Posted on Friday 6 December 2019

“Her headstrong character and ability to say things as they were helped her to deal with everything – and stick two fingers up to cancer and just live.”

Mum Sara’s beautiful daughter Emily passed away aged 13, after she was diagnosed with an inoperable glioblastoma brain tumour in 2015. The family had three years of making memories with Emily before she passed away last year.

As a mum of two, Sara shares their family story this National Grief Awareness Week.

Emily and her family

“We first noticed something was not right about a month before Emily was diagnosed. You dismiss little day to day things but we started noticing Emily was tipping her head to one side ever so slightly. When I asked her why she was holding her head to one side she said she wasn’t so I didn’t mention it again.

Not long after Emily became more confrontational and argumentative to the point she had me in tears. She shouted at me in the street one day in front of my friend and I think I knew deep down then something might be wrong but I needed someone else to agree. One day my friend came over and noticed Emily’s hand eye co-ordination was not good which confirmed my suspicions so I rang the doctor thinking it was an eye problem.

I spoke to the doctor and explained the symptoms and she asked me to bring her in straight away. She did a few simple tests to see what Emily’s co-ordination was like and said she would confer with a colleague at Musgrove Hospital in Taunton. She rang me at home later in the evening saying her symptoms were alarming and we were to go to hospital for further examination and possibly a scan. I rang my husband, Andy in a panic and he hurried home.

They repeated some of the tests the GP had done and said could we come back the next day for a head scan. After the scan the doctor told us we had to go to Bristol Children’s hospital and at that moment I felt sick suddenly understanding how serious this could be. He broke the news they had seen a brain tumour on the scan. At that point our world fell apart. We were blue-lighted all the way and spent five days there. Emily had a brain biopsy and a cyst on the tumour drained which helped reduce her symptoms.

I am thankful my friend visited and encouraged me to call the doctor. If not I don’t know if we would have had the next 3 years together.

Once steroids were started we came home and were told to wait for the results but to expect it to be cancer. We were told it was a Glioblastoma in her brain stem which made it inoperable. Even if they got rid of it the tumour would return and treatment would then not help. We knew at this point we were going to lose our daughter. All we knew was it was a fast growing and aggressive so we were not even sure we would make it to Christmas.

Emily knew she had a lump and worked out it was a tumour but we held off telling her it was cancer for a week because she had her year 5 school play and the summer fete. We wanted her to enjoy these things as Emily and not the child with cancer. When I told her she reacted angrily I had kept it from her so from then she made us promise to be honest with her.

Treatment began during August with five days a week radiotherapy, meaning a daily drive to Bristol plus daily oral chemo. We hoped the radiotherapy would shrink it to give us a fighting chance but had no idea if it would work. She smashed the radiotherapy. It was traumatic watching her have a moulded mask over face screwed down so she couldn’t move. She never moaned or rang the bell for help. The staff threw a little party for her last session and lots of tears were shed having to say goodbye to the team who had become close to us.

We administered her Chemo so she could have it at home. We even went around doing the Shaun the Sheep trail and sat at the Clifton Suspension Bridge at a bench making up her medicine. Treatment continued for a year but then it was stopped due to concerns it would start damaging her organs. This was awful for us because it was like our life raft was being taken away. We were warned her symptoms could return quite quickly and to prepare ourselves.

January 2017 came and the scan showed the tumour had started to grow again and they then decided to stop further scans as it was traumatic for us all, especially Emily. She said the worst bit was waiting for the results which caused sleepless nights.

The consultant broke it to Emily there was nothing more they could do and she fled the room with the nurse. Afterwards she said she would need to FaceTime her friend to let her know she would be restarting treatment. We realised then she hadn’t taken in the news. We were in the middle of a busy street near Cabot Circus in Bristol and had to ask her did she not understand what the Consultant had said – there is no more treatment – there is nothing more they can do. She looked up at us and just asked – am I going to die? What could I say? We cradled her, walked in silence and then she asked what about dad? He’s already lost his mum, he can’t lose me too!

Our daughter was headstrong, vocal, funny, beautiful and the bravest person I know. I think her headstrong character and ability to say things as they were helped her to deal with everything - and stick two fingers up to cancer and just live.”

We went to Frankie & Benny’s as planned and we were all crying. She got a napkin and wrote a bucket list. She said well I’m not going anywhere until I’ve finished watching The Fresh Prince of Bel Air! That was at the top of her list. That was Emily- all sass and attitude.

We always knew we were going to lose her and this would happen so we had been processing it for some time. We made the decision not to tell our son until the day Emily knew. We wanted him to have hope and to feel more normal around his sister. He didn’t really respond to this news so we just gently let him know he can talk to us about anything.

The treatment gave us time and hope, but when it stopped we didn’t know how much time we had left, it was just horrible. It was fear we felt of never seeing her again. She went on to live for over another year.

During the 3 years we crammed lots in and no one would have known there was anything wrong with her. She looked healthy and beautiful. We went on holidays to France, Holland, Cornwall, Center Parcs and the Harry Potter Studios.

Make a Wish sent as on an all-inclusive VIP holiday to Euro Disney. We got to go to the front of all the queues which was amazing and we kept thinking this is great – but then you remember why you are getting that treatment and it’s a bittersweet feeling. Rays of Sunshine sent us to London where she met Little Mix and got to ride around in a limo. We did so much – she had a makeover with her friend and a group of them had a photo shoot together.

