Signs & Symptoms
Given William’s age at the time and having recently started nursery, the assumption that William was just going through the standard run of sickness and teething was made by both ourselves and our local GP service. As well as the more common symptoms (see headsmart.org.uk) we noticed William walking around with his head tilted to one side.
After repeated visits to the GP William was eventually referred to Eye, Ear, Nose & Throat (EENT) although, thanks to his mother’s conviction that there was more going on, we decided to take William to the local Accident & Emergency department after William was sick one night, again for no apparent reason.
After a few days in the hospital of continuing to try and persuade everyone who would listen that there was something more seriously wrong with William than some form of infection we eventually managed to persuade them to carry out an MRI scan once the EENT department could find nothing wrong with him.
It was then that we received the utterly devastating news that William had a tumour approximately size of a golf ball near to the centre of his brain. In the next few days the tumour was diagnosed as a Grade 3 Anaplastic Ependymoma of the Fourth Ventricle.
Within days William was taken into surgery and thanks to the brilliant work of a surgeon at Queens Medical Centre, Nottingham, the tumour was removed. Due to the location of the tumour and its proximity to critical nerves William was left with partial paralysis to the left hand side of his face which meant that in addition to not being able to move the side of his face, he had to be tube fed due to not being able to properly swallow.
Although it was removed, the grade of cancer the tumour was found to be meant that there was a significant chance that it would likely come back so further treatment was required. Within days William started a 13 month course of chemotherapy, devised by a renowned specialist in the type of cancer William was found to have, involving four main drugs administered every two weeks, each involving various lengths of hospital stays.
Unfortunately William was not able to sustain his tolerance of this treatment and coupled with the fact that he was found to be deaf in his left side (likely due from the surgery) and began to loose high tone hearing in his right side (likely due to the chemotherapy) the decision was made to stop treatment after 9 months.
After a few weeks we were able to remove the feeding tube and the central line that was fitted for administration of the chemotherapy drugs. William’s hair grew back and he returned to nursery although the surgery/ chemo had left him deaf in one ear whist the other ear suffered high tone hearing loss.
In the months preceeding August of 2015 after several clear scans we began to notice a deterioration in William’s balance. Although he had been unsteady on his feet since the first operation we decided to take him to his GP where we were told the same story of a possible ear infection. After speaking to his oncology consultant his next scan was brought forward and the tumour was found to have re-grown.
Due to where the tumour was found this time we were told that the operation would be more complicated than the first. Having initially been told by the surgeon that he thought half of it had been removed, the scan showed that in fact he had removed most of it. Our joy was tempered by the fact that William could not be extubated (taken off ventilation) since his cough had been compromised by the surgery. After a week on heavy sedation in intensive care he had to have a tracheostomy fitted before he could be weaned off the sedation and we could find out what other complications the surgery had left him with.
Fight for Proton Beam
To our then delight we were told that William would be considered for Proton Beam Therapy in America (a less damaging form of radiotherapy than that offered in the UK). Although the NHS approved funding, it was a week and a half after William had made remarkable progress in being weaned off of the sedation when we were told that the centre in America had refused to treat him due to the fact that he had a tracheostomy and the complications that would likely result from travelling by air to America.
Although we tried everything in our power to get Proton Beam Therapy in Europe (the NHS only had agreements with America), including the intervention of our MP (after an unbelievably well supported petition for his involvement), a MRI scan showed that in the month since the surgery the tumour had grown to become larger than it was prior to the surgery. We then had no other option than to settle for radiotherapy in the UK since starting treatment sooner was more important than the type of radiotherapy given the rate the tumour had grown back at.
In October 2015 William stated a 6 week course of Radiotherapy at City Hospital using the Tomotherapy machine which is better able to direct treatment to the tumour than with a conventional radiotherapy machine. We were warned from the start that there was a significant chance that the side effects of the radiotherapy may mean gaps in his treatment. Although sickness was a constant issue, an adaptive mix of medications meant that it did not result in any delays to his treatment. The only delays we encountered were at the start and end of treatment – these were due to mechanical issues with the machine.
End of NHS Options
In early 2016 the tumour was found to be increasing in size and despite going through another round of chemotherapy it’s growth has not stopped. We were told that there were no other treatment options available although they said that William’s tumour had the correct enzymatic profile for the Ketogenic Diet to possibly have an effect.
At this point we decided to seek treatments outside of the NHS and came across Cannabidiol (CBD) and a private clinic which was able to offer a synthetic version. We also started William on a Ketogenic Diet.
Six months after being told there was nothing more that could be done for William, as opposed to noticing a continuing deterioration, we noticed an improvement in his condition. Once we suggested this to his clinician the decision was quickly made to carry out a MRI scan whereupon his tumour was found to have shrunk by well over half – pretty much two thirds.
After Christmas in early 2017 William had improved to the point whereby the specialists thought it would be appropriate for his tracheostomy to be removed. It would probably even be possible to remove the feeding tube to his stomach if it were not for the fact that it would not otherwise be possible to keep him as strictly adherent to the Ketogenic Diet without it.
Since the six month scan we have continued to receive support from the NHS and Matthews Friends with regard to the Ketogenic Diet and to privately fund the CBD and so far, although we still believe we are tempting fate by saying it, William’s tumour is stable, i.e. it has not grown.
We are painfully aware of how indescribably cruel this disease can be and are under no illusions as to how quickly we could be brought back down to one of numerous lows we have experienced over the last few years. However, despite how hard it is sharing our story, if even one family can gain just a few months extra with their child by following our example, we believe it is worth it.
Furthermore, since hope is the only thing that has kept us going, we are ever hopeful that what we are doing has effected William tumour size and as such are doing all we can a) to spread the news of William’s progress and b) to fund research into alternative treatments so that at least another avenue of hope may be offered to families in our condition.