Proton Week 1

So after a few more stressful weeks running up to Xmas, packing cases and sorting presents!!we managed to have a nice but brief Christmas with Christmas dinner at my mums before we spent the evening of Christmas Day and Boxing Day clearing away and taking down the tree, cleaning and sorting the house. It was enjoyable but It was also our first Xmas without nanny Jean, Darren’s first Xmas without his mum, so definitely a hard one definitely not what I’d call our normal Xmas!! To top it Tayla had inflamed tonsils!! So Darren took her to a&e 4 hours before we needed to be picked up to go to Heathrow!! Temp of 40 and some antibiotics later, not much sleep either! we were on our way! Our friend Mat works at Heathrow and made sure we were given the VIP treatment!! He met us at check in, they upgraded us and escorted us through fast track !! We had about 3 different people looking after us!! Sorting everything, which was amazing!!!!!! It felt so weird but also so lovely!! Xx Thankyou so much Mat! You will never truly know what that meant to all of us!

So our first week!! it’s been a trying week! To say we are shattered and emotional is an understatement! Sounds and Feels like Everyones got flu!! Our Apartments nice and spacious in a fab location 10 minutes from restaurants, shops, supermarkets and cinema. We arrived here after such a long flight especially with Tayla not well we’ve never gone further than 3-4 hours but actually they were all amazing, 10’hour flight to Atlanta, got to meet the captain! then had to rush and change again for another shorter flight to Jacksonville with all the bags and cases and through another security!

We were picked up from the airport by protons private taxi, but then couldn’t locate the key for the apartment as it was dark and new so was sitting in the taxi for well over another hour!! Children were beautifully behaved, considering we had all had enough by then!!if I could have just fallen to the floor In a big heap I would have so they did brilliantly.

We came in dumped the bags and went straight to bed!! About 8pm here so about 1am your time so nearly 24 hours later. The next day we needed to borrow sat nav and car seats from proton centre so our taxi picked us up at 11 and we got to meet some of the fab staff at proton who lent us a kettle car seats and DVDs too, ( English ones don’t work here) ( we didn’t know that! lol,  once we picked up the hire car I think we all felt, even more, vulnerable! The roads take some getting used too more like motorway driving back home, and we needed to go to Wolfson children’s hospital that night at 7pm for Louis to have MRI, it was dark and we didn’t have a clue even with a sat nav and ended up at a different children’s hospital!! It was sure going to be a long night!

Louis MRI unfortunately didn’t go to plan either by the time he was registered and prepared it was 8.45pm and they wanted to do a 45 minute MRI where he has to stay completely still, even though he’s managed this before I think it was all just too much, everything was daunting even though the nurses were so lovely it just wasn’t going to happen! 8am the next day we were back at proton centre to speak with Dr Danny and sign some paper work, they also wanted Louis to have his mask made and have a ct scan, again this was a no go! Poor Louis was just so petrified and so emotional and unsettled it was heartbreaking!! You just want to say ok don’t worry but you can’t! We have to carry on, So treatment has had to be put back a couple of days as schedule and plan can’t be put together until these scans are done so unfortunately these will now have to be done under sedation! Not something we really want due to Louis being cortisol deficient but I don’t want to distress him any more.

Wed morning Louis had a successful MRI under sedation 3rd attempt at a 45 minute detailed MRI! Which meant more canulars ! Louis biggest fear, so he was emotional all day!! But we did get to spend a couple of hours around the pool, which was sooo nice! It’s turned quite cold here now and has been raining but hopefully, we may get to visit the pool again! Next scan is not till 4th Jan where his radiation mask will also be made under sedation as he doesn’t like the heat on his face! It’s s bit like warm rubber that has to be warmed and placed over his whole face! then once in place sets hard and goes cold but it does look pretty scary! Louis tumour used to heat up the side of his face so he has a strong fear with heat near his head! We have agreed for him to be sedated to have this made as definitely less distressing but we don’t want him to be sedated everyday for 6 weeks for the actual treatment so Louis currently has a practice mask that belongs to Kim one of the child life specialists and he has to practice wearing when we are at home, he has managed 10 mins so far until today!! Today he managed 20 mins!! so we are definitely making progress! So proud of him!! He will need to wear it for 35 – 40 mins a day for his radiation treatment. His mask will be smaller and tighter to his head but hopefully, this is definitely building some confidence.

