The Imogen Whitby Fund

Raising funds for The Brain Tumour Charity in loving memory of Imogen.

Imogen's Story

After several years of IVF we were very lucky to get pregnant with Imogen and her twin sister Angel. Sadly at 20 weeks we had that awful news every parent dreads that one of our girls was very ill and wouldn't make it.

Unfortunately at 31 weeks Angel passed away and Imogen battled on until she fancied a cuddle at 38 weeks (despite mum being in hospital with sepsis and many other complications). Up until July 2016 Imogen was a playful 19 month old girl who loved nothing more than peppa pig, making endless cups of pretend tea, eating baked beans one by one with her fingers, putting on her shoes, and chasing the dog around the garden.

On 30 August 2016 after a few weeks of being sick and wobbly on her feet we took her to the out of hours GP and it ended up turning our world upside down. After scans and tests she was diagnosed with an aggressive malignant grade 4 brain tumour called a Medulloblastoma. She had a 9 hour operation to remove this on 2nd September, after a long debate about wearing her shoes to the operating theatre I might point out. The surgery was able to remove most of the tumour but a slither remained due to being too risky to remove.

Due to the surgery and the location of the tumour we "lost" the fun loving crazy girl we know and love, and had to work hard with the physios, OTs and Speech and language therapists to see if we could unlock our girl and bring her back to us. She had to learn how to move, smile, grip, speak, swallow, and was very weak in her movements, she could only walk if you held her up. On top of this she needed further emergency surgery to insert a shunt to help relive the pressure in her brain at the end of September. She started an intensive 9 months of Chemo in October (it was a hard, kick ass approach with a hope of a cure). First however she had to have another operation to remove her ovary for preservation (in the hope she may have had children one day as chemo would have left her infertile) and other procedures to help her cope with Chemo (Hickman line, gastric peg, lumbar puncture). The chemo slowed down her rehab of getting her to walk, talk and swallow, and it was a long while till we heard a whisper of "Mummy" and "Daddy".

Imogen got every side effect from chemo, even the rare ones so was very poorly. She always remained true to her personality, she smiled, cuddled her bunny, and didn't cry or complain. She was so brave and a true hero for one so young. Before Christmas we got the wonderful news we hoped for that she had beaten the tumour and there was no sight of it. She still needed the chemo as planned but she was doing well. It made it almost worth her loosing her hair, being sick, and generally being poorly to know she was fighting it. At this point we had hardly left the hospital other than the odd weekend so on Christmas Eve we were allowed home for 2 weeks apart from a blood transfusion and a check up. Imogen was quite ill over Christmas and couldn't keep anything down despite being very hungry all the time.

She was losing weight and looking worse and worse. In January she had her stem cell harvest for her high dose chemo in March, but soon her health deteriorated and we all became quite worried about her. Sadly an MRI showed that although the original tumour had not returned, the cancer now covered the whole of her brain and she has some in her spinal chord too. They gave her weeks or days to live and we moved to a hospice to help us trough her last part of the journey. So much changed in those few weeks we didn't have time to think, but Immy continued to be her usual brave self and give us Bunny to cuddle and her wonderful smile. Imogen passed away in Mummy's arms on Monday 23rd January almost 5 months after her original diagnosis. She was so very brave and a wonderful person to be with. It has broken our hearts and we miss her so much, she is an inspiration and we are very proud to be her paren

We want to raise awareness of brain tumours and the misdiagnosis that often happens. Mummy took Immy to the GP 5 times until someone listened to her concerns and sent her to the hospital. It might not have saved her but it might save someone else from going through this horrible journey.