However, something wasn’t quite right on Thursday 14th of April 2016 as 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 myself 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 is due to be completed by Tuesday 7th June 2016 at University College of London Hospital. Kaleigh is currently doing very well with her radiotherapy and she has managed to go into school occasionally to see her friends even if it is only for about an hour.
We are currently travelling into hospital everyday apart from weekends and bank holidays, which has been tough of the whole family. This is where we are thankful for the support of family and friends, as this have given us the strength to keep going.
We are thankful for all your support, lots of love,
Scott, Yang, Kaleigh and Carson.