Raising funds for The Brain Tumour Charity in Alice's memory.
Alice was such a happy playful little girl who at just over two years old was just discovering the delights of language. She loved to say her name in full and reel off her parents' names. In hospital she would like to recite “The Gruffalo" with Daddy and would say “I know all the words." She adored Peppa Pig and had an even closer relationship with George Pig – perhaps seeing in him the little brother that she so wanted as well. The Christmas before she died when asked what she would like as a present she said “a Peppa Pig World". We her parents were so enjoying our lives with her.
A few months shy of her second birthday, Alice developed a squint in her right eye. She was prescribed glasses by the eye hospital and surprised us all by how readily she accepted wearing them. A month after her second birthday, in October, we noticed that she was knocking into things when walking and running and after another month she would use the wall as support when moving from room to room. She had also started to vomit at night. Repeated visits to the GP put this down to ear infections. We and her lovely nursery were extremely worried about her.
Alice's symptoms worsened over Christmas 2010 and on 6th January 2011 another GP finally suggested we go urgently to A&E at our local hospital. There the consultant broke the shocking news to us that she suspected a brain tumour and this was confirmed by CT scan. The next day we were on our way to a neuro-surgical unit to prepare for her operation. If the tumour had been left, the pressure would have built up in her skull causing brain damage.
Although Alice's brain tumour (Medullablastoma) was rare and virulent and in her case had already metastasized to her spine, she amazed us with her recovery from her operation to remove it. Daddy's balloon therapy of blowing up balloons and letting them off round the ward had her in fits of giggles only days after she came round from surgery. Because of the strong likelihood of the cancer recurring and spreading we took up residence at a specialist hospital for chemotherapy. I shall never forget how sweet Alice was when asking, “Can I help you?" of the nurses whenever they had to take blood.
Despite the new and unfamiliar surroundings we settled into a good routine and she loved trotting down to the playroom to play with the train set every day whilst we struggled to keep up with her as we rolled the awkward drugs dispenser. She responded well to the two cycles of chemotherapy that she underwent, and following a routine scan we were told that the cancer had almost disappeared. This gave us such hope that after the planned five or so rounds of chemotherapy and possible additional radiotherapy Alice would beat the 50:50 odds and be able to take up her normal life again, albeit with monitoring for signs of recurrence
However, less than three months after her initial surgery she would be dead. The same symptoms of vomiting, lethargy and wobbliness returned in March 2011. Over a two week period during which she was an in-patient at our local hospital and whilst under an oncology consultant, hydrocephalus went undiagnosed until massive brain damage had already set in and we were given the unspeakable news that since there was no brain activity, she was unable to breathe unaided and therefore we should consider switching off her ventilator.
We took her home to die in her bedroom at the end of March 2011, the saddest day of our lives. The loss of our daughter has changed our lives forever. However we are determined to do all we can to raise awareness of brain tumours and the untreated hydrocephalus which cut short her life so prematurely. We want diagnoses to be made earlier so that treatment can be more successful and monitoring for recurring hydrocephalus to take place. If it were at all possible, we would wish that no other parent undergo what we have undergone.
Hydrocephalus (raised intercranial pressure) can be a sign of a brain tumour or occur after tumour removal but yet as we have seen to our cost it is frequently not recognized by the medical profession. Alice suffered from hydrocephalus twice. The signs of hydrocephalus which Alice displayed were her walking and running gradually becoming more clumsy as she bumped into things, vomiting at night and often seeming lethargic. In addition, her squint which had appeared six months before the diagnosis, disappeared when hydrocephalus was present. These symptoms are amongst those listed in the HeadSmart brain tumour awareness leaflet which you can find on the HeadSmart website.