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Our time in the USA..
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Ross with Sunflowers

Welcome to our Diary of events during our time in America.
We will get this updated as much as we can.

The NHS granted us approval and funding for medical treatment. We have had to book and arrange everything ourselves as there is no one in NHS Scotland to help us (there is in England) and we have had to pay for everything so far with the exception of the flights, they were paid for us by the Sara Thackery Trust.
Once Ross was confirmed as 'fit to fly' we have had to move to get over here as quickly as possible to ensure as little delay in his treatment as possible.

Thank you to all who have donated so far and to those of you who are yet to make a donation. Please keep the donations coming!

There is a long road ahead of us, but the journey has started well.


Our time in the USA.

Friday 18th Dec - We flew from Edinburgh to Manchester - where we were met off the plane and escorted through the airport to a private lounge to wait for our flight to Orlando. Lynne (Sara Thackery trust) booked all our travel arrangements and the Sara Thackery trust paid for our flights and accomodation at Orlando airport. Thanks Lynne you have done a great job and made things a lot easier for us. The flight to Orlando was long and the kids were fed up but we survived! we got off the plane and Lynne had booked us into the airport hotel which was just yards away for the baggage claim - fantastic! we were knackered and went to sleep in no time.

 
Sat 19 Dec -  There were no flights from Orlando to Jacksonville so we hired a car and Andy drove all the way, we arrived at the Ronald MacDonald house (RMH) late afternoon. We unpacked had some dinner and an early night again!
 
Sun 20th Dec - Andy wanted to get a feel for the car and roads while they were quiet so we managed to navigate to the Proton Beam centre which is close to here and the Clinic and Wolfson childrens Hospital are in walking distance.
 
Mon 21st Dec - At the Proton beam centre for 8am for bloods, then to the childrens hospital for MRI, then after Ross came round from anesthesia it was off to see the neurosurgeon for consultation. Arrived back at the RMH after 4!
 
Tue 22nd Dec - At the childrens hospital for 6:15 am - yes 6:15am! Ross got his Fiducial markers (titanium screws) fitted into his skull today. Then we were off to the clinic for 1pm to meet the oncologist. We also discovered Walmart today - not a patch on Asda I have to say.
 
Wed 23rd Dec - At proton beam for 8:30 where we had various meetings then Ross went for a CT scan and simulation. They also made his mask.
 
Thur 24 Dec - Day off !!! we went to Jacksonville zoo today, the weather was wonderful and the zoo was great.
 
Fri 25 Dec - Christmas day ! Santa arrived in RMH, and the local Navy made our Christmas dinner and it was a fantastic feast of everything you could think off. RMH is quiet as some families have gone home for the holidays.
 

Sat 26 Dec - Ross in hospital for chemo today until Monday at the earliest. Due to swine flu the childrens hospitals are not accepting visitors under the age of 18 - so Katie can't go to the hospital or even visit Ross. Its a bit tricky leaving her at the door, running to the room to let the other run back to the door to pick her up, but we are managing, just! Hopefully he keeps well and gets out after the chemo has finished. However problem number 2 is that in the RMH you are not allowed food or drink into your room so this means that Ross will be exposed to all sorts of people with all sorts of bugs - fingers crossed he doesn't pick anything up when his counts are low.....

Monday 28th Dec, Didn't get out of hospital until 8pm! so it was straight to bed
 
Tuesday 29th Dec, Ross a bit sick today, not eating much. We went out a run in the car today.
 
Wed 30th Dec, Ross still very sick, especially in the morning. Another quiet day with another wee run in the car (to some shops to my delight) 
 
Thurs 31st Dec, We had a clinic appointment today, just vital signs and bloods. Went to Walmart for some shopping. No such thing as Hogmanay in USA! Ross still sick in the morning and only eating toast and crisps (chips over here :)

Friday 1st Jan, Happy new year, quiet day today just stayed at the RMH all day.
 
