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My daughter's brain tumour

Lisa Guilder’s daughter Poppy was diagnosed with a brain tumour in March 2004, at just 14 months old. Since then Poppy has had a number of cancer treatments including surgery, chemotherapy and radiotherapy. Poppy was awarded a Cancer Research UK Little Star in 2007 recognising her courage and resilience. This is Lisa’s story of caring for her ‘Little Star’.

Happy and healthy

Poppy is our elder daughter and her first year was a delight. When she was 14 months old, she developed a chest infection and I took her to the GP. He noticed that she had a squint and referred her to our local hospital to get it checked.

Getting on the rollercoaster

After an examination at our local hospital, the doctor told us Poppy was blind in her right eye. I couldn’t believe it - she was a normal active baby. She had compensated so well that there was no sign of anything wrong with her sight. A few days later we saw a consultant and the questions he asked really set alarm bells ringing. Had Poppy ever been hit by a car or had meningitis? When he mentioned a ‘brain tumour’, I became so anxious and upset that I was physically sick in the sink in the consulting room.

The next day, Poppy was referred for an MRI scan at Birmingham Children’s hospital. This was traumatic because we didn’t know what to expect. We had been told that she could go home after the scan when the sedation had worn off, but we weren't allowed home. None of the nurses made eye contact with us and I knew that they knew what was wrong. Finally the consultant called and spoke to my husband Brian, who crumpled when told that Poppy had a large brain tumour.

It was such a terrible night. We could only manage to speak to our parents and had to text everyone else, as we just couldn’t face speaking to people. I felt as if I was grieving, and Poppy was going to die. It was so odd that the rest of the world carried on - but ours had just ended.

The next day we went back to hospital to meet the brain surgeon. My dad came with us. I think he thought he would be the voice of reason, but when he saw the scan of the tumour he was just devastated.

The surgeon explained that he would not be able to remove all the cancer because of where it was. There was a main blood vessel in the middle of the tumour so there was a significant risk that Poppy could either have a stroke or die during the surgery. The surgeon then looked over at Poppy who was playing in the corner and said ‘I can't guarantee that she will be the same after the operation’. Her odds of surviving surgery were only 50/50.

We asked what would happen if Poppy didn't have surgery and were told she would be dead within months. So our only decision was whether she should have surgery in a couple of days time or wait a week. The surgeon said it would make no difference, so after some thought we decided to wait a week.

Surgery

We were so pleased we waited. As we thought we would lose Poppy, the week was so precious and we went on lots of trips to different places. It also meant the news of her diagnosis had sunk in, so we had come to terms with it more. We allowed ourselves some hope.

We also had our first visit to the cancer clinic - it was a real eye opener to see other children with cancer. It made me realise that as little as we wanted to be in it, we had joined a very special club.

The operation day was terrible. We accompanied Poppy to the anaesthetic room. When she was finally in the operating theatre I just fell to pieces. I could only be by her bed space or in the chapel. Back on the ward another patient, a little boy, said to me ‘She’ll be alright you know’ and I just prayed that she would be.

After 8 hours in surgery we were told that Poppy was in the recovery room. When we got there she was crying. I have never been so happy to hear her cry before. The first 12 hours were very difficult. She had in so many tubes that she looked like a puppet. But gradually the tubes were removed and after 24 hours Poppy was sat up in bed eating pizza! Her recovery continued well and she was allowed home less than a week later on her dad’s birthday. He has always maintained that this was his best birthday present ever.

Optic chiasm glioma

Five days after Poppy’s surgery we were told that she had an optic chiasm glioma. The surgeon was happy with the amount he had managed to remove and we were assured that the cancer was low grade. The surgeon said that hopefully Poppy would have no further problems. I was so relieved and grateful. Poppy was home and her old self. On this first weekend home, I decided I was going to do something positive - give blood and start to fund raise for the hospital and cancer research.

Sadly following this initial surgery Poppy’s tumour grew back very quickly and has continued to need treatment since. To date she has had 4 operations, 2 years of chemotherapy and 6 weeks of radiotherapy.

Living for the moment

I’m not sure how we got through those first few weeks. My husband and I made a pact that we would never cry in front of Poppy - and we never have. It has also worked out that when one of us has felt down, the other has been stronger and able to cope.

As time has gone on, hospital visits and treatments have become less frightening and more routine. When Poppy first had chemotherapy I felt as if I was taking her to be poisoned. But when the treatment finished18 months later, I almost didn’t want it to stop. I felt the chemotherapy was actively fighting the cancer - keeping it away.

Poppy has now had nearly all of the tumour removed. There is only 2mm left of the original 700mm mass left.  She still needs 3 monthly MRI scans to check on it and we are hoping hard it stays stable. She has daily growth hormone injections and aspirin because of radiotherapy. But she continues to exceed expectations. We were told that she probably wouldn’t walk, but she dances and swims and is full of fun and confidence. She is above average in a mainstream school, despite everything she's endured. 

We set up the Poppy Fields Appeal and to date have raised over £180,000 for equipment and brain tumour research.  We also set up a local support group for other parents caring for a child with a serious illness. This has been meeting monthly since December 2008 and is a real help. I try to only worry when I need to. Otherwise it is business as usual, living for the moment.

Factfile

  • Optic chiasm glioma refers to the location of the cancer in the brain. It is a very rare cancer that usually affects children and young adults under the age of 20.
  • Surgery, chemotherapy, radiotherapy form the mainstay of treatment for most childhood cancers.
  • Poppy was a Cancer Research UK Little Star in 2007. Do you know a Little Star? Cancer Research UK’s Little Star Awards, celebrating the courage of children with cancer, are open until February 2009. Visit www.cancerresearchuk.org/littlestar for more details.

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Updated: 3 January 2013