History

Saturday, January 30, 2010

Hello again!!

Sorry for the lack of updates but things have been very busy in the Biddulph household recently!

Just a quick update to let you know that everything is well in our World. I don't know if anyone checks in on the website anymore, I wouldn't blame you if you had given up all hope of an update! If you are still there, please sign the guestbook to let us know you dropped by.

I have put a few new pic's on so that you can see how the girls are growing up. Nicole has now moved up to Guides and Lauren has started Brownies. Nicole is still enjoying playing the Piano, Performing Arts and is doing well at school.

The next big hurdle will be Secondary school this year. Nicole took her 11+ exams in November 2009 and gets her results on 1st March 2010. She has worked very hard and is aiming to be the first wheelchair user at Torquay Grammar School for Girls. If she doesn't make it, she will go to Westlands School. We are all pretty laid back about it as the thought of her going to Secondary school didn't even seem possible 5-6 years ago when she was so ill.

Thank you for your continued interest and support, we really appreciate it.

Wednesday, September 24, 2008

Hi all!

For those of you that have been following Nicole’s story from the start, you may have realised that it is 5 years this week, that things changed forever in the Biddulph family household. Nicole was diagnosed with Cancer, and paralysed for life, in the third week of September 2003. In some ways it is a milestone, because Cancer Research’s survival rates are based on 5 years from diagnosis, and thankfully over 70f children now make it this far. Whilst it does not give us any guarantees for the future, I don’t think any of us thought we would get this far, so we are thankful for that.

Nicole had an MRI scan 2 weeks ago in Exeter, and the results have been sent to Bristol for analysis. We haven’t heard anything yet, so we will take “no news as good news!” She will not be seeing her spinal surgeon in Frenchay again until next year.

The summer was fun and very busy despite the awful weather! Sara and I managed to take a short 4 night cruise break to Cork in Ireland on the Independence of the Seas in May. It was to celebrate our 10th wedding anniversary, and was Sara’s first real break from the girls in 9 years. Thank you to Nanny Rose, Auntie Tracy, Grandma and Auntie Andrea for rallying around, and taking good care of the girls!

In June we all went to Benidorm. It was a nice break, and the girls made some good friends at the kids club. The weather was fantastic, but probably too hot for Nicole, who spent much of the time inside making the most of the air conditioning! We did, however, enjoy trips to Mundomar, Aqualandia, and Benidorm Palace. In July we went back to Haven at Sandy Bay in Exmouth courtesy of Dream-A-Way, and had another good week, despite the British summer trying to put a dampener on things!

Race for Life back in May was a great success again, and Team Coley raised around Ł3,000, with the help of matched funding from Barclays. I am now working back in Torquay again, which is a relief after all of the travelling I was doing, and means I can help Sara out occasionally when she is stuck for the school run etc.

Now for the exciting news.........!

Nicole and Lauren will be making their TV debut next month. Earlier this year, we were contacted by Whizz Kids, to see if Nicole would be interested in auditioning for a new show called Lazytown Extra, a spin off of Lazytown. After an audition in Taunton earlier in the summer, they liked the girls, and we went up to The Garden Of Wales in Carmarthen, for the filming in August. They were allowed to take a friend each, Nicole chose Natasha from her class, who you can see in the picture on the previous journal, and Lauren chose Teoni from her class, who just happens to be Natasha’s younger sister! The filming went really well, and you can all see the show on Tuesday 7th October at 4pm on CBeebies. CBeebies is on freeview Channel 71, Sky Digital 614, or if you miss it or live abroad, catch it online on BBC iPlayer at http://www.bbc.co.uk/iplayer/search/?uri=/iplayer/tv/cbeebies&go=toolbar&q=lazytown The girls episode is called "Outdoor Games." Lauren is in the pink t-shirt, Nicole & Natasha are in Red, and Teoni is the small one in yellow!

Also next week, we are entertaining royalty…….!

Nicole has recently joined the Disabled Sailing Association (DSA), and they have a new boat which is being named and launched by Princess Anne, and Nicole & Lauren have been asked to present HRH with a flower posy, after the naming ceremony! The Patron of the DSA is Gemma Woodman, a newsreader from ITV Westcountry, so it is likely that the event will be televised!! We are not sure, but the launch is on Thursday 2nd October at 3pm, so if you are lucky enough to live in the West of England, look out for the ITV Westcountry news at 6pm on Thursday 2nd or Friday 3rd October. If you are checking in on us from further afield, you should be able to catch the coverage at http://www.itvlocal.com/westcountry/news/ and click on Latest News Bulletins on the right.

That’s about it for now. Thanks for stopping by, speak to you all again soon!

Allan, Sara, Nicole & Lauren xxxx

Sunday, April 6, 2008

Hello, we are still here!

I am not sure if the website is getting many visitors still. If you have been checking in, sincere apologies for the lack of updates! I guess that this is a good sign in many ways as Nicole is well, and we have been too busy enjoying life again to spend all day on the laptop!

Nicole’s scan results from December showed no evidence of any tumour regrowth, which was the best Christmas present we could have wished for. The Oncologists have told us that there is no need to have regular scans now, as they are happy that Nicole is in remission. However, Sara and I have decided that we would like occasional check ups, to ensure everything is in order. She will have another scan in September this year.

The appointment to see Nicole’s spinal surgeon at Frenchay was postponed, we are now seeing him on 15th April. It is only a routine check up, and we expect them to do an x-ray, to see how the spinal rods are holding up, and to check for any deterioration in her scoliosis. Generally she is very well, although both Nicole and Lauren are very tired, and in need of the half term break for the next 2 weeks!

