Childhood Cancer

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.

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.

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.

Kaleigh in Mexico.

Even up till recently, a second round of radiotherapy was not always considered a route, but it is now a more common approach in the fight against DIPG. But after the treatment, and a further MRI, Kaleigh was still considered unsuitable for CED by the leading Doctors, professors and consultants in this field. Within the UK, no further options are left now that CED is no longer a viable option.

Team Kaleigh had placed the focus on the CED procedure for much of the last 6 months, and fund raising efforts were always targeting the CED route, even this was never clear until early 2017.

We always had an eye on other developments happening around the world, France, Germany, USA, Australia to name but a few. We were left with seeking opportunities abroad, but this brings a whole new level of finance required.

Whilst in the UK, Yang took to full time caring for Kaleigh and Carson, and the main costs would be the hospital treatment and the TCM. This was already anticipated to be a sum in excess of GBP200,000.

But, after much research Kaleigh is going to Mexico, Monterray to be part of some pioneering treatment, that 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.

“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)”

“To Kaleigh, she is  going to Mexico for a family holiday with visits to the doctors to have scans to help with the little lump”.

“This may seem like a knee jerk reaction to some, but people that know me understand i put everything into perspective then make an informed decision based on what i have and what we as a family believe is right. Unfortunately on this occasion i am flying by my pants a bit, as there are still many risks and still many unknowns, but what have we got to lose.”

Both Scott and Yang have stopped working to take care of Kaleigh, and they are taking Carson with them to Mexico for a few months to continue her treatment.

This is costly exercise, without NHS backing, this is completely self funded, financially things are getting tight.

We understand the treatment will be every 3 weeks at a cost of circa US$20,000 (£16,000) a course and of 10 to 15 courses are anticipated. Needless to say, travel, accommodation, food, and other costs will add to the total expenditure.

We really are not sure of how long Kaleigh will need to be out there for but would appreciate any help you can give.

Yang and Scott will no longer be working for a period of time and if you can think of any fundraising ideas or know someone wealthy and would like to sponsor us in any shape or form we would be very grateful of that.

We will update the fundraiser page and associated websites as and when we can.  Support Kaleigh and support the petitions that are pushing for research into a cure for this illness.

May is DIPG Brain Cancer Awareness Month. DIPG is an inoperable rare tumor located in the middle of the brain stem that only affects children. Recently families from all over the world have come to Monterrey, Mexico to get treated.

Both Scott and Yang have stopped working to take care of Kaleigh, and they are taking Carson with them to Mexico for a few months to continue her treatment.

This is costly exercise, without NHS backing, this is completely self funded, financially things are getting tight.

We understand the treatment will be every 3 weeks at a cost of circa US$20,000 (£16,000) a course and of 10 to 15 courses are anticipated. Needless to say, travel, accommodation, food, and other costs will add to the total expenditure.

We really are not sure of how long Kaleigh will need to be out there for but would appreciate any help you can give.

Yang and Scott will no longer be working for a period of time and if you can think of any fundraising ideas or know someone wealthy and would like to sponsor us in any shape or form we would be very grateful of that.

We will update the fundraiser page and associated websites as and when we can.  Support Kaleigh and support the petitions that are pushing for research into a cure for this illness.