Sat 2nd Jan, Cold today went to walmart for a bit shopping then decided to take a run out to the beach. We went to the Atlantic beach, it was beautiful, cold but lovely. We also went out for a traditional lunch at an American Baseball diner! - and I thought we had big TVs. Also met one of the volunteers today at the house, Doris, she is 90 this year and was born in Scotland, (Arbroath), she left when she was 9. She is an amazing woman, and it is a delight to speak to someone who actually understands us! - she can still do the lingo after all these years. She has been back to Scotland as she still has a brother and sister in Arbroath - a great woman with a very interesting life story!
 
Sun 3rd Jan, Went to the Museum today, RMH has free tickets and its only 5 mins in the car beside the riverside. It was ok, then we took a quick walk for a look at the river, it was cold, we didn't pack many clothes for cold days!!!!
 

Mon 4th Jan, Start of Proton today - YIPEEEEE, things went well, we also found out that the latest scans show that only a small residual nodule of tumour and some scaring is all thats showing, which is fantastic! this also means that Ross can get a smaller dose of proton than was originally planned - as well as there being a smaller area to treat. We are delighted, couldn't have hoped for better. We also met a family who are over from London area today. They are 2 weeks ahead of us on treatment, Ruddi is about 7 months younger than Ross, he also had Rhabdo but his was wrapped around his bladder area. 1 treatment down 24 to go!!!!

Tue 05th Jan, 2nd day of proton, all going well so far. Its taking 3 - 4 hours for the treatment, depending on how the machine is running and how quick Ross wakes up from the anaesthetic. Spoke with June who is a volunteer here at the RMH on a Tuesday, originally from England she retired over here with her husband. Nice to speak with someone who understands us.
 
Wed 06th Jan, Proton went well today, his port access isn't great. Used the bottom one this week but think the top one might be easier to use. Later back today so we missed Doris at the RMH.
 
Thur 07th Jan, Proton fine again today. Andys birthday today so we went to the St Johns shopping mall and had dinner at the Cheesecake factory - this was recommended to us by Gina the proton nurse (who is exceptional, kids love her) and you might think that it just sells cheesecake - well not only does it sell the most amazing out of this world cheesecake, it also has the biggest menu of food I've ever seen. It was great. The mall was fab too, had all the fancy shops plus the usual. Oh and we played the RMH bingo at night - Katie won and chose a mermaid Barbie doll - canny get her oot the bath now !! Tucked into Walmart birthday cake - not the same as costco.....
 
Fri 08th Jan, First week of proton over already. Ross's eye is going a bit red already, but we know that this will happen and get much worse over the course of time. Proton centre is getting a few new patients over the next couple of weeks so it will be very busy. Glad we are an early slot with Ross's 'snout' being the smaller size, the bigger the size the later in the day they are - not great when young kids are fasting. Hoping to get a tour of the proton centre, heard all sorts of wonderful facts regarding the cyclon and how it works - apparently the electricity bill is 50k a month. Weather cold today, they thought it might be snow but it never came.
 
Sat 09th Jan, very cold today, had a quick trip to Walmart and just stayed at the RMH. Katie and Ross have made a few wee pals they like to play with in the playroom - ok if they are behaving which doesn't seem to be very often these days.
 
Sun 10th Jan, cold today again, took a wee run in the car to Costco (the uk card is valid over here :) the shop is exact same as in Edinburgh - don't quite know what we were expecting but a carbon copy was not what I had in mind!!!! had the obligatory pizza slice :o) kids (and Andy) tucked into hotdogs. Now we know we can use it we can get a birthday cake for Ross next week.
 
Mon 11th Jan, At Proton in the morning, met Doris at RMH when we came back, had a good chat with her, then we nipped out to get a birthday cake for Ross at Costco. Popped into Toysrus to get him a wee pressie (has to be wee to get it back home again) so we got him the small Percy and Edward engines from Thomas the tank as Aunty Laura bought him a Thomas train set for Christmas so they will go with that. Andy decided to get him a micro remote controlled car (it was from age 8 so not sure what 'kid' it was bought for ;)
 
