Kaleigh during her battle, managed to go into school occasionally to see her friends even if it is only for about an hour.
After one of the MRI scans, the tumour reduced by half, which was more or less the predicted effect from the radiotherapy. We had hoped that the tumour continued to shrink, although conventional wisdom told us that we were in a “honeymoon” period, and the tumour would eventually grow again and in a more aggressive manner.
During this period, Kaleigh displayed no symptoms typical of DIPG, and we were very thankful for this.
As a family, we tried to enjoy moments together such as meeting our friends and going out more, so that Kaleigh would have a stronger and more positive outlook. She understood that she was unwell, but may have not comprehended the gravity of the situation. She was a very smart kid, and maybe she knew more than she let on.
At the same time as the radiotherapy sessions, we also explored 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 was the alternative path 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 didn’t have the exact figures, the treatment ran into tens of thousands of pounds, and this is further compounded if we need to take Kaleigh abroad to seek treatment.
After much research, Kaleigh went to Monterray, Mexico to be part of pioneering treatment, which seemed to show some signs of positive results. It was far from a cure, but for an illness that has no cure, this was, after much research and consideration, seemed to be the best move. After numerous trips and various treatments, we are sad to say that in the end, is was unsuccessful. Yet, we believe with more research, there will be a cure one day so no other parents will have to make funeral arrangements for their child because of DIPG.