Thank you to everyone who has sent the girls gifts over the last 6 months including Christmas and Easter. We have decided to take Nicole off the Postpals website, as she is doing so well, and there are so many other deserving children out there. Nicole was one of the original 4 Postpals, and they now have over 50 children who are ill or in hospital, many with life threatening illnesses. Check out their website at www.postpals.co.uk

Nicole continues to enjoy her performing arts group at school, and has taken part in several shows. She played the part of a wolf dancer at the Torbay Schools Festival of Performing Arts in February at the English Rivera Centre in Torquay. The Festival was on the same stage as the McFly concert, that Nicole went to last October! She also performed several songs from Oliver and Joseph at a fundraising event recently at our local church. Nicole continues to have piano lessons, and last month played “Daisy, Daisy,” and “Lavenders Blue” at a piano concert with other local children in Ashburton.

Next weekend, we are going to Riviera Bay Holiday Park in Brixham for a few nights. This will be the 3rd year running that we have been there, because the girls love it so much! We stay in a 2 bed chalet near the swimming pool, and in the evening, the girls enjoy the disco, entertainment, and characters. We were blessed with warm sunshine in April last year, and are hoping for the same again this year, although we have just had a few snow flurries outside, so the weather is going to have to pick up very quickly!

In May, Sara and I are going on a 4 night cruise from Southampton to Cork in Ireland. It is to celebrate our 10th wedding anniversary, which was on 24th March. It will be the first time that Sara has been away from the girls for more than 1 night, so she is a bit apprehensive, but hopefully she can relax enough to enjoy it! We will be going on a brand new ship called “Independence of the Seas.” In June we have a week booked in Benidorm with the girls. We haven’t done a “beach” holiday for a long time, but we are going with a company that specialises in special needs holidays, so hopefully we will be OK. In July we are returning to Haven Sandy Bay in Exmouth, as the girls enjoyed it so much last year.

I am still with Barclays, and have recently been promoted! It does mean I have to travel to work in Plymouth every day, but my new role should prove more challenging and rewarding. It does mean my time is now even more limited, hence the lack of updates to the website!

Next month Nicole, along with Team Coley, will be taking part in the Cancer Research Race for Life again in Paignton. In 2006 they raised Ł800, and in 2007 just over Ł4,000! This incredible figure was reached thanks to many generous sponsors, together with several large corporate donations. All of the money raised was then match funded by Barclays. Team Coley were one of the biggest fund raisers last year, and Cancer Research have asked Nicole to start this year’s race as a reward!

We are looking for your support again this year, and you can help by clicking on the “Just Giving” button at the top of the page to access Team Coley’s fund raising page. Barclays will once again match fund every penny raised, so your donation will be twice as valuable to Cancer Research UK!

We hope you all have a great summer, and thank you once again for your emotional and financial support and patience!!

Allan, Sara, Nicole & Lauren xxxx

Monday, October 22, 2007

Hello again!!

I thought it was about time for an update. I have now returned to work full time, and I am finding it increasingly difficult to find time to sit down and put the details down on record! Thank you for your patience. I hope the slideshow gave you a flavour of what we have been up to.

We had a great day at the Mobility Roadshow back in the summer. The weather held out for us, and Nicole helped to open the show by presenting a flower posy to Vicki Butler-Henderson of Channel 5’s Fifth Gear programme. Their were a lot of equipment and vehicles on show, and Nicole managed to have a go at some of the fun gadgets on display, including a Powertrike, which attaches to the front of a wheelchair, to turn it into an off-road mean machine! The highlight of the day was a flight in a private plane, over the roadshow, and across the river to Wales and back. The flight was arranged by Mandy from Fly2help.org, with another plane tracking our flight and taking some fantastic aerial shots of us in the plane and on the ground. Thank you Mandy for a wonderful experience. Nicole also got to play basketball with a member of Great Britain’s Women’s Basketball team.

For the first week of the summer holidays, we went to Haven at Sandy Bay in Exmouth, and stayed in an adapted caravan, courtesy of Dream-A-Way. Like most people, we suffered the brunt of the British summer, and despite a couple of reasonable days, the wind and rain did its best to spoil the fun. Despite this, we did manage a day out at Crealy, and a trip to the beach. Nicole & Lauren did make a couple of very good friends who were staying in the caravan next to us called Alice & Helena. They came over to play games in the caravan, and were inseparable at night for the party dances and disco!

Nanny and Auntie Tracy came to our house to stay at the beginning of August, and enjoyed some nice days out to Cockington and Trago Mills. As always, the girls just loved the company, and did their best to wear Nanny and Tracy out, before they returned home to Portland for a rest!

At the end of August, we had a weeks stay at “Toms Retreat,” at Hoborne Naish holiday park near Christchurch in Hampshire. This time we were much luckier with the weather, and managed to get out and about most days. We enjoyed trips to the beach, the indoor and outdoor pools, and the evening entertainment with Sammy Seahorse, Larry Lobster and friends! Highlights of the week included a trip to Paultons Park, where we met up with Nicole’s long time Postpal Liz Cook and her Mum. Liz has been writing to Nicole for nearly 4 years, and they came across from Brighton especially to meet up with us for the first time. It was a lovely surprise for Nicole & Lauren, and they had a great day together. We also met up with Stuart & Liz Knight, who live nearby in Hythe Southampton. Stuart & Liz are also regular Postpals, and came to meet us at the holiday park for a couple of hours.

The big event of September was Lauren starting school. She is at the same school as Nicole, and attended the school nursery last year. Lauren is enjoying school, but gets very tired by the end of the week! When the weather is fine, Sara tends to walk the girls to school, but they have to climb a big hill to get there. It is good exercise for them, and is often quicker than getting Nicole in and out of the car, and trying to find a suitable parking space! Sara is making the most of having a bit of peace and quiet at home, after a very tough 4 years since Nicole was diagnosed.