Tue 12th Jan, Ross's Birthday!!!!! 2 today, where has the last 6 months gone! We got to Proton and Ruddi (the wee boy from England also at Proton) had left a cuddly toy and card on his bed which was sweet, then the staff came with a balloon and cake for Ross. It was also Grayson's last day of Proton, he has the exact same thing as Ross and he travelled from Georgia to be here. His Mum and I had been in touch already last Sep through the Rhabdo web site so it was a great surprise when we arrived here to see that they were here too! Katie just loved Grayson and will miss him. We just lunched at McDonalds as the kids like it. We had an eye appointment in the afternoon, everything was fine, they just wanted a good look incase the Proton does anything to the eye or surrounding area. Dinner at RMH with more birthday cake! RMH gave Ross a nice present of some books. Ross had a great day but its just not the same without the family.
 
Wed 13th Jan, Quiet day today, went to Walmart (we have been getting a hard time from the Dreesmans [who are also here at RMH] about visiting Walmart so often! - their Daughter is also at Proton)
 
Thur 14th Jan, After proton we had an Oncology appointment, Ross got some chemo, vincristine, and everything else if fine - infact the nurse says that Ross is her healthiest chemo patient as he is not on any other medications! We have noticed over here that they seem to take an awful lot of medication compared to what we've seen back home - I guess its partly related to the insurance system over here and the NHS budgets back home! Bingo night tonight, Katie won a watch and Ross won a couple of tractor things. Todd even finished his work early to make sure he was here to play the bingo ;o)
 
Fri 15th Jan, Last Proton of the week - 2 weeks down already - yeeeha. Bad news is that we are losing our 8am slot as they are moving round the 'snout' size to do the bigger ones first. We are moved to 10am except for Wed when its 11am - Ross has to fast so its going to be a bit more difficult, however at least we got a couple of good weeks in, also when Ruddi finishes up next week we'll move up to his earlier slot. Went to St Johns shopping centre, had lunch at Panda express, Chinese not such a big thing here as in the UK, not even seen an Indian curry house!
 
Sat 16 Jan, Went to the Avenue shopping Mall, it was raining and this was all indoors so seemed like a good idea. It was ok, I shopped and Andy moaned - just like home! Andy found a barbars called 'Superstar' and went for a haircut from Ernest - he started to panic a bit when he brought out the cut throat razor, but got a good cut - it also meant that I got a half hour of moan free shopping ;o) At night we went out with Todd and Deb (Dreesman) their friend Amanda. Their Daughter was neutropenic and didn't manage to come, she stayed at RMH with her Grandma and friend. We went to Clarkes fish restaurant - it was amazing, the place was full of stuffed animals (a taxidermist's dream) there was hundreds, bears, tigers, lions, moose, giraffe, birds and so much more, then came the menu - it was MASSIVE and had python, alligator and crocodile! food was fantastic - though none of us had the python.......when we got back to RMH the Clappertons had arrived from Edinburgh, Leanne and Stephen, how good was it to hear a Scottish accent and be able to talk to someone without having to think about what you are saying all the time. They have 4 year old Joe who is going for Proton and 2 year old Rudi.
 
Sun 17th Jan, As it is a holiday weekend we decided to visit St Augustine (oldest town in the US), its only 35 miles away but we were told it was amazing at night as its all lit up so we decided to stay over. We arrived and had a wee wander during the day went back to the hotel and ventured out at night for dinner, it was very beautiful, had a nice dinner then collapsed into bed.
 

Mon 18th Jan, Martin Luther King Day today so Proton is closed. Went for breakfast at the hotel, very nice change, then we went to visit the old Fort (Castillo de San Marcos) that is made from oyster shells and sand, the Spanish begun building it in 1672 . Then we went to the discount retail park for a wee bit then came back to RMH. Caught up with Leanne and Stephen while the kids played together, They are settling in ok.

