NEXT FUNDRAISERS
Friday 24th June 2011 - Brass Impact & Special Guests
Friday 19th August 2011 - Charity Golf Day (More information) (Registration Form)
LATEST
WEEK 8 BLOG
Can you believe it????
Mum went home this last week and Barry Pelham and Clive Fuller arrived so it's been me and Mils against the stinky boys, lol!!! We've had a really fun few days at the beach and pool, Joe's Crab shack with another proton family, and a bbq last night and few drinkies or two!!
We had the mri resul...t that said the cystic part of milly's tumour is still growing but that it wont affect the treatment regime, so wednesday will be Milly's last treatment day! to mark the event we are asking all her supporters to change their profile pic for the day to the one of Milly in her 'got proton?' t-shirt, its on her facebook page (milly's journey).
She has chosen to go to the cheesecake factory on wednesday to have a little celebration tea :).
Nerves are setting in now, what do we do next? what should we expect? how will it be going home and trying to settle back into normal routine? so many what ifs flying around our heads!!
Not alot else to blog about really, just preparing ourselves for the end of another chapter and the start of the next.
Looking forward to getting home in a few weeks to see all our f and f's, still missing you xxx
WEEK 7 BLOG
Milly had a scan this week to check how things are going. It showed that the fluid cyst part of the tumour is growing again, possibly a response to the radiation, but it's always this part that grows periodically and causes problems!!! so, she needs to have another scan in the coming week to see if there is further growth and to decide if the treatment needs tweaking, it could mean a few more days added on the end to aim the beam in a diffent direction, all very technical!!!
Thanks to Libby Tidy for doing the proton run a couple of times, allowing Paul Vaughan and I to have some time off. We went to the baseball, the science/history museum, had a nice meal and went to a dine/drink in theater to see the Hangover 2!! We've introduced mum to the outlet malls and to Joe's Crab Shack, a great hit!! We went to the zoo's Dreamnight for children attending local hospitals, everything was free and it was a wonderful night, extra special to see other proton families out and about away from the hospital!
The owners of our condo, Wanda and Gerry, came back for another visit to see Milly again and bring a bag full of goodies for her!!! Their daughter sent a present, and cards from their local church school, beautiful words from such young kids, very moving!
Milly is getting increasingly tired and grumpy, she wakes very early in the morning and does not sleep at all in the day, she is very Jekyl and Hyde at the moment (more so than usual, lol), all can be attributed to the treatment according to the docs. We are off to have suday brunch today to mark mum and dad's anniversary (their first one apart), then off to the beach as long as the smoke haze from local brush fires clears!!!
Looking forward to the arrival of friends Clive Fuller and Barry Pelham this coming week, not looking forward to the departure of mum though! Missing all our family and friends at home still, but wont be long now!!!!! Love to all, Emma xxx
WEEK 6 BLOG
over half way through now! had a lovely long weekend friday spent at St Augustine doing river boat cruise, saw dolphins and pelicans, beach on saturday, daytona beach sunday en route to dad going home :(, pool yesterday, lovely relaxing time off.
Mils very excited that she only has 11 treatment days left!! Lovely having mum here, she's giving me and Paul a day off tomorrow and thursday, milly's looking forward to her 'Milly and Grandma Adventure'!!, not sure mum's quite so excited about the journey there and back lol!
We love seeing all the other proton families we've met everyday, such a great support, looking forward to thursday's family night! still more keep arriving which makes us want to set up our charity even more. so many need that extra bit of financial help or a bit of money for a special treat. i know its lost some momentum at home, but 'Milly's Journey' needs to continue. Milly and us are going through the treatment process every weekday, and see so many other young children and their families going through it, these kids and their families are so brave and strong and deserve a helping hand or special moment, please continue to support us and help us support others. Thank you xxx
WEEK 5 BLOG
Cant believe how quickly time is flying!!!
Milly getting very tired but still full of her trademark spirit!!
Sad to see Hannah White leave yesterday, very happy to have Kevin and Libby Tidy (mum and dad!) here at last.
Good day at zoo yesterday, Milly loved the teddy bear hospital!
Treatment ran smoothly, awaiting check up (tomorrow) of eyes and MRI still to be arranged but Milly not so bothered with eye this week so thats a good sign we hope.