Due to the new year and sedation, treatment will now start on the 14th Jan. So after an emotional very stressful couple of days, we were recommended to try a no fuss no frills restaurant as kids would love it, it was bizarre, it was in the Middle of a lake full of real stuffed animals!!!! And a live alligator in a tank in the middle of the restaurant! Kids were astonished! We all were, but at least, we could say we went! New Year’s Eve was the Worst day ever!! Everyone was missing home, in fact, Tayla kept asking when can we get out of here! We couldn’t FaceTime everyone as we all got upset just reading messages, I did buy some sparklers from the supermarket but it started raining so couldn’t even do those! when everyone had calmed down, we had a microwave dinner and played Pictionary with a cup of tea!! All in bed before the new year!! Xxx. Goodbye, and do one 2015! … Worst year of our life!

New year can only mean new beginnings hopefully, nicer day today, everyone a bit happier! We did sparklers and went and got homemade ice cream!  somewhere else we were recommended and kids loved it! Ice cream never fails to bring a smile!! It has rained all day here!! yesterday was miserable! Today much better, and we found out we can go Disney 5th-12th!! Mask and scan made on the 4th then Treatment starts on the 14th a few more tests on 13th with a Quick Disney trip thrown in between, hopefully not in the rain!!!all feeling better today! More smiles.

The best news for me this week is hearing that Louis has less than 1% chance of proton beam radiation affecting his eye sight further! Less than 2% chance of it affecting the hypothalamus!! and 80% chance of proton getting rid of this tumour! When Dr Danny said he sees Louis treatment being successful and said he imagines Louis will be able to carry on with his life, grow up, get married, have children whatever it takes and live a good life It took my breath away! The tears were coming without me even realising I was crying! When your children are born you take for granted they will live a full life, it’s what we all expect more than anything, you dream about what job they will do how many children they will have what they will look like at 18 but you never ever think they won’t live a full life due to a life threatening illness! You never think any different, I never did, you never imagine someone telling you your child is Ill, your child has a tumour, your child needs life saving surgery and radiation and daily meds for life!! You never think it will happen to you!

So now Since August for us to hear your son (our Louis ) will live a life,  Not for a year or 5 or we don’t know !! actually live a life!! Have a future! At least, have a shot like the rest of us!! Something we thought had been taken away back in August. So all this is worth every unsettled moment, every stressful shout!! Everyone’s tears and tantrums, unsettled toddlers and feeling so overwhelmed out of our depth all the time you can’t breathe! I’ll take it all 10 fold! I’ll do it again and again, 10 weeks in the states no work, no school, hopefully, free weekends to venture out, going to Disney world! Maybe sounds appealing to some and granted there are definitely worse places to get treatment, believe it or not we feel grateful for our NHS right now today, they have invested in our sons life and given back our hope our future and the best treatment available and you guys have helped us every step of the way, financially,and emotionally, the support, the messages the donations and for all of that We are so truly grateful but would we swap for our little mundane life back in the UK Obviously! IN A HEART BEAT! give us the school run, homework after school clubs! Give us dull days, hyper kiddies, mud from the garden, everything we might sometimes have a moan about, I’ll swap it all.

BUT for now for today! For the next 10 well now 9! Weeks, We will embrace! We will be so grateful, we will be brave, be strong, be adventurous!! put up a good fight, have fun, make memories good and bad, cry lots, laugh, explore, take up every offer, every opportunity, experience, make friends and definitely see this as something that will only hopefully happen once in our lifetime for however long that will be, even if we would prefer it wasn’t happening, so as long as we are together whether that means harmonious or yelling at each other and one of us throwing a big tantrum! where ever we need to be we will make the best of it! Together. We wish with every wish this never happened, I ask my every quiet thought why? Why? What did we do wrong ? Why our family? But as I was told [it is what it is ] , shit happens so just keep on keeping on and always make the best of a bad situation no matter how hard as you truly do not know what tomorrow will bring, everyone everywhere is facing their own battle, don’t judge from the outside always be kind and one thing we have witnessed along this journey sadly, there’s always someone going through worse then you X

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