Tue 19th, Back to proton today after long weekend. Ross's skin below his eye is quite red now so we got some cream from the Doctor to put on it. Our slot has changed and it's a bit later now, we are at 10am instead of 8am, due to a rearrangement of the beam size, but they were running late today and we didn't get taken until 11:30, poor Ross was starving and thirsty as he had had nothing since the night before. Was ok when he woke. Came back to RMH and had a wee chat to June, then we needed some shopping so went to Publix for a wee change (Yes Todd, Publix - not Walmart ;o) It was very nice - even had live lobster in a tank to buy with their claws taped up! and we found British foods (sold in the ethnic shelves) and they had some real chocolate - not Herscheys pretending to be cadburys but actual cadburys and nestle stuff! woohooo! so bought a nice caramel and Andy and the kids had fruit gums.
 
Wed 20th, We had a late appointment today, 11am but when we arrived they were running about an hour late due to earlier problems with the proton machine, Ross eventually went at 12:10 and came back at 1pm. He always sleeps more than most of the kids there, when he woke we fed him. Katie was playing with her wee pal Maisiy who is 3 and also getting Proton. Maisiy was last today as she was also getting a PET scan, so she had been fasting since early this morning. The next thing Katie had taken some of the melon we brought for Ross and started to feed Maisiy with it - OMG! WHAT A NIGHTMARE......as they didn't know how much - if any - she had eaten they had to cancel her proton treatment and PET scan today. We felt dreadful, and her Mum was so nice about it too (as I know I would have been raging!) poor Katie thought she was just being a good friend and sharing. Still feel bad, Late back to RMH so we just let the kids play outside (with Maisiy!). Most of the Proton kids are here and they are all around the 3/4 age group so they get on well.
 
Thur 21th, 13 down 12 to go - more than half way!!!! Andy took Katie to do a couple of things with him so she wasn't at Proton all morning. One of the Mums brought her daughter in who was getting Proton but she had took a turn for the worst last week, they were taking her back home so they could spend the time they had as a family, was heartbreaking, we'd only known them for a couple of weeks but these kids get into your heart very quick, she is younger than Ross, our thoughts are with them.

Weather today not great, its been pouring rain all day, we went for some lunch at the Cracker Barrel, it's a restaurant chain that tries to give you that 'little house on the prairie' feel..... Went to Publix on the way home, Andy found a Sun newspaper and some irn bru (Scotlands 'other' national drink for any non Scots reading this) so he was happy. Got back to RMH only to find out that there had been a tornado in Jacksonville! - ooops! least we can say 'once we drove in a tornado' ;o) ! Bingo night, I must have won at least 8 times, was getting a bit reluctant to shout.....Katie won a dress up set and Ross got a monster truck.
 
Fri 22nd, Last proton of the week! went quite smoothly today. Andy wanted to visit a golf thing he'd seen advertised so we decided to do that this afternoon, it was called 'World of golf' they had a big Bob Hope exhibition which was fairly interesting, then they had the golf museum - or should I say the Scottish museum! Troon, Musselburgh, St Andrews home from home. They also had a golf simulator that Andy had a wee shot off plus some other exhibits. We went outside and they had a wee island thing surrounded by water, you had to try and hit the ball on the island - bonus if its a hole in one - it was 135 yards, Andy will tell you the story of 'the one that got away' when he gets home. We then had a shot on the putting green, Katie liked that and was getting the hang of it, looks like we'll be visiting North Berwick a lot this year.
 

Click HERE to see Ross's Proton Beam Therapy in action

 

Sat 23rd, Had no plans today, the circus was in town so we had thought about going, but probably wouldn't have bothered had Tanya (Audreys Mum who is also at Proton) was given tickets from a friend but they decided to go to stay over at Grandmas house so couldn't use them, she offered them to us (Thank you Tanya) so we went to the matinee show - it was totally fabulous, it was Barnums circus and it was the most amazing, spectacular thing I have ever seen - it was superb, trapeze, tightrope walkers, clowns, tigers (10 of them) elephants (lots!) horses, acrobats, trampolines, motor bikers in a caged ball - 7 of them in this teeny tiny cage - and so much more, even Katie and Ross sat still and watched mesmerised by it (Ross did get fed up after 2 hours and a bit restless in the last 15 mins - but for Ross this is a record). It truly was as advertised - The greatest show on earth. By the time we came back Katie had a wee sleep and then it was dinner time, quiet night.
 

