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.
 
Hi everyone!,
it seems like ages since I have updated the blog, I will first tell you about treatment and then I'll do another post about our break away.

Thomas has started the next phase of treatment which involves a medicine called retinoic acid.
This is a treatment that we give at home, we will give it twice a day for two weeks of every month.It is a faff to prepare as it comes in small capsules, we have to cut the end off these and squeeze out the contents and give them to Thomas in a petis filous or similiar.

Thomas has taken the new medicine in his stride, it's just another thing to go alongside the many others that he takes.Thomas doesn't need an NG feeding tube like many neuroblastoma kids so has got used to taking his medicines orally and  thank goodness he mainly does so without fuss. His face and mouth have become dry and sore but other than that it's business as usual.It strikes me as odd that we are giving this medicine to Thomas yet we are told wear gloves when getting it ready and to keep all utensils that we use away from the things used by the rest of us, we even have to put all rubbish in a sharps bin so that it can be incinerated!

Retinoic acid will  continue every month until january and will be alongside immunotherapy.Sadly in this country immunotherapy is still a clinical trial, children are randomised to recieve one of two arms.
One arm is anti- GD2 only and one arm is anti-GD2 plus something called IL2.
Thomas was randomised to recieve the anti- GD2 alone, which disapointed us as in America a similar trial showed that good results for improving survival.The American trial included something called gmcsf along with the anti GD2 and IL2 , which is not being trialed here.
We have been exploring many different options trying to see if we can get access to all three drugs for Thomas in the UK, sadly this hasn't worked out as we had hoped. It is all very complicated with trial sponsors etc and we just didn't have time on our side. Hopefully families in the future will be able to explore this further and may have more success.

So now we are looking at Thomas spending a week of every month in hospital, the anti body that he will be having causes some nasty side effects including acute pain and therefore Thomas will be also having morphine. I'm dreading the whole thing but a necessary hurdle to jump over. Thomas has been such a trooper throughout each stage of treatment and the relentless testing etc lets hope he can keep it up.

Thanks for listening