Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Give a gift in honor of this child. Sophie Jay Sophie's Photo Album Current Page Page 1 UPDATE: 3-5-09 I have received news that Sophie went to be with Jesus April, 2008. Please keep her family in your prayers and take comfort in knowing that she is where we all hope to be one day with our Lord. God Bless, Elizabeth UPDATE: 3-19-08 Sophie is back to palliative. That nasty thing has now invaded her brainstem. I'm talking with Dr. Tim today about chemo as a palliative measure, he is frightened of the Avastin side effect of brain bleed as Sophie's tumour is quite vascular and as of last MRI (last week) it has a small bleed in the middle of it. Maybe Temozolomide, but Sophie and I have gone against radical surgery. We have a great team here that are trying very hard to see if surgery is right for her, but if the tumour can't be removed completely, it is just not worth it. Her neuro would have removed it years ago if it were an option. So for now we are living up at the hospital and Sophie's great, she never complains, we can still communicate mainly through mmm mmm and aah aah for yes/no. And her sense of humour is well and truly there - she still laughs at my jokes! Spontaneous remission is still on the cards for our Easter Miracle, better happen, we are so running out of time..... Love, Leanne, Stacey, Sophie and Luke UPDATE: 9-8-06 Finally updating the page! Didn't put the last MRI results up as I was not impressed by them. We do so much every single day, that to have that revolting cluster of bad cells not shrink is just so darn frustrating! We had our next MRI brought forward and Sophie went extremely well with no GA! We listened to Missy Higgins and half way through the MRI they put the contrast in and I noticed Sophie swishing her tongue frantically around her mouth. Her first tooth came out!!!!!!! So in the middle of the MRI, I picked the tooth out of her mouth with a tissue, put it in my pocket and the tooth fairy visited just before we came out of the machine! The nurse raced over and showed Sophie what the tooth fairy left - a little container with beautiful butterfly and flower stickers on it and two dollars inside! Sophie was so excited!! MRI - 21st August - Results:- Stable - no growth, no change, nothing. So looking good! UPDATE: 6-30-06 We are still waiting patiently for our MRI results! Sophie had her MRI on Wednesday 21st June and it was a busy day at the hospital. We have planned this MRI to be the last with a GA! Sophie told the anaesthetist that next time she'll lay still and bring in her Missy Higgins cd to listen to and then she can also eat breakfast! We don't like fasting very much at all! And after fasting all night and most of the morning, Sophie was welcomed by the gang at the Royal Children's Foundation with a fabulous "brunch" that she has told all her friends about at school! Thanks guys, for your hospitality and the radio (yes, Luke found the siren within 30 seconds of Sophie allowing him to have a turn and no, he wouldn't turn it off!!!!) Stacey loved all the goodies and Luke is having fun with his car - when the radio is out of reach! Went to the Kids Big Day Out at the Silks Restaurant and Albion Raceway. We had the best time - making biscuits with faces, lolly skewers, eating fairy floss, going on the big slide, train, carousel and cars...... Lunch was unbelievable! Thankyou!!!!!!!! Post those MRI results on Wednesday night! UPDATE: 6-23-06 Interesting start to a wonderful day - did the Mother's Day Classic 4km FunRun! Was heaps of fun finally having a run with lots and lots of other people instead of by myself. So I did myself proud for my first funrun - keep you posted, as they are a little addictive and I'd like to do more! May started off with a super exciting weekend on the 6th with an extra special surprize of a helicopter ride and a ride in a Caribou with the guys from CCS and the Amberley RAAF base. We all enjoyed are joyflights immensely, especially when the pilot opens the huge back end of the plane in midflight - never been on such a scenic 20 minute journey ever! Luke held on tight to the webbing behind during takeoff and promptly fell asleep still gripping the webbing for the whole flight! Everyone is having a fabulous time at school, preschool and kindy and in a really comfortable routine. Sophie went on her first preschool outing to "Captain Senses" and loved the music! I got to be spoilt with a lovely Mother's Day brunch thanks