Sun 24th, Went out for lunch with Doris today, she is a wonderful woman, very funny and interesting. We also met some of her neighbours, one had a Harley - Andy had a good look at that!  it was almost 5 by the time we got back so the kids just played in the playground and were so tired they were in bed early. Nothing much on the tv, its not great over here - I'll never complain about UK tv again!!

Mon 25th Burns Day and hardly a Scot in sight never mind the haggis!! nae haggis neeps n tatties for us the nicht nae drams either. Day 15 out of 25 at Proton today, we got a tour round the proton site - its amazing how the cyclone breaks down the atoms to create the protons to feed 3 machines. Using magnetic fields, the cyclotron can accelerate the hydrogen protons to two thirds the speed of light. The size of these machines is phenomenal it cost over 100 million dollar to build. We also met Gary Barlow - unfortunately not THE Gary Barlow but had fun winding Ruddis Mum Ali up about meeting Gary Barlow ;o) - sorry Ali! We also saw how they make the 2 dimensional brass plate and the 3D plastic mould (these are used in the proton machine) which is carved with mega precision to create the exact mould of the tumour, where the protons need to hit more the mould is deeper and where the protons are not so strong the mould is not so deep. Protons don't exit the body like conventional radiotherapy, they will only go as far as the 3D mould, pretty fascinating stuff. We will be able to bring Ross's 3D mould home (we are going to need another suitcase at this rate!) it will be good for him to see all this when he is older as he won't remember much of all this - which is probably a blessing at the end of the day. After Proton we took a wee run to the Kingsley Plantation, its a historical site which tells you about how the plantations worked and the part that slavery had to play in their success and demise. It was interesting for us - not so much for the kids! also saw a armadillo, it came up quite close to us - that was the highlight of the trip for the kids!!! came back and the kids played in the outside play area with Joe and Rudi.
 
Tue 26th, 16 down 9 to go, into single figures now !!!! Ross's eye is very red, keep slapping the cream on to keep it moisturised in the hope that the skin doesn't break. Quiet day today, just went to Walmart for some diapers, or is that nappies?, for Ross. Maddie (Todd and Deb's daughter) finished proton yesterday but she is still in hospital so unable to go home just now as shes poorly with the combination of chemo and proton, hopefully will be on the mend soon. We are hoping that one day they'll come and visit us in Scotland. Thankfully Ross doesn't have anymore of the ifosfomide chemo (the BIG one), just the vincristine which doesn't affect him too much thankfully while we are over here. Ruddi finishes Proton on Friday and they'll be back home to Huddersfield - we'll miss our morning chats with Ali and Craig at Proton.
 
Wed 27th, Proton today, bit later on Wednesday.  Went to St Johns shopping centre and had dinner at the cheesecake factory - was delicious. Its usually pizza or pasta at the RMH so it was a nice change.
 
Thur 28th Steve and Leanne moved into a flat so we went to visit them and had dinner there, Baked tatties and salad - no pasta or pizza in sight! Joe an Rudi are loving the freedom.
 
Fri 29th Ruddi Bobs last day at proton, was sad to see them leave but great that its all finished with for them, they are actually flying home to Huddersfield tonight!! Ruddi was oblivious to all the fuss, he just sat there and scoffed his scrambled eggs and cake. Hope Ali and family will visit us in East Lothian soon.  We left proton and headed straight off to Port Canaveral, Andy fancied a visit to the space centre. Arrived at the hotel and there was a Burger King right outside :o) took a wee run in the car down to coco beach. Tried to watch Ramseys kitchen nightmares US when we got back but too tired! comfy plastic free bed called.
 
Sat 30th  Got up and headed off to the Space Centre, it was good, Ross loved the rockets also had a bus journey round the space station and seen the rocket that is due to fly out next Sunday morning, as it was already docked and ready to go. Exhausted and went back to the hotel for an early night.
 

Sun 31st, Went to the Astronaut hall of fame on the way home, it was included in the ticket we bought yesterday but in a different location. It was full of personal memorabilia, Andy had a wee shot in a simulator, Katie was bored...... Arrived at RMH and caught up with the laundry and emails.


