Proton Week 4

So Tuesday ( Harlis birthday) Louis had his weekly MRI which was so different to our MRIs not as loud and your whole body doesn’t have to go in! Making it much more enjoyable! Not sure that’s the right word.. But Louis coped brilliantly and I was allowed in to hold his hand which was lovely! Wednesday treatment was at 6.45am!!!!!!!!! we then had a 12-1.30pm Wednesday lunch for all the people finishing treatment they speak and cry it’s all lovely and the centre provide lunch! We had a huge table for all the lovely families we have met, English families mostly, Beth is 22 and has just finished her treatment she lives 1 mile from us back home her mum Allison helped me lots before we came over answering lots of questions and has been a great support, they are both great, and it was Beth’s last Wednesday lunch so we all rallied around to support her. Everyone’s lovely and we talk for ages about doctors in the UK, hospitals and diagnosis stories! Then we had to meet with Louis doctor, doctor Danny, he is amazing!! After 3 sessions of Louis having proton radiotherapy side effects like tummy ache, headache sleepiness, sickness would kick in. If you haven’t got any of them then chances are you probably won’t get any and Louis has only got tiredness so Touch wood!!!!!!!! fingers crossed!!!!!!! He’s doing great! Xxxxx

We are so proud of how well he’s coping with all of it, people are shocked he’s not having to be sedated as some children older can struggle with the mask and need sedation, he makes me so proud everyday, it’s only been 5 months since surgery and what he has had to cope with and adjust to with surgery, meds etc and now new treatment in another country miles from home at just 8 years old is just incredible xx

Some children we see and meet are so young and so poorly, and deal with so much! It’s just heartbreaking, We have made friends with a lovely family from Wales Daisy has bone cancer Ewings Sarcoma and never stops laughing and smiling!! She is truly incredible Her little brother Zak and Louis are like little twins , they are lovely to hang out with and just shows children Cope with stuff much better than us adults! They take it all in their stride, As much as I’m still so hacked off and disappointed with our NHS! For initial mis diagnosis but also for nearly not sending him so soon for proton I have to think positive that he’s actually made it here In the best place with the most amazing doctors and he’s coping so well with it, we got here in the end which I am truelly grateful for.

They have confirmed though that there is definately a small piece of tumour still present , even though this wasn’t confirmed in the UK we were infact originally told Louis Tumour had all been removed! Which was the reason for waiting! Not good, not impressed but if I dwell I can go to a really dark place which gets us no where, it doesn’t bear thinking about, we have to look forward not back and think we are here getting the treatment he needs. Everyone loves Louis and the girls, and think he looks super cute in his new glasses, For every 5 days of treatment Louis gets a sticker on his chart and after every 5 sessions the lovely Kim takes him to the toy cupboard to choose a toy!! LEGO of course ! Louis has started to become tired this week from proton and he’s been having a sleep in the afternoons, but otherwise so happy and loves going in and seeing Kim and doing craft at the craft table whilst waiting for treatment. The craft table is the most lovely place to sit whilst hanging around proton, they do paint therapy and arts and crafts, this week Louis Harli and her friend Daisy made bracelets, and also you can make medals to go in the basket that the children who graduate can then choose from to wear and take home, the children have made bracelets, painted pictures! All sorts it’s the best place to get talking to other families too and so nice for Harli whilst Louis having treatment, they provide hot chocolate as well which we all love xxX

Every other Thursday evening the paediatric team Kim and Heather, organise dinner and family fun night for the kids!! We went for the first time this week, We played Disney Bingo and Every child won a Build a Bear as their prize! Xx so cute Tayla chose Olaf!! Obviously! They all loved it, lthen the brilliant Kim who co ordinates and looks after all the children (she’s so amazing, she looks after so many children but makes you feel like you are her only patient ) sorts out tickets for events and this week gave out circus tickets!! So Friday night off we went with Daisy and Zak and family to the circus! It was amazing and Harli and Louis did not move from their seats! We all had such a lovely time! Saturday it was so cold here Louis said it feels like there’s ice cubes in the air! So we stayed in and got some school work and washing done!

It’s not easy in the week Tayla gets so bored and the walls are paper thin! Our poor Neighbours! She’s a little unsettled over here but that’s to be expected!

Weekends are all about making the good memories and getting out and about and that’s thanks to you guys, it becomes expensive when you add it all up, we are a family of 5 so even 1 dinner out is costly, we’ve also had to pay extra as NHS only fund 2 bed apartment so we’ve had to pay extra each month for our 3 bedroom apartment, extra for a bigger car hire as we needed 7 seater to fit cases in etc, hotels, petrol and food, DISNEY!! flights for the girls, food shopping, loss of earnings,travel insurance! Darren isn’t making any commission whilst he’s here which we rely on to cover our bills back home and I’m not able to do personal gifts whilst away either. Theres no way we would be able to do it alone without being heavily affected financially, who knows what life has in store, who knows what’s waiting around the corner. We are a prime example of that! We are in the most amazing place to have treatment, just wish we were here for other reasons.

When this all began back in August! We were a bit embarrassed and felt awkward about setting up our go fund me at the start as some of you who know me well know how I felt.. but from coming here I can see it’s the norm, it’s what you have to do! every family does it and are encouraged to from the hospitals, we are so grateful now that we did and that the support we recieved was out of this world, I was naive at the beginning and too proud to ask for help I admit that, one family who didn’t do it said it took them years to recover and regret not doing a go fund me, we are truelly grateful our children get the chance to make the most amazing memories after some of the worst memories and hardest months they have experienced and we get the security of knowing we haven’t got to go home and worry for years to come. X

Today we drove down to St Augustine to Marineland for the children to feed the Dolphins and see the Sharks, for them it was the most incredible experience they were able to get up close and personal and have a once in a lifetime experience! It was incredible to watch, Louis smile radiated,across his face I haven’t seen that smile for a long time and Harli giggled the whole time, what a way to end our 4th week here! .. We thank you all for helping us make these 10 weeks more memorable, especially for our children, for the right reasons, it’s an experience we will never ever forget good and bad! .. Here’s to 6 weeks and counting X love from Jacksonville xxx