to Re-Max and Camp Quality at the Kerry Craig Emporium in the city - had a wonderful time, nothing like doing real girlie stuff every now and then! Hope every Mum out there had the most special of days and a super big special Mum's Day to Andrea and Tracey - the two most inspirational mums I know! UPDATE: 5-19-06 HAPPY MOTHER'S DAY!! Interesting start to a wonderful day - did the Mother's Day Classic 4km FunRun! Was heaps of fun finally having a run with lots and lots of other people instead of by myself. So I did myself proud for my first funrun - keep you posted, as they are a little addictive and I'd like to do more! May started off with a super exciting weekend on the 6th with an extra special surprize of a helicopter ride and a ride in a Caribou with the guys from CCS and the Amberley RAAF base. We all enjoyed are joyflights immensely, especially when the pilot opens the huge back end of the plane in midflight - never been on such a scenic 20 minute journey ever! Luke held on tight to the webbing behind during takeoff and promptly fell asleep still gripping the webbing for the whole flight! Everyone is having a fabulous time at school, preschool and kindy and in a really comfortable routine. Sophie went on her first preschool outing to "Captain Senses" and loved the music! I got to be spoilt with a lovely Mother's Day brunch thanks to Re-Max and Camp Quality at the Kerry Craig Emporium in the city - had a wonderful time, nothing like doing real girlie stuff every now and then! Hope every Mum out there had the most special of days and a super big special Mum's Day to Andrea and Tracey - the two most inspirational mums I know! UPDATE: 4-28-06 Had another fun and busy month. Sophie enjoyed Junior Camp immensely and one of her favourite activities was canoeing! She made Heather take her three times! The following weekend we went to Camp Crystal and had a ball going 4 wheel driving around the property through damp creek beds and up and over all the hills. Luke just had one big grin on his face and Sophie went to sleep! Stacey had fun with all the other kids and had a couple of rides on the big horse! Great activities for the mums too - proudly showing off two necklaces I made in our jewellery making class. Cold, very cold overnight, but enjoyable all the same. Looking forward to next year's! Had a hospital visit in there somewhere and that was just a quick catch up with everyone. Easter was heaps of fun - went out with family for dinner on Saturday and then got the opportunity to go up the Sunshine Coast for two days. I didn't need to be asked twice, off we went and built sandcastles, went for a hike around the rocks at the point and just had some serious fun in the sun! Then back to school with a few public holidays to work around and shuffle a few kindy days here and there. Should be back on track soon. Sophie had a little get together with some preschool friends at the local farm to ride ponies, brush them down and then feed all the other animals - it was so much fun! Stacey had a sleepover with 7 friends - bunch of eight year olds - I somehow survived!! Got so much more coming up and will update again soon! Love, Leanne UPDATE: 3-31-06 Happy Birthday to you!!!!! Happy Birthday to you!!!!! Happy Birthday Dear Sophie, Happy Birthday to you!!!!! Sophie is 5 years old - Friday 31st March! Wow what a milestone for us! And Sophie is off to camp this morning. They are going to Alma Park Zoo to be spoilt this weekend and have lots and lots of fun dressing up in a Green Theme! Heather will look after (spoil) Sophie all weekend and Sophie is so looking forward to it! This is her first Junior Camp through Camp Quality and we'll be going on another camp during the school holidays - Camp Crystal with CCS. Feels good not having to go to the hospital every Wednesday but we'll catch up with everyone up there next week for a port flush and blood tests. Looking forward to the Easter break coming up and just having fun around the house and hopefully get to the beach for some sun and surf! UPDATE: 3-24-06 We've been very busy having fun lately! Stacey has been on Sibling Camp through Camp Quality and enjoyed her day at Wet'n Wild and the rest of the weekend being spoilt at Tallebudgera on the Gold Coast. She starts swimming lessons through school next week, she already swims like a fish - but any excuse to get into the water! Sophie is looking forward to Heather spoiling her for her birthday weekend at Junior Camp! They go up the coast and