Mon 1st Feb,  Back to Proton today, Ross's eye is getting really swollen and red now, also very crusty, poor wee boy hes such a wee trooper too. Missed Ruddi and family, they all got home safely. Needed to get some milk for Ross so nipped out for that then back to RMH. Madie got out of hospital today to Deb, Joyce and Todd were heading home to Atlanta, we miss them and hope Madie starts to feel better soon. Chilli for tea tonight - what a great change from pasta!
 
Tue 2nd, Proton was done in record time today, just over 2 hours ;o) Seths Dad Steve is some character, he was on top form this morning, he really brightens up the mornings, hes into ghosts and loves to tell a story - and hes always asking questions like - 'Do you guys have tennis in Scotland?' its good fun and passes the time. Went out for tea to Sticky Fingers, its ribs and stuff, was very yummy. Quiet night back at RMH.
 
Wed 3rd, Joe started proton today, Steve and Leanne glad to get it started to get the count down going! Ross had chemo this morning, then off to proton then back to clinic to see the ophthalmologist - spent 6 hours hanging about waiting rooms, nightmare! Chilli tonight again for tea - why did we go out last night and not tonight?! maybe chilli is the new pasta.........(as thats on the menu 3 or 4 times a week at least - in different disguises - but usually spaghetti!) started to pack up tonight - where is everything going to go!!!
 
 
Thur 4th, Proton running a bit late today, just came back to RMH and cleaned up a bit more and some ironing (thinking of all you Deesmans out there while I was doing it), tried to get some cash out my bank account and it wouldn't let me - think the RBS have frozen my card due to the transactions in the USA (I know fraud is a problem but boy is this a pain in the a*s), not very handy stuck out here and no access to cash, fingers crossed they don't freeze Andys card or we'll be in BIG trouble! We took Doris to the Clarks Fish camp, check out the decor of stuffed animals (www.clarksfishcamp.com). When we arrived Doris said 'You guys brought me to this place' in shock, as from the outside its a big hut with a tin roof beside a lake, but as the people were flocking though the door behind us she realised that it must be special on the inside. Last time we were here with Todd and Deb it was at night so we couldn't see it properly, glad we went during the day, it was lovely, big hut with a tin roof on a lake with good food - it doesn't get any better than that really! Got back to RMH and it was time for BINGO! won loads again tonight, had the staff that we won't see again saying goodbye, quite sad as we've became quite close to some of these people over the last couple of months. Its very bittersweet, having a child with cancer is an incredibly difficult thing to cope with and day to day living is tough (some days I don't even understand how an earth we have managed to live through this), being with people in the same situation or these people who see this often and understand a bit more helps a great deal - no one, not anyone could possibly have the slightest idea what we have been through to be here today, or understand how on earth we have coped (unless they have lived this experience -  and I hope with all my heart that no one else ever does has to go through this). From the day we found out our 18 month old son had some cancer that we had never heard off before, having umpteen cycles of chemotherapy, infections, to today - having lived in the USA for the past 8 weeks, to ensure our son gets the best possible treatment he can to give him a chance of a future. Something he wouldn't have had without Proton (Thank you University of Florida Proton Institute). Oh and guess what was for tea tonight at RMH - yip it was chilli - only tonight it was in disguise with nachos and salad!! so relieved we went out!
 
Fri 5th, Last Proton of the week - only 1 more to go!!!!! we left Proton and headed off for Sea World. Arrived at the hotel and it was pouring with rain and storm warning so just stayed in hotel for the night and hoped for better weather tomorrow.
 
Sat 6th, Woke up and it was a braw day :o) cold but sunny, went to sea world and I loved it, it was great. Katie loved the Dolphins, she got to feed and stroke them. We watched the shows which Ross wasn't too happy at having to sit about! Stayed the whole day and done as much as we could, it was fab.
 
Sun 7th, Done most of the packing and caught up on the laundry, also cleaned the room ready to leave tomorrow, not an exciting day but managed to get organised to leave.
 