At the end of September, Sara and I went to a Country & Western wedding for our friends Dawn & Wayne. Earlier in the year, I enjoyed a stag weekend in Newcastle with Wayne, and Sara had a more relaxing weekend in Bath (nr. Bristol) with Dawn. It was a wedding to remember, with Cowboys, Indians, Saloon girls, and inflatable horses! The evening’s entertainment included a Hog Roast, Bucking Bronco, Line Dancing, Shooting Gallery, and Chocolate Fountain (I don’t remember them in the Wild West)! Unfortunately children weren’t allowed, so the girls didn’t get chance to experience it, but it gave Sara and I a chance to have a relaxing evening, and one or two drinks!!

As you may have seen from the photo above, October started with the McFly concert in Torquay! We managed to get backstage and meet them, and Nicole got all their autographs on the concert programme and some great pictures with the band. They were all really nice, especially Harry the drummer, who spent some time talking to Nicole. Miss Torbay also got to go backstage, and not surprisingly, the boy’s attention seemed to be focused on her! The concert was great, and Nicole sang along to all of the songs at the top of her voice, and had some great memories to share with her school friends in the morning.

Last week, Lauren had her harvest festival at school, and had a singing and dancing part in “The Harvest of the Sea.” I took the day off work to watch her, but unfortunately Nicole missed it, as she had her first swimming lesson at school. Lauren is continuing her swimming lessons on Saturday mornings, and is doing really well. She can now dive down to the bottom of the pool, and is learning her stroke techniques. Nicole is still enjoying her Brownies on a Tuesday night. The school has a performing arts group on a Thursday night. It used to clash with Brownies, but now they have moved it, Nicole is hoping to start her acting career! The school has a fashion show at the end of November, and Nicole has already put herself forward as a model!

This weekend, Liz Cook and her mum came down from Brighton to visit us at home. Liz is checking out Universities for next year, and went to look at Plymouth Uni. Unfortunately it wasn’t suitable, but they stayed with us for the weekend, and we had a lovely day out in Cockington yesterday. The girls kept them busy, and they have just left us for the long journey back to Brighton. It is half term this week in Torquay. I am making the most of my day off by updating the journal, but have to go back to work tomorrow :( . There is nothing else planned for the week, but the girls should be able to recharge their batteries, and have a good rest.

Health wise, Nicole continues to do well. She is now 3 ˝ years off treatment, and 4 years since diagnosis. We are waiting for a date for her 6 monthly MRI scan, and she has an appointment with her spinal surgeon in Bristol in January next year.

Lauren celebrates her 5th Birthday on 8th November, and I will be another year older on 6th November. Before we know it, it will be Christmas, and then 2008! Who knows what that will bring?!

Allan, Sara, Nicole & Lauren xxxx

Monday, July 16, 2007

Hi all!

Sorry for the long wait. It has been very busy in the Biddulph household!

Nicole completed the Cancer Research Race for Life in her wheelchair, with help from Mummy and "Team Coley." Despite terrible weather conditions, she completed the race in 58 minutes and with matched funding from Barclays, they raised over Ł4,000!! Despite claiming that the course was wheelchair friendly (only 2 people were foolish enough to attempt it in a wheelchair), it wasn’t so easy on a field, following a monsoon, at the back of 2000 women! Thank you to everyone for your support and donations, it is greatly appreciated.

She also enjoyed her trip to Dartmoor with her school and had a great time exploring the moors. She was the first child to stay at the Youth Hostel in a wheelchair. She enjoyed trips to the reservoir, Pennywell Farm, Dartmoor Visitor Centre, and the House of Marbles. She shared a room with 3 of her closest friends, and took part in nearly all of the activities, including toasting marshmallows on the fire! Her school carer went with her, but it was a big step in her independence to be away from home for 2 nights!!

Nicole had a great 8th Birthday on 14th June and would like to thank everyone for their gifts and lovely cards. She had a party with her friends at the local theatre and watched Peter Pan on Ice. Her favourite present was Singstar for the PS2. She is becoming quite the Diva, and knocks out a great "In Your Eyes" by Kylie!!

Yesterday we took part in a fundraising event for Team Sarcoma UK. It was part of many events around the World, to raise awareness of the effects and treatment of Sarcoma’s. Nicole’s tumour was a Fibro sarcoma (soft tissue cancer). It was great to meet other people who had been affected by the disease, and share experiences and give each other support. The main event of the weekend was an 8 mile walk from Brixham to Torquay, along the coastal path. Because of limited access, Nicole & I were only able to join the other 60 walkers half way through, but enjoyed being part of the day. Needless to say, it poured with rain most of the way, but it didn’t matter, everyone enjoyed themselves. (What is it with us and rain, when it comes to fundraising!?)

On Thursday, we are going to the Mobility Roadshow in Cirencester. It is the biggest event of its kind in Europe, and showcases vehicles, equipment and holidays for the disabled. Nicole was a case study for their “Ready, Willing & Mobile” competition, to encourage school children to think of equipment that could enhance a disabled child’s life. Thursday is children’s day, and there should be lots of fun events going on. Nicole has been asked to present a bouquet of flowers to Vicki Butler-Henderson from Channel 5’s Fifth Gear, who is going to open the show. We will also be taken up in a small 6 seater aircraft (weather permitting!) by Fly2help.org, who help people with disabilities experience the freedom & exhilaration of flying!

Last week, Nicole was quite ill. She was sick several times, and missed French Day at School, which she was gutted about, as they all dressed up in French costumes. Nicole was going to be a French artist, complete with stripy shirt and paint palette! She was off school for 2 days, but recovered in time for her cousin Tonitia’s 9th birthday party on Saturday and the Sarcoma walk on Sunday. She seemed to have picked up a bug at school, but it was a stark reminder of days gone by when Nicole was on treatment. However, she has had a good run. Sara and I cannot remember her being sick since she finished her treatment 3 years ago.

I am now working back at Barclays in Torquay, which is much better for all of us, as I am only 10 minutes from home. It used to take me over an hour to drive to Plymouth every day, which was a problem if I was ever needed urgently at home.

Next week we are off to Haven Holiday Park in Exmouth for a well earned rest thanks to Dream-A-Way children’s charity!

