I would like to thank you all for stopping and reading this. Our son was diagnosed with a Pilocystic Astrocytoma brain tumour in November At the age of 3, after almost 2 years of being told he had viruses when he was taken to A & E in unconsolable pain, he has since had the tumour removed and a few complications afterwards resulting in a further 3 operations and having a shunt fitted, a total of 4 operations in 4 weeks. Although he is making a good recovery at home he has a problem with lying flat, eating, anxiety, sleeping and is still very wobbly on his feet, the problem with not being able to lie flat gives him severe headaches and vomiting. We currently have his bed propped up with pillows under his mattress to raise his head, and more pillows on the top of his bed, it works well enough but we would like to try and raise some money to put towards buying him an adjustable bed so we can keep his head raised in a safer and more comfortable way.

Konnor-Craig McKenzie Story

Konnor-Craig James Mckenzie was born on 22nd July,2014, 10 weeks pre term, after spending 4 weeks in SCBU, he was discharged home.

He was a thriving baby with no concerns, over achieving all his mile stones.

When Kc was about 1 year old he had a seizure in his cot, his dad took him to Ninewells Hospital where they said was was probably a febrile seizure, cause by a high temperature and because a baby cant regulate their body temperature this can sometimes cause them to do this.

Kc was still thriving up until about May 2016, he started holding his head back and screaming uncontrollably in pain then vomiting, at first we thought he had been sleeping funny and maybe pulled a muscle in his neck as it was first thing in the morning he started doing this. This happened on a couple of occasions then stopped, we thought yes he must have pulled a muscle or something, but 2 weeks later it started again, this time in the middle of the afternoon while Kc was sitting quietly playing with his toys, he suddenly threw his head back and screamed and screamed uncontrollably. This went on for about 20 mins and kc was also vomiting, I called an ambulance and was taken to Ninewells Hospital, where Kc was for several hours and told he was ok and to give him Calpol, the next day the same happened and we took him to Ninewells hospital and after a long wait yet again told there is nothing wrong and give him calpol. Kc was then taken to see his local GP who couldn’t see anything wrong with him. Over the next couple of months Kc kept having these attacks and a couple of times taken to hospital and sent home and told to take calpol.

In October, 2017 KC was again taken to see the local GP, this time he was reffered to a specialist at ninewells hospital, within a few days he had an appointment to see a specialist, at the appointment the specialist wanted to get a CT scan done this was arranged for the following Friday. We went to get the CT scan done but KC was petrified and wouldn’t lie down so this was rescheduled to be done the following Friday under a general anaesthetic.

KC’s CT scan was done and the finding was a Rotatoty Sublaxation C1/C2. The specialist wanted to refer KC to a specialist at Glasgow Sick Childrens Hospital, a day patient appointment was arranged for 3 days time on Monday the 6th November, 2017.

On Monday 6th November, 2017, we arrived at Glasgow Sick Childrens Hospital, they decided to admit Kc to hospital for an MRI scan under general anaesthetic, he was put on the emergency list for this however this didnt happen until Thursday 9th November.

The results of KC MRI were shocking, this showed that KC had a Brain tumour in his cellabellum, this needed surgery to remove it and this was planned for Tuesday the 14th November.

KC was in surgery for 10 and a half hours then transferred to intensive care for 23 hours, his neurosurgeon said that surgery went well, he then spend 2 days in High dependency before returning to the ward. He was discharged from hospital on the 22nd November, to return to Dundee. Tests showed that the tumour that was removed was a Pilocytic Astrocytoma.

(Pilocytic Astrocytoma- This is a rare grade 1 tumour mostly effecting 5-14 year olds, they typically stays in the area they started and does not spread.)

On the 29th November kc started leaking brain fluid from his head, on contacting the local A&E department and speaking to a doctor there, they were told that they couldn;t do anything and to take KC back to Glasgow. With KC in the condition he was in we were concerned about an almost 2 hour journey in the car, so we contacted our contact at Glasgoe sick Childrens Hospital who told us to present ourselves at our local A&E department and they will have to arrange to get us to Glasgow, on doing this we saw a doctor at the local A&E who asked “what are your expectations of me”, my husband replied get my son an ambulance to Glasgow. The doctor went away and returned to say that KC would be seen by the neurologist and that they could deal with his condition, when the neurologist did see KC he instructed the doctor to get an ambulance arranged and get him to Glasgow. Finally 4 and a half hours later the ambulance arrived and transported KC to Glasgow.

Once back at Glasgow KC was taken for a CT scan and operated on later in the morning to remove fluid from his head, a few days later we were discharged to return back home to Dundee.

8 days later fluid started leaking out of Kc’s head again, again an ambulance journey to Glasgow, where the next day kc was fitted with an external head drain and put on a drip to replace his lost fluids. Later that week he was fitted with a shunt to help drain the fluid into his stomach. The surgery went well but kc had problems coming out the anaesthetic, he was taken to high dependency where he stablized.

Finally just before christmas was got Kc back home again, things seemed to be going well until 4am on the 23rd Dec, kc woke up screaming in agony with a headache and started vomiting, we took him straight to hospital where he was in for observation until 0730 christmas morning when he was discharged, He was very quiet all Christmas Day and went to bed around 7pm, at 9pm he woke up screaming, he was lying flat in his bed we tried to move him and he started screaming hysterically, he was asking his dad to cut the bed because he was stuck. We called an ambulance and he was taken to hospital, he was vomiting and screaming all the way to the hospital. Once in hospital he was kept in for observation again, we came to the conclusion that when he lies flat he gets a severe headache and starts vomiting due to the pressure in his head.

Thankfully to date we have been at home and no more hospital stays, we have seen a neurologist in Dundee that said that Kc tumour was 4 and a half cm, he was born with it and the tumour was pressing kc’s brain down his spine, this was very disturbing for us to hear. Our poor little boy was still smiling and such a fighter throughout all this.