Mon 8th, LAST DAY AT PROTON - its finally arrived, Ross's last treatment. Had his Proton party, got a great Thomas cake. Steve the guy who moves the kids back and forward had Katie and Ross sitting on the bed running up the corridor with them, they both loved it. Was tough saying goodbye to everyone, Katies wee pal Maisey, her Mum, Gran and brother Liam, Leanne, Stephen, Joe and Rudi (hopefully we'll see them back in Edinburgh) Colleen, Steve and family, Jaylen and his Mum and Gran and also Gina the nurse who has been so wonderful, and Steve who is great with the kids big thanks to both of them, Katie, Kendra and Dr Indelicato for all his help and support. Left Proton feeling very happy and a little sad and headed off for a couple of days at Disney and flying home on Friday. Heard that Proton was down on the Tue and Wed - how lucky were we!!!!!!!

 

After the last proton on Monday we drove down to Orlando, we had managed to get a deal on a Disney hotel. We arrived after 5, dumped the bags and headed off to the Magic Kingdom for a wee nosey and something to eat. We seen a bit of the night parade and the Fairytale castle fireworks which were good then headed back to the hotel.
Got up on the Tuesday and headed back to Magic kingdom, arrived about 10 and by 11 it was pouring rain! Disney is also not very child friendly, you can't take a buggy anywhere and have to leave them at the 'stroller park' and carry your child to do whatever you want to do - not great when your child is 30lbs and doesn't want to stand in a queue!
Had a quick look around and decided to go and meet Mickey and Minnie - I had tears in my eyes when I seen Ross's face and reaction to seeing Mickey Mouse, he loved it,  it touched my heart to see the big smile on his face after everything he had just been through for the last 8 weeks! Katie also met Ariel. Got wet so headed back to hotel.
Wednesday we went to the Animal Kingdom, we done the Safari first and hardly seen any animals, Andy and Katie done the water raft ride then we went to see the Lion King show, that was very good. Quick stop to see Mickey, Goofy and Donald again before heading back to hotel.
Thursday we went to Disney Hollywood studios, Katie and I went on the tower of terror - oops big mistake, we thought that as she was tall enough it would be suitable for her - she was terrified (and so was I!) Andy went on after us, he also went on the big Aerosmith rollercoaster. Had lunch and went to the Mickey Mouse Club house show - both the kids enjoyed that. Done the backstage tour, saw some of the parade and headed home.
Friday morning was a mad dash to the Magic Kingdom so Katie could meet the Disney Princesses before heading to the airport, she was in her element. Seth at Proton had given Katie some heart shaped bubbles that she had with her and a couple of the 'Princesses' blew some bubbles with her, she loved it so much.

 
Went straight to Orlando airport after leaving Disney, our flight left slightly late. Ross slept through most of the flight, Katie had a wee sleep but was in good enough form. Arrived at Manchester and had a mile walk to change terminal - that was so bad that we had to laugh or we'd have cried! eventually got to the right terminal and gate and boy did it feel good touching down in Edinburgh. Allan met us and took us home, driving into Ormiston there was a big welcome home banner on the market cross and one on the fence. Inside there were 4ft balloons of Minnie and Mickey!  Its so good to be home, we will miss some of the people we met during our time in the US, and will keep in touch with them in the hope they will one day visit us in Scotland! but as Dorothy says - 'There's no place like home'
 
We'd like to say a bit THANK YOU, to all who have helped us get to and do what we have managed to do, we would never have done this without the support of family, friends, the people of Ormiston, work places (Scottish Power and Kendle) and even complete strangers and many, many more. Also a special thanks to Kevin at Dreamweaving Web design who made it possible for me to let everyone know how things were going for us in Jacksonville with this web site.
 
We are also trying to highlight the benefits of Proton Beam Therapy to Scotland (and wider if possible). People need to know that this treatment exists and may be a better option for treatment than conventional radiotherapy. Especially for children, they deserve the best treatment possible to them, to give them the future we all take for granted.
 
Ross will have a CT and MRI scan on 11th Mar, we will know after this what the next step for him will be.
 
Thanks for reading,
 
Lesley
x