Until next time, enjoy the summer when it arrives, and stay healthy.

Love Allan, Sara, Nicole & Lauren xxxx

Friday, May 4, 2007

Hi all!

Thought I would just update you with some great news from Nicole’s recent trip to Exeter Hospital. She had her 6 monthly check-up a couple of weeks ago, and had all of her tests done on the same day. She had an Echo done on her heart, an Ultrasound of her kidneys, Blood tests, and photographs of her back taken to monitor its condition. She also had an MRI scan of her spine. Everything came back fine, and the MRI confirmed that there had been no change since her last scan, which is fantastic news. Nicole is now 3 years off treatment, and doing great!

The sponsorship for Race for Life on 13th May is going extremely well, and thanks to a couple of very generous donations, and everyone else’s kindness, we are set to smash our Ł1,000 target by some way!! Thank to you all of you who have supported “Team Coley,” if you would still like to make a donation, just click on the orange Donate Now button above, and input your details. Don’t forget, Barclays will match your donation Ł4Ł, which makes your sponsorship go even further!

On the 1st April, Nicole got to show off her skills on the piano, when she took part in a concert at Ashburton. She has only been learning for a couple of months, but had the confidence to get up on stage in front of nearly 100 people, and knock out a few tunes, including “Mary Had A Little Lamb,” “The Potato Song,” and a duet with her piano teacher. It was evidence of how much her confidence has grown over the last 12 months, and we were very proud of her. She has a keyboard to practice on at home, and learns on a piano at school. As you can see from the picture, she got her first taste of playing on a Baby Grand Piano, and sounded great!

Over the Easter Break, we went to the Riviera Bay Holiday Park in Brixham for 3 nights, with our friends Louise & Daniel, and their children Charlotte, Libby & Robert. The weather was fantastic, and the children had a great time at the Kids Clubs, and in the evenings with Party Dances, Bingo, Cabaret and Disco! Brixham is only 5 miles from our home, but once on the park, you could have been anywhere in the country. We also went out for the day to Brixham Harbour, and did the tourist thing by getting a bag of chips to munch on, whilst dodging the seagulls!!

That’s about all for now. Next weekend is the Race for Life, and towards the end of May is Nicole’s trip to Dartmoor. June is going to be a very busy month, with the highlight being Nicole’s 8th Birthday on the 14th June. Who would have thought it 3 ˝ years ago, when our lives were turned upside down! Long may it continue……..

Allan, Sara, Nicole & Lauren xxxx

Monday, March 19, 2007

Hello again!

As we hoped, the last couple of months have been a little bit quieter, following all the excitement around Christmas! Nicole is still enjoying her Brownies, and Lauren continues her swimming lessons, and is now able to swim unaided! The girls have been to a couple of Birthday parties, but apart from that, nothing very exciting has happened! I am still working down at Barclays in Plymouth, and have been busy studying for my Financial Advisors exam on my days off, to give myself an option for the future. Sara continues to run the home, and keep everything ticking along smoothly! She also celebrated her 34th Birthday on 19th February. Even half term was a quiet affair.

At the end of February, Nicole went to Teignmouth to collect a cheque for Ł90 which Moose International had raised for Whizz Kidz. Nicole is still one of the youngest ambassadors for Whizz Kidz in the UK, and we get involved with their fundraising whenever we can. The local paper came and took a photograph, and we all got our face on the front of the Teignmouth News!

I hope you like the new music on the homepage? Nicole felt it was time for something more upbeat, and chose the song herself. She wanted the McFly version of “Don’t Stop Me Now!”, but I was only able to get hold of the Queen version, which our friend Dan in the United States provided the code for (thanks again Dan!). It seems more appropriate at the moment, as Nicole is up for anything and everything!

The big news is that “Team Coley,” will be doing the Race for Life again this year on 13th May, at Clennon Valley in Paignton. Last year, with your help, we raised an amazing Ł800. This year, they are hoping to top that, and Nicole will be joined by Mummy, Grandma, Nanny, Auntie Andrea, and Cousin Tonitia. To help them reach their goal of Ł1,000, Barclays has agreed to match fund up to a maximum of Ł750, so every Ł10 raised with Gift Aid, will be worth Ł22.80 to Cancer Research!! Thank you for your help in 2006, if you are able to help again, please click on the orange “Donate Now” button on the home page, and help save more children’s lives like Nicole.

Nicole has also been asked to help the Mobility Roadshow, by being a case study for their “Ready, Willing & Mobile” competition, which is designed to get schoolchildren thinking about the difficulties disabled children face, and also what they might be able to do with the right equipment. More details can be found at their website www.mobilityroadshow.co.uk . We have been invited to attend the Roadshow on 19th July, and will hopefully get to meet inspirational Paralympian, Dame Tanni Grey-Thompson.

Last weekend, we went up onto Dartmoor, to check out the Youth Hostel at Bellever, where Nicole’s school are going for a 3 day, 2 night residential in May. The school asked us some time ago, if we would like Nicole to go, and of course the answer was yes! How could we leave her at school, while the rest of her class go off in the minibus for fun and adventure! Her school carer, Barbara will be going as well, and will deal with the majority of her care. We will need to go up on the Thursday, as the rest of the children will be doing a half day hike over the rougher terrain of Dartmoor. Nicole will be able to take part in most of the activities, but it wouldn’t be much fun for her, or anyone else, to drag her across the moors! The residential is a sort of “coming of age” for the 7-8 year olds, and will be the first time away from home for most of them. We felt strongly that it was an even bigger independence step for Nicole to take part, and will also be of help to Sara and me, to know that she can cope without us! According to the Ranger at the Youth Hostel, Nicole will be the first wheelchair user to stay there. They have a room downstairs with 2 sets of bunk beds, so Nicole should be able to share the experience with 3 of her friends, whilst the rest of the group will sleep upstairs. The trip includes visits to Pennywell Farm, Dartmoor Visitors Centre, The House of Marbles, and several stops on the way home, to track the path of the River Dart.

