Saturday, April 05, 2008

After our fantastic trip to Lapland, sadly, the next day, Christopher ended up back in the hospital with a blocked shunt and from then until Christmas he was in and out of hospital with shunt problems.

We finally managed to get home on the afternoon of Christmas Eve. With the help of family and friends I'd managed to do the Christmas shopping so was fairly organised.

Christmas day was lovely and although Christopher wasn't well he seemed to enjoy the day. There is a picture below of him playing with Katherine Christmas day afternoon.

Boxing day was a different story and in the afternoon I dashed back to the hospital with him as he wasn't well at all. I remember having to stop my car on the hard shoulder of the M6 to hold a bowl for Christopher to be sick in. Poor little mite.

Because of the continuing problems with the shunt blocking, the surgeon decided to modify a shunt to try to avoid any further blockages and to enable us to get home for Christmas they had to insert a needle into one of the many holes in Christopher's head and draw some fluid off to try to keep the pressure down - this did the trick but then it seemed the poor little chap was suffering from low pressure and the effects were quite similar to too much pressure but not as serious. He was feeling tired, very strange and sick.

The fluid that was drawn off was sent off for analysis and when the results came back it was discovered that there were cancer cells floating about. To be honest that didn't surprise me at all given his condition and although the cells were dead ones there was some talk at the time of whether they needed to give Christopher some chemotherapy into his spine as obviously the brain and spine fluid are one and the same and there was a change of the cells settling in his spine and spreading. Anyway for whatever reason they decided against doing this.

January saw the start of radiotherapy. We were told that we had to be at the Queen Elizabeth hospital at 8am 5 days a week for the treatment and the reason we had to be there so early was because each morning Christopher had to have a general anaesthetic (GA). The reason for the daily GA was because radiotherapy on the brain is very dangerous and had to be done in exactly the right place and it was too much and too scary to expect a 3 year old boy to keep perfectly still for the treatment. Especially as he had to wear a plastic mask that came in two halves - one fitted on the front of his head covering his face and the other half on the back - a bit like the man in the iron mask. The reason for the mask was that they could mark it to show where to point the radiowaves.

I didn't know how we were going to manage to do a 70 mile round trip every single day from home and get there so early and it was then that someone suggested contacting Edward House to see if they could accommodate us. They said yes and for the next 6 weeks that was our home from Monday to Friday and we would travel home on Friday afternoon and return Sunday evening.

The radiotherapy went well and even though Christoper had a GA every day he coped really well with it. He was a bit miserable sometimes when he came round but we used to have a nice treat ready for him when he woke up, although by this time he had a feeding tube as his appetite was almost zero as all the treatment had taken it's toll on him.

I used to give him his 'feed' each night while he slept but due to the fact he was having a GA every day I had to set my alarm to wake up to turn off the feed at around 2am every morning so that his tummy was empty for the anaesthetic.

Wednesday, April 02, 2008

One fantastic thing that we did get to do in between hospital stays and surgeries was to go on a trip with the charity 'When You Wish Upon a Star' and on 19th December 2001, after lots of prayers and near-misses, we went to Lapland for the day!

It was a very exiciting time as none of us had ever even been on an plane before and we all had to apply for passports!

Unusually the charity paid for all 5 of us to go, normally it's just for one parent and the sick child, but they said due to our circumstances and how ill Christopher was they would pay for us all to go which was wonderful as I really don't think I could have gone and left Katherine and Matthew at home on such a special day out.

My Mum also desparately wanted to go so she made a donation to the charity to cover the cost of her place and she came with us!

We set off very early in the morning and as an added surprise - Jeremy Spake from the BBC TV series 'Airport' came with us and also the Pop Idol winners 'Hear'say'. Katherine was so very excited as we'd followed the Pop Idol series on the TV and she couldn't believe that she got to meet them in the flesh!

It was a very long but very magical day, we all got to meet the 'real' santa and it's something we'll never forget.

Brave boy

Brave boy