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.