A couple of weeks ago, we took the girls to Crealy Adventure Park near Exeter. It is their favourite place to go, and the Managing Director, Angela, was kind enough to give us family VIP memberships for 2007! The park includes a Log Flume, Roller Coaster, Bumper Boats, Massive Indoor Play Areas, and is also a working farm, with barns to pet and feed the animals. It is well worth a visit if you are in the area, as you can see from the photos, the girls really enjoyed themselves!

Have you seen the new drama on CBBC called Desperado’s, about a wheelchair basketball team. Nicole is enjoying watching it, and it is good to see kids in wheelchairs getting some airtime on TV. It is on the CBBC Channel on Wednesdays at 5.30pm. Why not check it out!

Health wise, Nicole is doing great. We have just started her on a new medicine called Tolterodine. It is supposed to relax her bladder, to keep her dry between catheters. We tried a similar medicine some time ago called Oxybutinin, but it had the side effect of a dry mouth, and Nicole found it hard to swallow any food. Needless to say, to avoid her starving to death, we took her off that! Hopefully we will have more luck with this new medicine, as we strive to get her out of nappies.

We have also had some success with getting improvements done at Nicole’s school. After 2 years of trying, they have just got agreement to provide a purpose built physiotherapy room, and separate shower and toileting room. This should make things easier for Nicole and her carer, and will future proof the school for any special needs children who would like to attend Shiphay School. It will all help to increase Nicole’s independence as she approaches secondary school (which will be here before we know it)! The school have integrated it into a much larger plan which will cost around Ł700k. They hope to complete the building works within the next 6 months.

Thanks for your ongoing support. Don’t forget to sponsor “Team Coley” if you are able to. Take care, I will update again in a month or so.

Allan, Sara, Nicole & Lauren xxxx

Tuesday, January 9, 2007

Wow it’s 2007 already! A Happy and Healthy New Year to you all!!

We have been busy since we last spoke! You may have guessed from the new photographs and slide show, that the 2 exciting events I hinted at in the last journal where a trip to Walt Disney World in Florida just before Christmas, and on 2 Jan. 07, Kylie Minogue’s Showgirl Homecoming Tour at Wembley Arena in London!!

I didn’t mention the Florida trip before, because of the security risk of leaving the house empty just before Christmas (you never know who is reading this!). We were away from 5th – 22nd December, so had to be very organised for Christmas this year. Sara had all of the presents bought and wrapped before the end of November! The Christmas Tree also went up early, so that we didn’t have to do it when we came home.

We stayed in the villa owned by The Christian Lewis Trust in Kissimmee. Thanks once again to Barbara and everyone at the CLT for their help in making it happen. My sister Andrea, and Cousin Tonitia came, along with Grandma and Grandpa Pete. We flew on Virgin Airways. It was great to able to return to Florida, after our previous visit 2 years ago. Nicole was stronger, and Lauren that little bit older, that they were able to enjoy it all the more. It is the perfect holiday for Nicole, with lots to see and do in her wheelchair. We were also a little more adventurous with what rides Nicole was able to go on. We are always careful, and aware that her spinal rods are a risk, but she was keen to try some bigger rides this time. Favourites included Splash Mountain, and 3 rollercoaster’s - Woody Woodpecker, The Flying Unicorn, and Goofy’s Barnstormer! All of these had to ridden 6 or 7 times of course!!

In total, we did 11 parks in 13 days! This included Animal Kingdom, EPCOT, MGM Studios, Universal Studios, Universal Islands of Adventure, Typhoon Lagoon, Downtown Disney & Disney Quest, and 4 visits to the Magic Kingdom! It was great being there just before Christmas, as all of the Parades, Shows, Music and events had a Holiday theme. We didn’t get chance to visit Sea World this time, but did get to go back and spend a day at Give Kids The World, the village for special children in Kissimmee that we spent a week at last time. We felt lucky to be able to return to GKTW, as many children who stay there don’t get a second chance.

Highlights included Seuss Landing in Universal Studios with Cat in the Hat and all his friends, the Osborne Family Spectacle of Lights at MGM Studios, Mickey’s Very Merry Christmas Party at the Magic Kingdom, and all of the parades and shows. Lauren, of course, wanted to go on everything that she was tall enough for, and also all of the rides that she wasn’t! She gave Mummy heart attacks flying around on roller coaster’s with her arms in the air!!

We also managed to view the night time Space Shuttle launch from a distance. We were in GKTW when it went up (around 60 miles away), but still managed to be part of this historic event. The whole sky turned orange, and within seconds, it was just a small shooting star, as it made its way up into space.

I won’t list everything that we did, because hopefully the pictures in the slideshow will tell their own story. Needless to say, we all had a fabulous time, and came back shattered, right on top of Christmas! The only disappointing thing about the trip was that while we were away, Gill, the daughter of Nicole’s carer at school, got married. We would love to have been there, but who gets married in the middle of winter!? Nevertheless, they had a great wedding, and we wish Gill and Tim all the best for the future.

As mentioned in my previous update, the Daily Mirror ran a feature on 15th December, which included Nicole’s story. Luckily our family got hold of a copy whilst we were away. I don’t know if any of you saw it? If not, you can read the article HERE. We were also supposed to have been on GMTV this morning, but it would have meant an overnight in London, and being at the studio for 5.00am! If it had been last week, we could have done it, as we were in London for the Kylie Concert. It would have been to promote the Cancer Research Little Star Awards, which have just been launched for this year. The awards are for any child that has battled with Cancer, and if you would like to nominate your own child, or somebody else’s child, click HERE. Of course Nicole won an Award last year, and that led to her being chosen for the Christmas Catalogue, so who knows, the child that you nominate, could be a cover star like Nicole by the end of this year!!

