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
 
Hi all,
 It's been a few day since I have updated the blog.Life, as usual has been busy! The appeal continues to pick up supporters and we have lots of things in the pipeline for the coming weeks and months. Yesterday one of my best friends Sharon and another friend Sarah had a stall at a table tots sale for us, lots of people donated great things that we could sell and Sharon and Sarah collected it all, sorted through it and then sold it on our behalf.They raised £133 and still had lots of stuff to sell at the next sale, brilliant! Thanks girls.
We have had so many wonderful people come forward with ideas and people are actually organising things on our behalf, which is amazing. Of course we need to know details of exactly what is happening in our name but with the best will in the world we cannot do everything ourselves.
We have never been comfortable with the idea of sharing our lives with the general public and in that respect fundraising is hard. We are private types but we are getting used to sharing parts of our family simply because we have to. On the plus side to that we have been shown how many people are rooting for us, complete strangers are coming forward to help which is amazing, and our friends have been wonderful.They are really getting stuck into organising things despite having busy families and jobs of their own.

The reason that we need to do this is relapse.The threat of relapse is something that we can not afford to be complacent about, okay so Thomas has coped really well with his treatment and we are so so grateful for that but Neuroblastoma will not care,not one bit. Relapse can occur at any time, even before we have finished treatment and therefore we need to raise as much in the way of funds as possible so that should relapse happen we have more options that we can use to deal with it. That is the grim truth.

Thank you to everyone who has shown support so far, through kind words, donations of money or goods that we can sell, ideas, sharing our web links, organising events. We really could not do this without you! xxxx

 
Hi everyone,
last day of radiotherapy today!
That means Thomas has had 15 general anaesthetics( 1 was a dummy run), 14 doses of radiation and 14 mornings without breakfast. Phew, thank goodness that's over with!
Having said that Thomas has coped really well .He has approached each day with enthusiasm even though he has had to be out of the house by 7am and hasn't been able to have breakfast.He has spoken about his special sleeps with anticipation rather than dread.He hasn't complained of feeling sick or exhausted which are common short term side effects. 
The beauty of being three years old I guess, he hasn't got a clue what is happening to his body, the possible side effects, now and in the future.
 Thomas just seems to have bounced back after each session, his main concern is getting some food and what to play with first, he just wants to get back to being a three year old tear away!  I am so proud of him!
The children and young people that we have met along the way are amazing too, we have enjoyed speaking to one particular young man and his mum during our time at radiotherapy( I'm just sad that Thomas was being stroppy and wouldn't have his picture taken with them, lol).
Anyway, on to the next phase of treatment now.I just hope Thomas copes so well again.
Thanks for listening to my ramblings,
much love,
Toni x
 
Hi everyone!

Team Thomas has had a busy weekend. My friend Caroline hosted our first girls night in last night in and it was just what I needed, lots of laughs, chatter, silliness and a few drinks.Thank you to my girls for a brilliant night raising some money for The Thomas Cammack Appeal.

Today a young man whose Mummy is my best friend,did a 15 mile bike ride for his little mate Thomas.
Trai, the young man in question has been planning this since we launched the appeal a few weeks ago. He decided what he wanted to do and then started  planning and getting sponsors. Trai is ten years old and he has been raising awareness of neuroblastoma and The Thomas Cammack Appeal in his village. He even spoke to his peers about his plans in a school assembly, quite a nerve wracking experience I should think.Well done Trai!

Trai also roped in his Daddy, his friend Katie and her Daddy and (our newly adopted appeal mascot) Digger the dog. It took them about two and a half hours and at the end  they looked absolutely filthy!! Well done to all of them, the ice-creams afterwards were very well deserved! Thank you so much guys!!
 
Tonight I shall be spending the evening with some of my lovely friends, having a girls night in! I am really looking forward to it, it's been a while since I caught up with everyone properly! There will be wine (for me anyway), friends and laughs, oh and hangovers in the morning probably.
Girls nights in is one of our ongoing events that anyone can organise with thier group of friends (see our events tabs). Such an easy thing to organise.
 
Hello everyone,
Thanks for taking the time to look at our website. As you probably know our son Thomas was diagnosed with stage four, high risk neuroblastoma in January (see the meet Thomas tab for more info) and we have now launched an appeal in order to fund any possible overseas treatment that Thomas may need in the future. Our goal is at least £300.000, a huge sum of money. We are busy organising various events and our team of supporters is growing by the second. We are grateful for every little bit of support that we have received so far, please keep it coming. 
I will aim to use this blog to update you on our progress and to document the journey of team Thomas. I hope that I can include YOU in that team. Please get in touch and share your ideas for fundraising.
Much love
Thomas's mummy xx 

Hi

7/15/2011

2 Comments

 
A big welcome from Team Thomas to our new website. We will be using this blog to update on Thomas's progress, fundraising events and any other news as time progresses. Please stay in touch. Many thanks xxx