I started rambling to Lola about all the toys she had asked about for her birthday, telling her that when she was better Mummy was going to buy her the "Fifi" house that she wanted so desperately.
Thankfully, John then arrived with his two brothers, along with other members of our families. We had such amazing support from family and friends during the whole nightmare time and I’m so grateful to them. The nurses were wonderful too, so kind and caring. They advised us to go and get something to eat and have a break, before Lola’s surgery in the morning. The family left too, planning to come back the following day. We were reluctant but left for a short time.
John and I had barely stepped out of the lift when our mobile rang, calling us back. We literally ran back to the ward to find a lot of people around Lola, preparing her for emergency surgery. "Lola's had a bleed to the brain, we need to operate now!" said someone. Within minutes she was being rushed to theatre, while we were left in the corridor watching her being wheeled away.
We were shown to a tiny room with two beds to wait, we just lay there for a while until John finally spoke; "shall we pray?" he asked. We were desperate. John, although raised a Catholic, wasn’t really religious. We got down on our knees, held hands and prayed, prayed so hard and begged God. We would be better, go to church, anything... just make her well. We texted everyone we knew, asking them to pray too, wanting to do whatever we could.
A few of the family had come back to the hospital to wait with us, it was the early hours of Wednesday morning, so we all sat in the corridor waiting for news. Some hours later the young surgeon, who had taken Lola down to theatre, wheeled her back. There was blood all over his shoes. I looked at him, desperate, hoping for something to cling to. "She's critical" he said. At this point his mobile rang and, to my surprise and shock, he answered it, talking loudly and saying: "yeah, all right mate, I'll be there in a minute." I was so infuriated by his complete lack of respect and empathy to Lola, myself and John in that moment. That feeling has stayed with me.
We stayed close to Lola, who lay still with a very large plaster over the top of her head. After a while, I slumped into an exhausted sleep on the chair next to her, thinking that maybe I would wake up and find it was all just a horrible dream. We were scared, but still had hope then. Neither or us snatched more than an hour’s sleep. In the morning, one of the doctors explained that Lola would need a great deal of care and recovery time and we needed to prepare ourselves for the long road ahead. We were both so relieved that it seemed like she was going to make it.
Unfortunately, though, that turned out not to be true. Only an hour or so later, on the Wednesday morning, the doctors came to tell us the worst possible news. Lola's brain was dead, the only thing keeping her alive were the machines. Even now, when I close my eyes and think of that moment, my body goes numb and I have to shake myself out of it. I still cannot face that moment. I was hysterical but we still had to call and tell people, so they could come and say goodbye. I remember John saying that we needed to get people to pull over, to not tell them while they were driving.
They moved Lola into her own private room, most of the family had arrived now. I remember going into the bathroom to be alone, the pain was so horrendous I could not stand. "I don't know what to do, Lola" I said out loud. I can’t explain it, but I felt a warmth all around me, just for a second or two, and I knew she was gone. That night, with all her family around her, she was given the last rites. They all kissed her goodbye and left us alone with our darling girl. I held her in my arms as they turned off the machine, her little heart was still beating. She was so heavy. I passed her to John and Lola left this world the same way she had entered it, in the arms of her ever-loving Daddy. She was two years and eight months old.
The hospital asked if we wanted to take hand and foot prints, but John was determined just to take her home. Having the body at home, so people can pay their respects, is quite normal in parts of Scotland – where John is from – and Sri Lanka, where my family is from. We had to sign all the appropriate forms and contact a funeral director but were then allowed to take her back home. John carried her outside over his shoulder and we drove home from London in silence, with Lola lying across her uncles’ knees on the back seat.
At home in Shoreham, we took Lola back up to her own bed and we stayed with her, never leaving her alone, even sleeping in there. I knew I didn’t want to start drinking and I hadn’t smoked in years, but I went out and smoked cigarette after cigarette. John was keeping himself busy, putting up photos of Lola everywhere. He lost his faith completely after Lola’s death, but I found mine again. I took some small comfort in the idea that Lola was in a better place. John’s lovely mother had died the year before, almost to the day, and I imagined them together.
It was so hard to keep going. My friend, who had been taking care of Ava for us, brought her back again on Thursday. It was wonderful to see her but I wasn’t really capable of thinking practically at that point. Thankfully our families were around and looked after all three of us. Ava gave me a reason to try to stay strong, I looked at her little face, not knowing anything had happened, and thought “she needs me”. The GP called and asked if he could visit that day. He was so apologetic but we didn’t blame him. How could he have known? John and I were both so devastated; I think real, deep, sadness is a much more powerful emotion than anger.
The funeral was a week later. The funeral directors had been and Lola was in an open coffin in her room, with candles burning all around her. I couldn’t watch them shut the tiny coffin. John and his brothers carried it to the funeral car. I don’t recall hearing any of the service at my old family church in Hove, but it was packed with hundreds of people there. I remember, on the way, getting frustrated to see that passers-by barely looked at the funeral procession. One father, with several children around him, did a shocked double-take when he saw the size of the coffin and I was grateful for that. How could people just be going on oblivious when our world had collapsed?
At the cemetery, I fell to my knees and people grabbed me. I think they thought I was going to jump in the grave after her coffin, or something. I needed to leave quickly and just get home. The family came back to the house too and we played a home-made DVD with pictures of Lola and her favourite music, she loved the Sugababes. I was talking to the nun who had sung at the funeral, she told me to ask Lola for strength and said that we would get through this. She was so perceptive and even told me directly “no one believes all the time” when I mentioned John’s loss of faith.
A couple of months after Lola’s death, the hospital invited us to come in and talk to the surgeon. It was the first time we found out exactly what she had: a rare form of brain tumour called ependymoma. We were asking questions about whether it’s hereditary and if she had it from birth or more recently and they couldn’t tell us. I was so shocked to understand that they just didn’t know. It was around then that I started to look into brain tumours and the lack of knowledge around them, and to discover the charity Brain Tumour Research.
People can be so kind. Everyone hugs you and says things like “I don’t know how you’re coping!” You just do, don’t you… what’s the choice? Ten years on, I think about Lola every single day but I can’t think about the funeral or that tiny coffin. I have to physically shake my head to get it out. I felt very strongly that I needed to have another baby and Reya was born the following April, followed by Lila-Bleu three years later. I always tell people that I have four girls – although I tend to avoid meeting new people where I have to explain about Lola. When I’m laying the table or counting them into the car, I still feel that there’s someone missing. I don’t think that you get over grief like that, maybe you just get better at hiding it but the feelings are always there. For the first few weeks, John and I watched films constantly to fill the emptiness.
We always talk about Lola at home, telling the children that she’s their guardian angel and celebrating her birthday each year. She would have been 13 this year, a teenager. There’s pictures everywhere and the younger girls wore her old clothes when they were small enough. We still have a little grey hoodie with a pink star that I used to sit with the arms wrapped around my neck.
We used to go to the grave all the time and I searched for something pretty and bright to go on the graveside but failed. I ended up starting a little business, Gifts for Angels, with colourful, beautiful ornaments and vases for other grieving families, it’s been a good distraction for me. When Ava started school I became friends with another mum who also had her own business, Vivacious Events, and we decided to get together and organise an event to raise funds for Brain Tumour Research.
When we held the first “Brighton Ball” in 2014, it was full of family, friends and colleagues, most of whom hadn’t been in the same room together since Lola’s funeral. We raised thousands of pounds and had incredible support from local companies donating prizes. Now we are planning it to be a biennial event, it feels like we’re doing something important. Research is the only way forward, so this doesn’t keep happening to more parents.
Michelle de la Motte-Rice