Hi everyone.

Here is Jack’s story up to date from his mum and dad.

 

About 10 weeks ago Jack started feeling sick in the mornings and as parents we automatically thought it could be a tummy bug or something silly.  His appetite was almost non existent, so every night he was dreading meal times.

We got a phone call from the school one day, telling us that Jack had been sick and that we had to come and pick him up. He was not allowed back for 2 days in case he had a virus. We rested him and on the 3^rd day we sent him back and he seemed fine. The next Monday it happened again and we picked him up and took him to the doctors only to be told it was him playing us about to try and get out of going to school which seemed a bit strange as he loved going to school. Well after explaining this to the school they agreed not to send him home if he kept doing it which did happen on a couple of occasions. Then he started being sick in the evenings and over the weekend which at the time made us think he must be ill.

 

We took him back to the doctors, only to be presented with an anxiety and stress leaflet.

 

 

This went on for nearly six weeks and in the end we took him back to the doctors one last time to insist on some tests to be done because he was also now suffering with excruciating headaches and we knew that this was more than anxiety and physiological problems.  The doctor said “ok, let’s do some blood tests” She gave me a prescription for some cream to numb Jack’s hands before taking blood.  By this time Jack was feeling really sick again.  I took the prescription to the chemist who informed me that they didn’t have the cream in stock and I would have to come back later in the afternoon.  Out of frustration I phoned Jack’s Dad to explain what had just happened and whilst on the phone to him, Jack was being sick in the car park!  It was then that we decided enough is enough and we took him straight to A&E at the Royal Berkshire hospital.  By this time Jack was limp in our arms and was really ill.

 

After a 30 minute wait, we were seen by a nurse who did his observations such as temperature etc, then after another 30 minutes of waiting around, a doctor came to have a talk to us and we told our story of how Jack had been for the last six weeks.  He in turn checked Jack over and couldn’t find anything obvious and was willing to send us home again.  We refused and insisted that we knew our little boy and demanded that he have a scan and blood tests.  They were reluctant to go through with this until we turned the tables on them and asked if they had children and did they know them.  He finally looked at it from our point of view and got the hospital registrar to come and talk to us and examine Jack one more time.  Jack was admitted that evening on Tuesday 26^th May for tests.  The following day, they took Jack’s blood and also did an MRI scan.  Around 1pm on the 27^th May, the ward doctor asked us to join him in a side room to have a chat.  After sitting down, he told us that he had some bad news and that Jack had an enormous brain tumour.  He said he had e-mailed the scans to a top neurosurgeon at the John Radcliffe Hospital in Oxford and was ordered to blue light Jack in an ambulance immediately.

 

 

Once in the ambulance, Jack thought this was great and perked up with the blue lights and sirens on.  When he got to the hospital, he was himself and full of smiles with excitement as they had a massive playroom on the ward.  The neurosurgeon came down to see us and couldn’t believe that this was the little boy who had what he had seen on the scans earlier.  He was planning, initially, to do an emergency operation, thinking that Jack would be on death’s doorstep due to the size of the tumour.  Instead, after seeing Jack at his best and cutest, he decided, to relieve the pressure of fluid build up in his brain first by doing another operation which involved piercing through his brain from the top, down and creating another outlet for the fluid to drain, as the tumour was pushing on the pipe that allows it to drain normally.  This procedure was done on the Friday and was very successful because when Jack came round from the anaesthetic, he said he couldn’t believe that his headache had gone and he didn’t feel sick anymore.

 

The main operation to remove the tumour was booked for Monday 1^st June, and may we say this was the longest day of our lives and not one that we would ever wish on anyone to ever go through.

 

 

Jack was taken down at 8.30am and we were with him right up until the anaesthetist put him to sleep.  At 6.30pm, Jay, the neurosurgeon, came down to see us and gave us the news that he thought that he had removed all of the tumour and that Jack had come round and announced that he felt sick, then did so all over the anaesthetist!  What a weight off our shoulders.  Even though the operation was successful, some slight damage to Jack’s brain had been caused which was explained to us from the outset.  Jack’s left side doesn’t work as well as it should, i.e. his arm, leg and left eye have been affected but in time, these will recover with some physiotherapy and encouragement from us.

 

Jack was transferred back to Reading Hospital this Wednesday and we were under the impression it was going to be an overnight stay but was informed on Thursday that we would have to stay in over the weekend even though Oxford had told us we would be home by then.  After questioning the doctors as to why they were keeping us in, their excuse was that both myself and Jack’s dad needed some rest after the rollercoaster that we had been through.  The rest that we needed and insisted on was to be back home and as a family.  Jack had had enough of hospitals and missed his dog Bella.  His dad had decorated his bedroom as a treat for being so brave and he was dying to see it.  We left Reading hospital on Thursday at 4.30pm to come home and be a family once again.

 

Jack is doing so well now, his appetite is enormous, mainly for junk food, i.e. chocolate, MacDonald’s and ice creams, but we have managed to incorporate these into healthy eating as treats.  His walking is coming on in leaps and bounds and each day he gets stronger and makes us proud.  His left arm and hand still need a lot of work but when we tell him to use it, he really tries hard and is able to lift his arm and grip things with his hand.  His left eye muscles are not working as they should which causes a slight squint at times, making him see double.  He has been given some glasses which have a prism stuck to the lense which takes away the double vision.  However, his vision is perfect in both eyes and the muscles will recover in time.

 

 

Jack has a long way to go yet before he is fully recovered.  He is booked in for six weeks of radiotherapy, everyday for five days a week which will take every ounce of strength out of him and probably make him very ill.  During this time he will also have one day a week of Chemotherapy.  After this course of treatment, Jack will have a break of about six weeks and then will be put on a course of chemotherapy approx 48 weeks.

 

When we found out about this tumour, it knocked us for six!

After consultations with the Oncologist, we now know that the tumour being removed was just the start of our war against this nightmare but we have been given an average of 70% chance of a cure.

 

We hope this has been informative for you and we apologise for not updating you on a more regular basis, but as you must understand our time has been taken up with Jack, giving him as much encouragement and strength he needs from us.

 

Please keep your support coming in with messages, as this has been a great help in Jack’s rehabilitation and it also gives us something to have a giggle at and lifts our spirits when we’re feeling a bit down.  We will keep you informed of Jack’s progress as and when possible.

 

Regards,

Allan and Helen x