Christmas seemed to flash past, as we were still recovering from the holiday. As usual, the girls got far too many presents! Thank you to everyone at Postpals that sent gifts. Hopefully in the next couple of days, I will get personal replies and photos to all of you. The girl’s main present was tickets to the Kylie concert. Nicole also had Super Mario Bros for her Nintendo DS, and Lauren had a Wicker Basket for all of her dressing up clothes. They also had Scalextric, and Donkey Konga with Bongo’s for the Gamecube, which is a good laugh! On New Years Eve, we went to our friends Carole & Shaun’s house, and had a good evening with their family playing Buzz Music Quiz on the Playstation. We were home by midnight though, so that the girls weren’t too tired for the concert on the 2nd Jan.

The Kylie concert was great! Nicole has always been a fan of Kylie, but when she got Cancer, I think it helped Nicole, because she realised that they had something in common, and that it can happen to anyone. We were hoping that Nicole would get to meet Kylie before the show, and Cancer Research tried to contact her people, but weren’t able to arrange anything. I would imagine that there would have been enormous demands on her time from the Wish Charities etc. We did take a copy of the Cancer Research Catalogue with us, and the head of security said he would get it to Kylie’s dressing room! I hope she did get to see it, as Nicole was very excited that she may get to read about her. In a way, I thought it might help Kylie to know what Nicole has been through. If anybody is reading this, and can make the meeting happen, please get in contact with us!! We were sat fairly near the front, and had a great view of the show. Nicole made a sign saying “Kylie We Love You!” and waved it every time she came over to our side of the arena, and on a couple of occasions got a little wave!

I am back to work now; still part time 3 days a week at Barclays in Plymouth, and the girls have gone back to school and nursery. Nicole has started to learn the Recorder, and will be starting Piano lessons this week. Lauren will restart her swimming lessons, and should be out of armbands and float suits pretty soon! Brownies starts again tonight for Nicole, which she is still enjoying. She has now been fully enrolled as a brownie, and is very proud of her badges (see photos).

On the health front, there isn’t much to report since last time, thank goodness. She has an appointment to see the Oncologist and Urologist this Friday at Exeter, and hopefully these will just be for routine check ups. Our little friend Megan has had a rough Christmas, and Nicole D is still going through chemo. If you get chance, pay them a visit by clicking on the links below.

Until next time, have a great New Year, and we are looking forward to a quiet couple of months!!

Allan, Sara, Nicole & Lauren xxxx

Friday, November 17, 2006

Hello again!

We have had a busy month so far with hospital visits, but it has all been good news! We took Nicole to Exeter at the beginning of the month for an MRI scan, and we have just heard from her Oncologist, that everything is stable, and there has been no change since the last scan in April. This is fantastic news, and we can relax again now until the next one in Spring 2007!

We also went to Frenchay hospital in Bristol this week, to see Nicole’s Spinal Surgeon, and he took an x-ray of the rods in her back. He is very happy with the condition of them, and unless we have any problems, we won’t need to see him again until January 2008! He did consider taking them out all together, to allow her spine to grow, but he said that he didn’t know how strong her back would be until they were removed! Needless to say, we agreed to leave them well alone, and review the position in a couple of years. Again, fantastic news.

As mentioned in my previous update, Nicole didn’t make it to the final of the Pride of Britain Awards, but we all enjoyed watching it on TV, and Nicole was pleased for all of the winners, especially the children. She was a little bit jealous though, that the young girl got to meet Kylie!

Nicole has recently started Brownies, and is really enjoying it. Most of the Brownies are from her school, so she knows a lot of them already. We think it will be great for her social skills, and will help her to develop her confidence and independence even further. The only downside, is that it coincides with her hydrotherapy sessions, so she has had to give that up, although we do try and go swimming once a week, at our local health club.

The girls had a nice rest during October half term, and we didn’t really do much. Nicole did have a 2 day wheelchair skills course, and because she is getting very adept at using her chair, she enjoyed showing off her skills to the new children, to show them what is possible with a lot of practice!

Nicole & Lauren didn’t go “Trick or Treating” this year, but as Halloween was a non-pupil day at school, they dressed up as Fairy Pumpkin Princesses, and played games at home with Mummy. Check out the photo’s page to see the girls in all their gear!

November is a very busy month in the Biddulph household for Birthdays! I was 38 on the 6th November, my sister Andrea was 37 on the 7th, and Lauren was 4 on the 8th. It is also the time when most of Laurens friends at nursery have their Birthdays, so we have had parties most weekends! Lauren had her party at the “Yellow Submarine,” a play area at a local hotel, with 13 of her friends from nursery. It is the first really big party we have thrown for Lauren, and I think she relished being the centre of attention for a change! Thank you to everyone for your presents, especially our friends at Postpals. We appreciate you including Lauren in your thoughts, as she sees Nicole getting post nearly everyday, and sometimes feels left out! Her main present was a bike and a Barbie helmet.

On the 4th November we went to a fireworks party at our friend Clive’s house, with about 40 other people. Clive always builds a great bonfire, and sets off loads of fireworks. The girls seemed to enjoy them much more this year, and didn’t run off and hide indoors! On Tuesday, Nicole went to see Grease the musical with her cousin Tonitia, Auntie Andrea, and Grandma, at the Princess Theatre Torquay, and really enjoyed the show.

Cancer Research have had a great response to the Christmas Catalogue with Nicole on the front, and this week, Nicole’s story appeared in the local Herald Express newspaper, and she was on the front page of the Torbay Weekender, the weekly free newspaper, delivered to 43,000 homes in Torbay. So if anyone in Torbay hasn’t heard of Nicole yet, they have now!! We have also been approached by the Daily Mirror newspaper, and Nicole will be featured in an article about children appearing on Charity catalogues, cards etc. The article is scheduled to be in the paper on 15th December, although this may change.

