Brain Tumour Awareness

Konnor-Craig McKenzie Story

Konnor-Craig James Mckenzie was born on the 22nd of July, 2014, 10 weeks pre-term and after spending four 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 one year old he had a seizure in his cot, his dad took him to Ninewells Hospital where they said it was probably a febrile seizure, cause by a high temperature and because a baby can't 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 when 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 two 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 I was 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 on several occasions 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 referred to a specialist at Ninewells Hospital. At the appointment, the specialist wanted to get a CT scan done and 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 rotatory sublaxation C1/C2. The specialist wanted to refer Kc to a specialist at Glasgow Sick Children's Hospital. A day patient appointment was arranged for three days time on Monday, the 6th November, 2017.

On Monday 6th of November 2017, we arrived at Glasgow Sick Children's Hospital, where 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 didn't happen until Thursday the 9th of November.

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

Kc was in surgery for ten and a half hours then transferred to intensive care for 23 hours. His neurosurgeon said that surgery went well. He then spend two 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 do not spread.)

On the 29th of November Kc started leaking brain fluid from his head. On contacting the local A&E department and speaking to a doctor there, we 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 two-hour journey in the car, so we contacted our contact at Glasgow Sick Children's Hospital who told us to present ourselves at our local A&E department where 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 four 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.

Eight days later fluid started leaking out of Kc’s head again. Again an ambulance journey was taken 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 stabilized.

Finally just before Christmas, we got Kc back home again. Things seemed to be going well until 4am on the 23rd of December, 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 07:30 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 four and a half cm and he was born with it. 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.

We're raising £1,000 to to buy our son a reclining bed after his brain tumour removal, and to take him to Nickelodeon World in the summer to meet Paw Patrol.

https://www.justgiving.com/crowdfunding/kcmckenzie?utm_id=125

March is Brain Tumour Awareness Month. I have listed symptoms to look out for, please SHARE and SHARE. Let’s get these symptoms to everyone.

Babies under 5

• Persistent/recurrent vomiting
• Balance/co-ordination/walking problems
• Abnormal eye movements or suspected vision loss
• Behaviour change particularly lethargy
• Fits and seizures (not with fever)
• Abnormal head position such as wet neck, head tilt or stiff neck
• Increasing head circumference (crossing ventures)

If your child has ONE of these, see your doctor, if TWO or MORE ask for an URGENT referral.

Children 5-11

• Persistent /recurrent headache
• Persistent/recurrent vomiting
• Balance/co-ordination/walking problems
• Abnormal eye movements
• Blurred or double vision/loss of vision
• Behaviour change
• Fits and seizures
• Abnormal head position such as wry mech, head tilt or stiff neck

If your child has ONE of these, see your doctor, if TWO or MORE ask for an URGENT referral.

12-18 years

• Persistent /recurrent headache
• Persistent/recurrent vomiting
• Balance/co-ordination/walking problems
• Abnormal eye movements
• Blurred or double vision/loss of vision
• Behaviour change
• Fits and seizures
• Delayed or arrested puberty

If your child has ONE of these, see your doctor, if TWO or MORE ask for an URGENT referral.

Earlier diagnosed of brain tumours can save lives.

We were lucky enough to get Kc’s diagnosed before he got to much of a serious condition, but not without a fight with doctors and it took a long time and a lot of misdiagnoses. We didn’t know the symptoms of brain tumours at that time. Please make sure you know the symptoms it could potentially save someone’s life.

Please don’t let anyone else go through what our son did.