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Noah has high functioning ASD and he contracted covid in June 2022
It was the usual sore throat headaches and tiredness loss of appetite nothing out of the normal and recovered well after a few days. A few weeks later his appetite was still decreased and I rang his GP and was told it was long covid and to give him plenty of fluids that he would eat when he was ready.
The summer passed and his appetite still wasn’t great but was eating small amounts but had weight loss went back to school in September still feeling under the weather, but was complaining of headaches here and there, still losing weight we were more concerned about weight loss and not eating.
In October we had an appointment with his paediatrician in Wexford where I expressed concerns about vomiting and not eating. We taught this maybe a silent reflux so he was put on medication to help. In November Noah was still sick so I brought him to A&E and was told that he had sensory issues to noise and that I was to get ear defenders. At this stage the headaches and vomiting had gotten a lot worse. Christmas came and went with the same issues collecting him from school wondering if he had a vomiting bug wondering what was going on with him and wondering if we were losing our minds. In January this year I brought Noah back again to the GP still expressing concerns about weight loss vomiting headaches he was referred back to his paediatrician. Noah has a squint in his eye so I rang ophthalmology in Waterford, we had an appointment on the 30th of January, a day that changed our lives for ever.
There was a fluid build-up at the back of Noah’s eyes putting pressure on his eyes so we were admitted for a CT scan. The scan was done that day and we were told there was a tumour on the 4th ventricle of his brain from there we were rushed to temple street. An MRI scan confirmed the tumour.
On Wednesday the 1st February he had a evd drain placed to release the extra fluid on his brain where Noah told us the next day that the winey noise was gone out of his head. The tumour was removed on Friday the 3rd of February. Later that night we were told that it was a “Medulloblastoma grade 4” and it was cancerous. The full tumour was removed and that we needed to travel to Essen in Germany for Proton treatment.
A few days after the tumour was removed Noah needed a shunt fitted because the ventricle was badly scared from where the tumour was and the fluid couldn’t drain by its self. While Noah was recovering he asked us what the doctors did with his old head as he knew head felt so much better, that broke our hearts because he must have been in so much pain.
Kids with ASD have a higher pain threshold to us so he was able to mask his pain better. At present we are into a fourth week of proton treatment in Germany and on the countdown to getting home. Once we return home to Ireland Noah will then have chemo for 8 sessions over 36 weeks.
With the help of Temple Street and The Gavin Glynn Foundation I don’t know where we would be today, probably still arguing with doctors to listen to us.
The Gavin Glynn Foundation has done so much for our family we will be forever grateful and will never be able to repay them for their help and kindness through the darkest days of our lives.