Loads of other uk families here, had a great family fun night thursday at Proton, really good to all let off steam and have good chin wag.
still loving catching up with friends and family on skype, especially my bro Adam 'yiddo' Tidy and co, and my bff Julie Christmas :), and of course all our other family and friends!
thanks to people who keep sending messages of support and keeping us up to date on goings on at home and thanks for all the continued fundraising efforts. we cant wait to get home and continue the journey and raise money for other families in similar situations that we have been in. Thanks to Rick Eicholzer for coming to stay with us last weekend, we loved having you here and are thrilled that you want to look into an MJ stateide branch!!
Early starts for proton this week so we'll have time to show mum and dad around and have some time on the beach in the afternoons.
lotsa love everyone xxx
WEEK 4 BLOG
Well into the swing of things now, treatment is running smoothly and Milly actually enjoys going, she looks forward to seeing all the fanatastic team! She is beginning to suffer with tiredness and complaing of her right eye being "sleepy", will speak to docs tomorrow.
Hannah is still with us and has of course been run ragged by Milly, lol! And we have had the pleasure of our good friend, Rick Eicholzer's, company for the weekend.
We went to see Shrek the Musical yesterday which was pretty unsuccessful!! Milly didnt have the patience and couldnt see the characters very well. We made up for this and took her back to Joe's Crab Shack where she danced again with the staff!!
Today we went to check out St Augustine historical old town, a lovely town with lots to see, had lunch in a great place and strolled back to the big fort playground for Milly to let off steam. Then we headed back to the pool near our house and cooled down. Miily has been able to swim, for the first time since being here, this weekend, she is such a water baby!
Treatment times are mid morning this coming week, which is great because Milly will be able to eat sooner and we'll have the rest of our day to do something nice or chill out at home.
Mum and dad get here in 5 days time, yaaayyy!!!!!! We've been missing them and all our family friends back in Old Blighty, wish you could all be here with us, but we love seeing you on Skype or sending letters via good old fashioned post!!
Lots of love everyone
Emma xxx
WEEK 3 BLOG
Its pouring with rain today but otherwise weather has been good, getting used to the heat now. We are hoping it will be nice tomorrow so that we can check out the zoo and go swimming in the afternoon (first time Mils will be able to swim since being here, head has healed nicely from titanium markers).
Then sadly, on Sunday, Paul has to go to Ireland for his nan's funeral and to help sort out some business there with Brian Vaughan (thanks Bri for everything you've done so far xxx). But on a happy note my cousin/Milly's godmother, Hannah White will be arriving Sunday to spend 10 days with us!! This will be a great comfort and support for me without Paul here.
We never got to see the space shuttle endeavour launch, it's still delayed! Hope to see a launch in june though.
I understand team MJ are getting together soon to plan future MJ events, thanks guys xx
Thanks for reading this and for all the messages of support we're still getting, it means so much to us all xxxxxxx
WEEK 2 BLOG
Been stateside 2 weeks now.
ts been an eventful time, all the appointments pre treatment, moving into our condo, condo flooding 2 days later, industrial fans now part of the furniture!, a royal wedding, a failed space shuttle launch, an mri scan to check the spine for possible tumour spread (routine check here), beach visits, mall visits, few nice eating places, a meet and greet with all proton families (milly loved playing with the kids), a sad family event, etc etc! we havnt even started treatment yet!!!
Just keeping you all posted xxx
WEEK 1 BLOG
We are currently staying in a Ronald McDonald house in Jacksonville, FL. it is a very large place, we have a room for the 3 of us with bathroom, but everything else is communal, with an emphasis on everyone mucking in with cleaning and laundry etc. We should be moving to our own appartment very soon.
After checking out the beach in the morning (wow!!),
we had our first appointment yesterday at the Florida University Proton institute. Our doctor, Dr Danny, was lovely and the whole team very helpful. But it really hit home yesterday why we are here! We were shown the disc of milly's MRI scan and Dr Danny explained how much of her brain is being affected by the tumour, more than we thought, so radiation will definitely affect other parts of her brain. We have no choice but to proceed, it's treatment with risks to areas of the brain, or no treatment and tumour grows and damages the brain! Tough one hey!
Titanium markers in the skull have to be fitted this week, so we have first appointmet about that today, day off tomorrow, then CT scan and treatment preparation end of week. Then 10 days off while they prepare treatment and do a plan.
Ta ta for now.
