Jack’s Journey to epilepsy brain surgery
One morning at the age of six, Jack was tearful and complaining of a headache. I decided to keep him off school and within the next couple of hours Jack was having his first, full tonic clonic seizure. His torso and limbs were rigid and shaking, his eyes rolled back in his head and his breathing was erratic, I was shocked and scared, what on earth was happening to my little boy?
He was swiftly admitted to the local hospital and underwent many tests, including a very painful lumber puncture to test for meningitis. Jack had further seizures that day and we were questioned within an inch of our lives, “Had he drank bleach or any other chemicals, had he had a fall or banged his head? Fell down the stairs? Had an accident of some kind?” “No” we repeated over and over again…
Further tonic clonic’s presented and when they came, a crowd of doctors and nurses would descend on us and surround Jack, but to my despair no one tried to stop them. They wanted to ‘see’ how long it would last. My worst time was when he was still seizing at nine minutes, I was tearfully screaming at them to make it stop. Eventually, the doctor injected Phenytoin and the seizure subsided and my boy was finally relaxed, peaceful and sleeping.
Many more scans and tests followed after which a diagnosis of epilepsy was given. Jack had some ‘scaring’ on the right frontal lobe, which ‘may’ be the problem. The doctors concluded this had occurred during the first trimester of pregnancy during foetal development. Jack was administered a low dose of Carbamazepine and this was enough to make him ‘stable’ for nearly five years.
Unfortunately, at the age of 11 a different type of seizure started to present itself. One I had no experience of, - or even knew existed. Jack had episodes lasting approx. 30 seconds where he would behave ‘oddly’, symptoms included rapid jumping up and down, hollow laughing, rocking vigorously, frantic hand and leg movements, and, most worryingly during nocturnal episodes he would suddenly sit up and repeatedly throw himself backwards into his pillow very physically, risking banging his head or falling out.
Over the next two years we were constantly adding new drugs, including Epilim and Keppra, at various doses to try to control his seizures, unfortunately nothing helped and over time his seizures became more frequent. This made life for the three of us (me, Jack and Jamie – his older brother) very difficult, I was too scared to let him go out alone, I couldn’t bear the thought of him crossing a road or being on his bike. He couldn’t even have a bath without me being close by. I stopped taking them swimming and Jack was also having a lot of time off school. Fortunately, I am self-employed so I could work part time around his seizures when I could but I wouldn’t have been able to hold down a ‘normal’ full time job.
Finally, in 2015 a referral to Great Ormond Street Hospital seemed like a godsend, we travelled there often and had precise MRI scans and a five-day monitored EEG test. At the consultation it was decided that Jack might benefit from a frontal lesionectomy of his brain. This was a very scary prospect but on the other hand, at least they thought they ‘could’ help. If the scans showed the area was in a different place or too close to his motor or vocal functions the surgeons wouldn’t risk it.
That brings us up to December 2016, we have been given the surgery date as Thursday 26 January 2017. My partner suggested putting a ‘positive spin’ on the brain surgery, so instead of it being a scary and daunting experience to dread we turned it into a fun way for friends and family to show their support for Jack and of course to raise awareness of epilepsy.
Jack created a Facebook page called “Jack’s Journey” with a brief description of his story and a link to the Just Giving/ Young Epilepsy fundraising page. Jack decided to make some badges supporting his page and Young Epilepsy so his followers could buy one, wear it on surgery day and post photos of themselves wearing them so when Jack was well enough he could see all the photos and messages.
This idea was a huge hit, so many people wanted to show their support on the day of surgery and we had friends and family dying their hair and beards, wearing lots of purple, painting nails, dressing up dogs and generally having fun with it. This was fantastic way to support Jack (and me & Jamie) and it was a great way to keep everyone updated on Jacks progress. Jack made £123.00 profit from the badges and with other donations, the JustGiving page has reached £327.75. In total, since Jack was first diagnosed, we have raised over £2,000 for the charity.
One of Jack’s biggest passions is Lego Technic, and building it is a great way of helping the brain recover and assist with his fine motor skills. Just before surgery there was a surprise party where a local group we belong to called ‘Norfolk Overland Explorers’ had a collection and generously raised enough money to buy Jack two big Lego Technic kits and even a small gift for Jamie and myself.
Jack went for his pre-op at GOSH on Wednesday 25 January, after which I had arranged a VIP tour of the big Lego shop in Leicester Square as a treat. We were all set for surgery now, and there was no going back. Jack was very emotional that night and experienced a seizure at 4am. A thought did cross my mind ‘this might be the last seizure Jack has’.
He was called for surgery at 12pm and his dad and I were with him while he fell asleep. Waiting for the phone call after surgery was a long and agonising time, but finally at 6.30pm we were able to see him in recovery. It wasn’t easy… there were tubes and wires and drains attached to him at every available joint. He was sleepy and didn’t open his eyes properly for 24 hours. He was able to use a ‘thumbs up’ signal and could tell the nurses his name, date of birth and where he was. Surgery had gone well with no complications; we were told the surgeon removed a piece of brain the equivalent size of a satsuma!
Within 24 hours various attached paraphernalia was gradually removed and although he was still on the high dependency ward, gradually Jack became more alert. On Saturday, he was given his own room and he was able to get dressed and take a few steps out of bed. He wasn’t in any pain and was smiling as much as he ever did – even though it was slightly lopsided.
To our absolute amazement, when the ward doctor came round on Sunday morning she said she thought Jack was well enough to go home! The duty surgeon confirmed this and before we knew it Jack was back at home by 6pm! Less than three full days after surgery!
On the Monday, Jack had already started one of his Lego sets and would do a bit, then rest, then do a bit more.
Jack has been incredibly brave and resilient. He’s taken every step in his stride and remained positive and happy and undaunted all the way through. I am incredibly proud of him and his brother, but I know having such a great support network around us has helped tremendously.
It’s still early days but the signs are good, he hasn’t had a seizure yet, but we won’t know if surgery has worked for many months yet.
We are thankful that he has been given a chance and we are looking forward to a brighter new life of freedom and adventure for Jack.