will have a fantastic time with a Green Theme - trying to locate a frog outfit right now! Luke is loving Junior Kindy and sings all the songs and does all the actions! We all enjoyed our sail to Moreton Bay on the schooner - South Passage! Wow what an amazing day!!!! Luke wants to sign up for crew! He even tried to stowaway when we had to leave. This boat is just huge and we can't wait to go again! Luke and Sophie donned life jackets to swim in the sea and thought that was awesome - Luke kept telling everyone "sharks are eating me" and had them all in stitches! Sophie had all the crew wrapped around her finger especially lovely Rana and Skipper Brian made her a very special plaited bracelet! Looking at another family camp soon and then it's school holidays and Easter Time! Happy 5th Birthday to my beautiful little Sophie for Friday 31st March!!!!! Love, Leanne UPDATE: 3-10-06 Another good week - Sophie tipped the scales at 20.3kg! She tells everyone she's "chunky"!! We have now officially taken Sophie off chemo - so no hospital visits for one month! We are going to miss everyone so very much as every two weeks we have been up there in our 'permanent' time slot! For the last two years! Now we have detox to look forward to - I want all that chemo out of her body and try out all our magic potions and give it the best shot we can! Stacey goes to Wet'N Wild on Friday for the start of Camp Quality's Sibling Camp. She is going to have the best time! And three weeks until Sophie's birthday and Junior Camp! Will keep everyone posted on all the happening this month - we have lots of fun stuff organised and birthdays...... Love to all, Leanne UPDATE: 3-3-06 STABLE !!!! Again, we have a stable tumour. The MRI went nice and smooth this morning and Sophie wants to take her Missy Higgins CD next time and try and keep still for the procedure instead of going under a GA - she does not like that 'cranky' gas! I will be able to stay in the 'magnet' room with her if she stays awake for it, so we will do a couple of practice sessions over the next couple of months ready for the next MRI in June. Change in protocol soon for Sophie's vitamins and juices and we'll prepare for finishing up chemo at the end of April. She has been on vinblastine for almost 2 years and it hasn't done anything, so we'll finish it and I'll try a really good detox and see how her body responds to the nutritional supplements and juice without fighting toxic chemo at the same time. Hoping this will really allow her body to heal itself! This will be the best chance we get - with a back-up chemo on the ready called temozolomide. Everyone is looking forward to all the camps coming up this month and next month and Stacey's and Sophie's birthdays too. Looks like a get together for Easter Sunday due to all the camps we have on every other weekend!! We'll also be going on the Camp Quality Sail to Moreton Bay on the South Passage schooner for the day - really excited about going sailing with the kids! Sophie is coping very well with Preschool, SEDU and Kindy - four days a week! Wow, she's social and happy and gorgeous! Luke is enjoying his three days at Junior Kindy and learning lots of new songs with actions! Stacey is breezing through Grade 3 and loves her Bratz Dolls - I can't believe she wants more of them for her birthday! Lots of love and prayers for Ashley, Samuel, Andrea and Aaron - Ashley is Sophie's brave little friend from Cairns - wish we could be closer! Enjoying the rainy days - Sophie's actually sleeping in until 6.30am instead of 5.00am! Love to all, Leanne UPDATE: 2-17-06 The school year has started well with everyone enjoying their new classrooms and teachers! Sophie is doing very well and told everyone at the hospital yesterday how great she was going! Our MRI is now updated to the 1st of March. Stacey and Sophie will both be going to camp this year - Stacey has sibling camp in March and Sophie goes to her first Junior Camp with Heather and is so looking forward to it! She goes on her birthday - so I know she will be spoilt and be the centre of attention the whole weekend! Luke is doing so well at Tiggers Place - Miss Sue says she wants all the little ones to be just like Luke. He comes home singing songs and doing all the actions - I'm impressed and actually did some video footage! Got a lot on at the moment and sorting through everything to hopefully find some order and then progress towards good things and positive changes. Love to all, Leanne UPDATE: 2-10-06 