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ABOUT KALEIGH

TIMELINE

OUR STORY

Like most girls her age, our Kaleigh enjoys being a princess, attending dance lessons, singing, swimming and playing with her friends. But more importantly being the loving daughter to us and the caring big sister to her 5 year old brother Carson. We are a very typical young family and have always lived in Essex/ Woodford area where our 2 children attend the local neighbourhood school and my wife and I would commute into London to work.

THE BEGINNING

On Thursday 14th of April 2016, she didn’t seem her usual self. She had complained of double vision which we had put down to the cold she had been carrying, which we thought was getting heavier and had decided to keep her home from school.

To our relief, everything appeared to be okay the next day and Kaleigh was well enough to attend school and get back to being the vibrant little girl we all knew and loved.

We were eating breakfast on the morning of Saturday the 16th of April 2016 before getting ready for Chinese School, when Kaleigh laughed that she could see two of me, and we noticed her left eye turning slightly inwards.

I got in contact with a friend who is also our optician to ask for his opinion. He suggested we took Kaleigh to Moorfield eye hospital where they confirmed double vision but the eye was healthy but suggested we should get further checked out at a general hospital.

We were taken to Royal London, where they carried out a CT scan at 4.30pm, followed by a MRI scan at 9.30pm, with results close to Midnight, when we were told a lump was found in the brain area but weren’t able to elaborate on the information.

We were transferred to Great Ormond Street Hospital at 3.00AM on Sunday 17th of April 2016, where we met with other doctors and they showed us the scans and highlighted the abnormal tissue they had identified. Yang and I were taken to a room to have a further discussion with the consultant at 11AM regarding the abnormal tissue, and advised they would provide a plan of action by Tuesday morning after their multi-disciplinary meeting.

Tuesday 19th April 2016, this was the day our world turned upside down as the consultants confirmed the diagnosis that Kaleigh had developed a condition called DIPG.

At the time, we had little knowledge of what this was except we were told there is currently no known cure and this news was devastating and left us distraught. Yet, as would any parent in our position, we will do everything we can and cling on to any glimmer of hope possible.

Monday 25th April 2016 was the start of the first of 30 scheduled sessions of Radiotherapy which was completed Tuesday 7th June 2016 at University College of London Hospital.

“This was not an easy decision but we brought Kaleigh into this world and we will continue the fight to give Kaleigh what she deserves (a Chance in life)”

CURRENTLY

She has managed to go into school occasionally to see her friends even if it is only for about an hour.

At a recent MRI scan, the tumour reduced by half, this is more or less the predicted effect from the radiotherapy. We hope that the tumour will continue to shrink, although conventional wisdom tells us that we are now in a honeymoon period, and the tumour will grow again and more aggressively.

Outwardly, at the moment Kaleigh displays no symptoms of typical DIPG, and are very thankful for this.

As a family we are trying to enjoy moments together as a family and meeting our friends and going out more, so that Kaleigh has a stronger and more positive outlook. She understands that she is currently unwell, but may not comprehend the gravity of the situation. She is a very smart kid, maybe she knows more than she lets on.

We are also exploring alternative therapies

Traditional Chinese Medicine and a healer in Ireland

The Chinese Doctor we see weekly or twice weekly, and it took us a while to find what we thought was a doctor that understands this illness. Whilst TCM may not be able to provide a cure, it is more about improving her general health and recovering from the effects of radiotherapy. We also understand that the doctor is trying to control the tumour to minimize the effects. This is a costly exercise, but whilst Kaleigh remains relatively healthy, we will pursue this channel of treatment whilst we continue a search for a cure.

All the time we are speaking with medical experts from all over the world, but we understand that UK is probably at the forefront in terms of treatment. Trials are limited, and spaces on these trials are even more limited. Coupled with the timing of trials and the status of the patient, it makes it difficult to execute the next step for Kaleigh.

There is the alternative route of taking the compassionate route (this is where we pay to be on the programme), if there is the possibility of a spot on one of these trials, there are the associated medical costs. Although we don’t have the exact figures, but the treatment will run into tens of thousands of pounds, and this is further compounded if I need to take Kaleigh abroad to seek treatment. At the moment, this next step is unclear and we are always conscious that time is not in our favour. Thankfully, friends have set up a fund and many have contributed to the well-being and treatment for Kaleigh which we are very grateful for. Money is important, but right now our focus is more on finding a trial, a suitable trial for our little girl.

After much research, Kaleigh is going to Monterray, Mexico to be part of pioneering treatment, which seems to show some signs of positive results. It’s far from a cure, but for an illness that has no cure, this is after much research and consideration seems to be the best move.