Emma,Paul & Milly
About Milly and Milly's Journey
Pre-treatment appointments with the doctors in Jacksonville, florida, revealed to us the severity of Milly's tumour. It has grown to the point at which it is impacting on most of the front half of her brain. The optic nerves are surrounded, so much so they cannot be seen when looking at the MRI pictures, the pituitary gland is also surrounded, there is considerable pressure on the hypothalamus and brain stem (you will need to google the structures of the brain and their functions to grasp the severity of all of this!!). The oncologists here are amazed at how 'well' Milly appears to be despite all I have mentioned. The risks assosciated with Proton treatment are alarming, but apparently less than those assosciated with standard radiotherapy. There is a small chance Milly could lose her sight in one eye, or both, due to the route the beam has to be sent to reach the tumour, she could lose hearing in one ear. There is a high likelihood Milly will need hormone replacement medication after treatment due to the close proximity of the pituitary gland and hypothalamus to the tumour and therefore radiation damage, this also means there is a high risk of fertility damage. There is a small chance of brain stem damage from radiation. Milly will lose hair at the beam entry points and may get radiation skin damage at the entry sites. We are not really in the position to to say no to this treatment, although felt like it when hearing these risks!! Proton therapy is our final hope of stopping the tumour growing any further. The treatment is 5 days a week for a 6 week period, +/- a few days if any issues during regime. Milly needs anaesthetic every day so that she remains completely still throughout the administration of the proton beam.
Once we knew of our referral to the University of Florida Proton Therapy Institute in Jacksonville Florida, we kicked off a fundraising campaign to help rasie money to enable us to travel as a family to the USA. The NHS cover one return flight for the child and 2 carers but not for any siblings (if applicable!), treatment cost, and accommodation within a set amount per month. Paul had to take leave without pay and i am on half pay, therefore funds were needed to help us pay our mortgage and bills at home and our expenses in America. And so "Milly's Journey" was born and the fundraising took off at lightning speed!!
We are very lucky to have a very supportive network of family and friends who have really stepped up to the mark! The Crawley community, and wider, have provided an astounding level of support and a lot of money has been raised, enabling us to travel to America with peace of mind that we have a home to go home to, bills are being paid and we can stay in the US as a whole family and cover expenses comfortably. Fundraising is continuing with several big events still to take place!
We did not have time to officially register the "Milly's Journey" charity before leaving for Florida but everything is lined up for us to do this when we return to the UK. Our mission is to continue to raise money to be used as grants for families that need to travel to the USA for Proton treatment. The money would be for the purpose of supporting families with financial difficulties; or to provide money towards flights for siblings; or to provide money towards days out for the family to local attractions...there is so much that families need to help support them or give them some relief and 'Milly's Journey' would love to be in the position to help ease the burden in some way. We would also like to help children and their families in the UK that need support to cope through brain tumour treatment and re-hab.
We will be holding some funds in trust to be able to support us and Milly through any forthcoming treatment issues, everything now is so unknown, and we will not know if treatment has been "successful" for possibly months down the line, and side effects may not materialise for some time, so we need to have a reserve should we need it in the future.
We have stated from day one of our fundraising that we want to give back to some of the charities that have supported us in some way through Milly's journey so far, these being GREAT ORMOND ST HOSPITAL (we would specifically donate to the REACH charity which is their research department into childhood cancers), THE SICK CHILDREN'S TRUST (who provide home from home accommodation to parents/families when children are in hospital for a period of time), CLIC SARGENT (childrens cancer charity who, to mention but a few of their purposes, give grants to families to help them financially, and provide UK holidays at no cost to cancer families), and BRAIN TUMOUR UK (support adults/children with brain tumours and their families, fund research, etc etc). As we continue on our journey we continue to find other organisations that we would like to donate to and hope to do so if fundraising continues, which we hope it will!!!
I will update Milly's Journey FB page regularly with all news about Milly, be it hospital stuff or fun day to day life of Milly stuff! Hopefully it will not all be doom and gloom, and for those of you who don't know Milly but are interested in her story, we hope to enlighten you to the wonderful world of our Milly, she is our beautiful, amazingly resilient and resourceful daughter, and she's a funny little 5 year old full of beans and mischief and endears everyone to her that is lucky enough to meet her.
THANK YOU FOR READING THIS, PLEASE CONTINUE TO FOLLOW THE JOURNEY, EMMA, PAUL AND MILLY VAUGHAN XXX