Right, now that I have updated about treatment I thought it would be nice to share a liitle of what we have been up to as a family.
Thomas and his big sister have been nattering for ages about going camping, so a couple of weeks ago we decided to go for it and take the kids on their first camping trip. We were all mega excited, it has to be said that we didn't exactly rough it, we had electric hook up but in our defence we needed it as Thomas has alot of medication so we needed to be able to sterilise and he was having his retinoic acid so we had yoghurts to keep cold. Also Thomas can't have tap water until it's been boiled and cooled. So not having electric wasn't an option.
The kids absolutley loved the whole camping experience. they were so excited to be going sleep all kids together, on the first night there was alot of whispering and gigging and falling between airbeds, all good fun.
It was nice to chill as a family, Rich 's mum and dad came too which was great, the kids adore them and it is always good having two extra pairs of hands. We are so lucky with our families, both sets of grandparents are amazing as are the aunties and uncles.I wonder how we would have got through this last 8 months without them.

We enjoyed a lovely day at Weston Super Mare where we got completely soaked but not before we'd been on the big wheel and checked out the new pier.Thomas was thrilled to get an ice cream too, he isn't allowed whippy ice cream so we spend alot of time saying no to ice cream but we found a nice place that did scoopy ice cream, yummy!  We spent a day close to the campsite and then another day we took the kids on the west somerset railway on a steam train. It was lovely having time away from hosptial, work and  all the things that need our attention at home so that we could really enjoy being together.

As you have probably gathered life is now much more complicated than it used to be, this extends to going away for a break.Before we left for camping we had to tell the staff at Leeds of our plans. This was so that they could get in touch with the hospital local to where we were staying and make them aware that we were in the area should Thomas require medical assistance. This is the norm as Thomas's condtion can change quickly so we need to be prepared.
I am so glad that we were as on the Thursday that we were away we had an emergency.
We had gone to visit my best friend who lives in the south west, we don't see her often and the kids were having a lovely time.One of her children is the same age as Thomas and they were playing beautifully, we were all in the garden and the kids were playing on the slide. Thomas came down the slide but as he set off he let out the biggest scream. I saw that his hickman line( http://en.wikipedia.org/wiki/Hickman_line) had become free and as Thomas had set off down the slide it had become caught.
As Thomas was screaming I thought that he had pulled his line clean out of his chest( just the thought of it makes me want to be sick)  but as we looked he had pulled one side of his wiggly and  completely snapped it off near where the line branches into two. There was a fair amount of blood  but Rich was quick thinking enough to clamp the line.
There was a fair bit of panicking(me), some quick thinking and calmness(Rich) and just general worry( my best bud). We made several phonecalls to the hospitals in Leeds, Bristol and Devon and finally we went to Devon where a brilliant oncologist did a repair job to the line! I cannot tell you how traumatic it was. We were trying to remain calm for the kids but both me and Rich thought Thomas would end up needing surgery to have a completely new line put in. Thank goodness that this wasn't the case, of course Thomas's line had become exposed to possible infection and so we now have to be even more aware of anything which may look sinister and act quickly at the first sign of a temperature.
Thomas was so brave, he had to be completely still when the doctor was doing the repair, which he did.It was quite noticeable how far Thomas has come in the last few months, in January he would never have managed to keep still as he would have been a bundle of terrified energy kicking out at strangers but having horrible things happen to him has become the norm and he actually doesn't see it like that. He knew the doctors were going to fix his precious wigglies and that he would get to play and go back to the tent once it was done. I am so proud of my little man, he is a brave, strong, kind, polite, funny little boy and I love him so much.I love each of my children so much, they truly are inspirational.

We got back to the tent anyway, via a trip to get the kids a little treat each and our holiday continued as before, I was a nervous wreck but the kids continued to have a great time, which is what it'sall about.
Thomas was due at hospital on the Tuesday after we got back and his line was accessed alot that day for frequent blood tests and all was well with his line, Thomas was quite proud, showing off his wigglies.
Maggie Danhakl
6/25/2014 04:23:45 am


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