The school year has started well with everyone enjoying their new classrooms and teachers! Sophie is doing very well and told everyone at the hospital yesterday how great she was going! Our MRI is now updated to the 1st of March. Stacey and Sophie will both be going to camp this year - Stacey has sibling camp in March and Sophie goes to her first Junior Camp with Heather and is so looking forward to it! She goes on her birthday - so I know she will be spoilt and be the centre of attention the whole weekend! Luke is doing so well at Tiggers Place - Miss Sue says she wants all the little ones to be just like Luke. He comes home singing songs and doing all the actions - I'm impressed and actually did some video footage! Got a lot on at the moment and sorting through everything to hopefully find some order and then progress towards good things and positive changes. Love to all, Leanne UPDATE: 2-3-06 Sophie started Preschool today! She had the best time. Judy (vi.aide) stayed most of the day helping Sophie settle in and she really did enjoy herself. Luke and I did the shopping and he asked quite a few times where the girls where, but also answered his own questions! Sophie at Preschool, he told Nanny when she showed up before work and asked where Sophie was! Stacey is finding Grade 3 lots of fun and has just slotted in with everyone in her class with Miss Darvil. Thinking of taking up the violin - see how this works out - we are on 5 acres, so I can't see the noise being a problem while she is learning! And I coped well! I'm just glad we've made it this far to be able to have this milestone of Preschool attendance! Now I'm focusing on getting emotionally ready for that MRI - there's always a build up in the 2-3 weeks beforehand. We are booked in for the 22nd February. Had the most fantastic birthday ever!!!! Love, Leanne UPDATE: 1-20-06 Sophie is doing really well and gaining weight - we hit the 18.5kg mark last week! She is just so much fun to be around and has a wicked personality. Fun for her at the moment is imitating her kindy friends! She makes everyone laugh! Sophie starts Preschool on the 30th of January! Luke is just cute! He is extremely talkative and speaks beautifully for a two year old. He is enjoying kindy and goes into the Junior Kindy room when school goes back. Celebrating my birthday in style this year with a getaway weekend with someone special. Thank you Nanny and Poppy for babysitting! The kids are doing really well with sleepovers - it's good to have a short break from mummy. Busy getting uniforms and organising books this week, the hustle and bustle of school preparation will be a challenge and then all of a sudden we'll be in the swing of the new year and spending time together on weekends and having a blast. Some camps through Camp Quality will be some fun time for the kids - Stacey goes on sibling camp and Sophie tackles Junior Camp for the first time with her Companion Heather! The best New Year for everyone - wishing that the year be full of happiness and perfect health....Leanne UPDATE: 1-6-06 For me, this year has started better than any other I've ever had. Spent the most fantastic weekend in the best company possible and will cherish every moment. Christmas was great - we went up the coast and stayed up at the unit for three days and hit the beach everyday, frolicing in rock pools and building sandcastles. Then we went to Lone Pine and cuddled koalas and then home. Sophie is going extremely well and enjoying every day as we usually do, with gusto! We like to wake up early, put some music on - her favourite at the moment is Missy Higgins and we all know the words to most songs now! Or we have the radio on and dance in the kitchen! Stacey is enjoying her holidays and next week we have our first day together and will go indoor rock climbing. Luke is growing up too fast and loving all the trips to the beach - he is a true beach boy and with those blond curls, he looks the part - he is brown all over with a white bottom! It might be a bit hot, but we are loving Summer!!!!!! Only three weeks and back at school - so we'll be picking up books and uniforms shortly, celebrating Ella's 5th birthday, then Mummy's birthday and Stacey is enrolled in a sports programme the week before school starts for some fun! Love, Leanne ADDED: 2-17-05 Sophie is 4 years old!!!!!! Condition=SOPHIE HAS DIENCEPHALIC SYNDROME CAUSED BY BRAIN TUMOUR. SOPHIE IS LOOKING FORWARD TO HER FOURTH BIRTHDAY IN MARCH AFTER A VERY TOUGH 2004. .