The Journey so far.....

Monday 28th April 2008, unbeknown to us, this was the day our lives would changes forever.

Adam had been complaining off and on for a few weeks of headaches, various times of the day and the medicines we were giving him seemed to have very little impact. Having had Adam at the doctor 3 times and having blood samples taken, we were no further forward. The last time we saw the GP she was sending a referal to the outpatients clinic for further investigations.

On Sunday 27th April, we had a birthday tea for Marc, who was 8, and my Auntie noticed that Adam was a little unsteady on his feet along with low tolerance for noise and light. Monday morning came and I decided that enough was enough. I took him to the Sick Kids Hospital to A&E. I had decided that it would be better to get things checked out by them. If I was over reacting then I would happily accept a slapped wrist for wasting their time. I wish now that it had been so simple.

After a full physical examination, the doctor there could find nothing that my GP had missed, I started to feel like I had over reacted. She then suggested doing an MRI scan just as a precaution and if nothing showed they would treat him with migraine. I remember sitting thinking at the time "God . I hope he doesn't have migraine" as a sufferer I wouldn't want that for him.

The MRI was arranged very quickly and within 2 hours he was being scanned. The scan which was supposed to last 20 minutes actually lasted and hour and a half! Adam was brilliant, he just lay watching Tom and Jerry on TV while wearing a cool mask like a stormtrooper from Star Wars!

The results in, the doctor came to discuss things with me, to cut a long story short, I phone Spike to come up to hospital and arranged for Granny to pick other boys up from school. Adam was admitted to Ward 1 and we were given the devastating news that our son had a brain tumour. Now I wished he had migraines.

We were told that the tumour was causing pressure and that was causing his headaches. They quickly started him on a course of steroids to reduce the swelling and thus stop the headaches.

I stayed over at hospital with him while Spike had to come home and care for the other 3 boys and try to digest the news we had been given. It was very difficult being apart from each other at this time but it gave us both time to take in the situation and what it would mean for us as a family.

Tuesday 29th April, this was when we discovered the full extent of the situation and I have to say, that almost 3 weeks on, it still seems surreal. Adam has a brain stem tumour (pontine glioma to give it it's official name) there are only 40 children a year in the UK diagnosed with this type of tumour. Due to the location of the tumour it is inoperable and far to dangerous to even take a biopsy as the brain stem is the part of the brain that joins with the spinal system and the main control area for many day to day functions like breathing and swallowing.

His prognosis is not very good, but better with treatment. He starts radiotherapy and chemotherapy capsules combined on Monday 19th May for 6 long weeks. In preperation for this he has had a mask made for radiotherapy - this is to hold his head completely still while receiving the radiation lasers, he had had a central line put in his chest for anesthetics and to allow bloods to be taken, he has also had a feeding peg (button) inserted into his tummy - to allow medicines and any additional liquid feeds he made need in due course. So to date we are all geared up for Monday to get things moving.