Having a hot tub was on her bucket list so we managed to get one which the company very kindly gave us at a reduced price. Her reaction was fantastic, she screamed cried and laughed at the same time. We had great times in there together.

Emily and her brother Thomas

We noticed she started to deteriorate around her birthday in November 2017. She wasn’t using her left arm properly. We went to the consultant in Bristol and checked her and said she had lost the power in her arm and left leg. From that point, within 48 hours, we had a hospital bed and everything else we might need, which made us aware things were starting to happen. By December she was using a wheelchair for any distances.

In March 2018 we got a wheelchair measured for her at Millbrook and that’s when we could see for the first time how ill she was. She quietly said to me how tired she was and asked to go home. On the way home she looked at me and just said ’I’ve got cancer mum.’ It was her acknowledgement she was actually ill now.

We used the hospice for two and a half years and without it I don’t think we would have managed to stay as strong as we all did. They became our second family.

We went to the hospice for a short respite stay not knowing it would be our last. Emily had made the choice to die at the hospice instead of at home after lots of discussions as a family. She always had the same room there which she loved but said she didn’t want that to be the room she died in so she could enjoy her stays. They wrote this in to her end of life care plan. It turned out we couldn’t have that room the last time we went in and so she got her wish.

There was always so much love for us at Charlton Farm. Her key worker Nancy was just incredible and is the most amazing woman. We all love her so much. The staff continue to stay in touch.

I think we thought we would get to go home again with her, we were now in denial. The doctor there kept encouraging us to stay longer and we had to face the reality of her deterioration. One weekend we thought we were going to lose her, I broke down saying I’m not ready. We had spent three years trying to prepare and then when it was happening I wasn’t ready. I got on the bed to say goodbye to her and then she opened her eyes and asked what time it was. We said 7am and she squealed muuum why have you woken me up? We were in joyous shock. It was a suspected bleed in the tumour that had righted itself so we got another week together.

The following week Emily said ‘I keep seeing shadows, I think I’m dying.’ I tried to suggest the morphine might be affecting her but she looked straight at me and replied ‘I know what I can see’. Two days later she said she thought it might be her last day and our hearts sank.

It must have been on the Saturday night I woke to be told by my husband her breathing had just changed. We stayed with her and even climbed on the bed and fell asleep with her. We told her it was okay to leave us. Emily took her last breath on Sunday morning and was gone.

Emily with her friends

She knew nothing about it and we knew it was time for her to let go. But for us, you’re not ever ready. The hard part for us was telling our son who was at home with family. He was 12 when she was diagnosed and 15 when she died. He is an amazing young man. He had counselling through the hospital and said tonight he would advise any siblings to grab any opportunity to talk to someone about things.

As a family we have always talked throughout the whole journey. It was Emily’s illness and she had to be given the right to own it and deal with it how she saw fit. She planned her own funeral. She approved the poems, songs and described how she wanted her coffin- bright yellow with purple flowers on-yellow was her colour and purple was her brother’s. She met with the funeral director because she wanted to know who would be looking after her after she died. She loved her teddies and so requested to have her ashes in a bear so we could hug her. She was concerned how we would feel so arranged secretly for us to have presents given to us at the crematorium. That was our Emily.

I don’t know if knowing is easier but it helps you talk and prepare. We have never known pain like it. Pure loss. There is nothing like the hole a child leaves in your heart and life. It is a black hole.

Emily grieved for the things she would not get to do and was sad we would miss out on them. Our son recently passed his GCSE’s and booked driving lessons. I cry because Emily will never have those moments but I don’t want my son’s occasions to be marred by this.

This is a hard time of year for us because as a family we had Bridgwater fair, my birthday, Thomas’s birthday, carnival, Emily’s birthday and Christmas. It’s really tough.

I would just encourage people in these situations just to talk and to plan. Emily would meet with a friend and talk about her death and funeral. Her friends spoke at the funeral. They have had to mature beyond their years and it is so overwhelming.

My son is contemplating going into cancer research and another friend was considering children’s nursing. I call it the ripple effect. If you talk about things and allow the child who is going to die to express themselves, there has got to be some good from an awful situation.

CLIC Sargent have been a huge support to us. I first met someone from CLIC Sargent at the hospital and they were brilliant. They helped us with any financial grants and Lin our social worker was great. She would come round for cups of tea and just be there to talk and support us in whatever way she could. The grants were a lifesaver. It was always nice to have numbers in your phone book of people who might be able to help.

With grief and your children, I think it is about keeping those channels open to talk to each other and opening up, asking if they are okay and letting them know nothing is out of bounds to talk about. We tell our son if we cry together that’s good, but if you don’t come and talk to us that will worry us more.

It is valuable to have counselling, someone for siblings to talk to, or parents, and to be an outlet for grief. Andy and I would take it in turns to be strong if the other was distraught. My family has been so supportive and talk about Emily all the time. Emily is still part of our family and always will be.

I worry some parents don’t talk. Grief and illness is not something to hush up. We talk about Emily, her life and her death. We celebrate her. The biggest thing for me was allowing her to own her illness. Her biggest fear was being forgotten.

Our daughter was headstrong, vocal, funny, beautiful and the bravest person I know. She was giraffe mad and we fed them at various places. She was feisty and would stand up for friends. Her friends meant the world to her and they helped her through.

I think her headstrong character and ability to say things as they were helped her to deal with everything-and stick two fingers up to cancer and just live.”

To read about ways to cope with grief and bereavement, click here.

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