We have 2 very exciting events lined up just before and after Christmas, but I can’t tell you exactly what yet, so I will have to keep you waiting! I will reveal all around Christmas time. I have updated the photos page, but will leave the homepage as it is for the moment, as we are approaching the festive season! Thank you for your ongoing support, and if we don’t speak to you before, have a great Christmas, and more importantly, a Happy and Healthy New Year!

Love from Allan, Sara, Nicole & Lauren xxxx

Friday, September 22, 2006

(Sat 03/09/06) Hi all.

Just a quick note to let you know that we have just heard from the Pride of Britain Awards, and Nicole hasn't made it through to the awards night. The panel were all impressed by Nicole's bravery, but they were not able to recognise all of the nominees. Nicole is still our "Pride of Torquay!" and was fine with the news, and just said "It will be nice for the other children that win!"

Wow! Another 2 months has passed by. About time for an update!

It is quite an appropriate time to bring you all up to date, as it is almost 3 years to the day since the MRI scan that changed our lives forever, the MRI scan that diagnosed our 4 year old daughter with Cancer. 3 years of highs & lows, tears & laughter. Who would have believed at the time, that we would make it this far and Nicole would look as gorgeous as she does on the front cover of Cancer Research’s Christmas Catalogue!! We are so proud of her, and would encourage you to order a copy of the catalogue, by clicking on the link above. It could become a collector’s item! Please place your order before Christmas, and help more children (and adults) like Nicole survive and prosper.

I have also put a selection of photos on a new slide show above, and hope you like it. We don’t like looking backwards, but sometimes it is necessary, to see how far Nicole has come. I will try and update these periodically, as we have so many pictures to share with you, and Caringbridge only allow a maximum of 4!

The girls are back at school and nursery now, but we had a very busy summer break. Nanny and Auntie Tracy came down from Portland to visit for a week, and we all went to Haven Holiday Park in Weymouth for a week mid August. Nicole & Lauren had a great time at the Kids Clubs, and dancing away with Rory the Tiger, and Bradley Bear in the evening disco with party dances. We also went to Chickerell and Weymouth carnivals during the week, and the girls went on all the rides, enjoyed the Red Arrows display, and the carnival procession with all of the floats. Nicole wanted to catch up with a friend she made last year at nearby Littlesea Holiday Park in Weymouth, so we visited Hayley and her Mum, Dad and Brother Adam one afternoon.

Also in August, Sara and I hosted an 80’s party in our garden, with suitable music and fancy dress. I was Magnum PI and Sara was an 80’s Disco Diva! We also had Rambo, Madonna, Freddie Mercury, and Don Johnson as guests! The weather was fine, and luckily both girls slept through it all!

The big event in September was the South Devon Community Awards. You may remember that Nicole won her category as “Child in the Face of Adversity,” at last years awards. This year, we nominated her school carer, Barbara, in the categories of “Carer of the Year,” “Making a Difference in the Community,” and “Education Worker of the Year.” Barbara deals with all aspects of Nicole’s care, physical and emotional needs at school, and has been a big influence on her settling into mainstream school, and her positive outlook on life. Barbara has had a tough time over the last few years, but has always put others first. She worked in Care Homes when she was young, has worked with a number of special needs children, and has fostered over 25 children! Needless to say, we were absolutely delighted when she won the category of “Carer of the Year,” and you had to pick us all up off the floor, when she was announced as the overall winner on the night!! Nicole also got to go up on stage, as she presented this year’s child award to a lovely young lad called Liam, who suffers from Severe Eczema, and Cerebral Palsy. The evening went on until around 1.00am, and Nicole wore everybody out on the dance floor!!

(Barbara & Nicole)

We have nominated Nicole for a Pride of Britain Award, organised by ITV, the Daily Mirror, and GMTV. She is in the “Children of Courage” category, and we nominated her for the bravery she has shown throughout her treatment and the way that she deals with her disability. She has also done a lot of fundraising and profile-raising this year, for Whizz Kidz, Cancer Research, CLIC Sargent and Postpals. A lovely lady called Ciara came down from Granada TV in London to visit Nicole a couple of weeks ago, and we are now waiting to hear if she was successful. All the nominees will be assessed by a celebratory panel, including Richard Branson, and if she is recognised by the awards, she will get to go to the awards ceremony in London on 6th November. It would be wonderful for her to receive such an accolade, so fingers crossed!

On the subject of Awards, Postpals is in the running for a Lottery Grant to continue their wonderful work. Many of you will know that Nicole was one of the first 4 Postpals, and appears on much of their promotional literature. There are now over 50 children on Postpals, and the service they provide helps many children and their siblings through months, and sometimes years, of hospital visits. Vikki George, who co founded Postpals with Kat Ramsey, is hoping to be at the results announcement which will be live on the National Lottery show tomorrow night (Sat. 23 Sept 06), before and after Casualty. Vikki and Kat are both unwell themselves, and suffer from M.E. and other related conditions, so good luck to them. We will be watching, Will you?!

Nicole’s next visit to Bristol will be in November, so I will update again before then. Please don’t forget to sign the guestbook before you go, we would be delighted to know that you have stopped by!!

Take care, Allan, Sara Nicole & Lauren xxxx

Tuesday, July 11, 2006

Hi all!

As promised and long overdue, here is the update you have all been waiting for. Thanks for your patience!!

Nicole is well, and enjoying the last few weeks of school before the summer holidays. The MRI scan came back all clear, so we can relax now until November time when the next scan is due. She has just finished a 6 week course of Ranitidine. She was suffering from bad stomach pain, which was worrying us, but the medicine seems to have done the trick. It looks like it was just a bad case of indigestion, probably caused by sitting down for much of the day.

Nicole has also been to Bristol for more botox injections in her legs, and also to see her spinal surgeon at Frenchay. He is happy with the rods in her back, and will x-ray her again in November when we go up for the MRI. We have now got a combined shower / commode chair, which means one less piece of equipment in the house! This enables us to do Nicole's catheter and suppository over the toilet, and then chuck her in the shower to hose her off!!

At the end of May, we had Nicole's Make-A-Wish trip to London. We had a fabulous time, staying at the Hilton Hotel, with 1st class rail travel up to the capital. On the Thursday night, we went to see the Lion King show at the Lyceum, which both of the girls really enjoyed. On Friday, we went to Madame Tussards in the morning, The Rainforest Cafe for lunch, and then for a flight on The London Eye in the afternoon. The girls had a great day, and enjoyed spotting all of the famous places from the top of The London Eye. We then headed back to the Hotel, in our chauffeur driven stretch limousine!!

(Flight on the "London Eye" - Nicole's Make-A-Wish trip to London!)

On Saturday we went to The Science Museum in the morning, and then to Hamleys Toy Store after lunch to do some shopping! We would have liked to look around the other shops in Oxford Street, but the weather was really bad, so we headed back to the Hotel. On the Sunday, we spent most of the day at London Zoo, before heading back to Paddington for the train home. Thank you to Joanne and all at Make-A Wish for a fantastic few days, that we will never forget.

There is a slideshow of the wish trip set to music, which you can download by clicking on the photo on the homepage. If you don't have broadband, and would like to see the show, please let me know, and I will lend you a hard copy on CD. Thanks to Jenna's Dad, Dan Marcella, for hosting the show for me.

June was a really busy month, with the highlight being Nicole's 7th Birthday Pyjama Party! We also went to see Snow White on Ice at the theatre, which the girls really enjoyed, and had the School Summer Faire, a Wedding Reception, Fathers Day, Skittles Finals Day for me, several Birthdays, and the Race for Life!!

The Race for Life on 11th June went well. 2000 women took part, and Nicole, Mummy and Grandma managed to complete the 5k course in just under an hour. Nicole was just 1 of 2 people who took part in their wheelchairs, and she got a mention and a cheer from local radio station Gemini FM. Grandma took part despite breaking her wrist in Ibiza the week before! She nearly had to pull out, but decided to go ahead, so that she could collect all the sponsorship money that she had raised. In total, Team Coley raised over Ł800, and we would like to thank everyone who sponsored them for this very worthy cause. Nicole ran in memory of Jamie, David, and Katie. 3 children we got to know, who sadly lost their battles with Cancer last year. Your money will help Cancer Research in their battle to cure more children of this dreadful illness.

(Race for Life finish with Tonitia, Grandma & Mummy!)

Nicole's 7th Birthday was on the 14th June, and her party was on Friday 16th. Every Birthday is now a landmark for us, and another step away from diagnosis and treatment. We remember celebrating her 5th Birthday, as if it would be her last, and pray that she will celebrate many more Birthdays to come. It was a real girlie party, with 12 of her friends from school. We had it at home this year, and we were very lucky with the weather. The theme was a Pyjama Party, and all of the girls came dressed in night wear. Our friend Yvonne painted the girls nails for them, and her daughter Kate did their faces. We also had bubbles, and made origami party crowns, followed by a party tea on the decking. Luckily everybody's parents picked them up after tea, so we didn't have a mass sleepover!!

(The girls enjoy Nicole's 7th Birthday Pyjama Party!)

Thank you also to everyone at Postpals, who sent Nicole some lovely Birthday presents and cards.

On 24th June, we went to Tesco in Newton Abbot, to help The Round Table and Moose International, with their fundraising for Whizz Kidz. Nicole and Lauren got to shake their collecting tins, and give out stickers to donors. Whizz Kidz is Tesco's charity of the year, and for one weekend every year, they allow people to collect funds from outside their stores. They are hoping to raise Ł1.5 million, to clear Whizz Kidz waiting list of 400 children!! Nicole's powered chair was funded in full by the charity, but she had to wait over 18 months for it, so if you are in Tesco's this week, drop a few coins in the collecting tins!

A few weeks ago, we went to Teignmouth to see Angel Jamie's Mum Kelly, and her new baby Amy Grace. Amy was born on 14th June 2006, so shares Nicole's birthday!! She is beautiful, and a precious gift to Kelly, Dave and Charlie after all they have been through. Check out the gorgeous photo of Nicole and Amy on the photos page, and to find out more about Jamie's journey, click on the link below.

Nicole has a school trip to Stover Park tomorrow, where they are going pond dipping! Lauren is also off on a trip to the beach. On Thursday, Nicole has her School sports day, and is taking part in the skipping race(should be interesting!) Unfortunately I will miss it, as I am at work, but hopefully Mummy will take some video and photos for me.

It is Abigail's Bratz birthday party on Friday, Tonitia's swimming party on Saturday, so should be another busy week!! Last week of school next week, then 6 weeks off.

Until next time, enjoy yourselves, and take care.

Allan, Sara, Nicole & Lauren Biddulph xxxx

Saturday, June 17, 2006

Hi everyone!

Sorry for the lack of updates, but there is so much happening at the moment. When I get time, I will give you a full update, but it might be a long one!

Work is going well, Nicole's Birthday & party were fab, The Race for Life was great, and everything is good health wise, so don't panic, we are all good! Thanks for all your presents, and messages of support.

Speak soon, Allan xxx

Monday, May 8, 2006

Hello again!

I am back to work tomorrow, so thought I would give you an update, as time will be even more precious from now on!! I will still try and get a journal done every month for you, and thank you for your continued interest in Nicole’s condition.

We still haven’t had a firm report from the recent MRI scan, as the pictures have been sent to Bristol, to compare to the previous scans. However, our Oncologist in Exeter has told us that there doesn’t appear to be any problem with them, and we will assume that “No news is good news!” Nicole is now 2 years off active treatment, and so a clear scan will be very good news at this stage.

The photo shoot at Bristol for the Cancer Research Catalogue went really well, and Nicole was treated like the star she is! She had her own dressing room with her name on it, and had chocolate eggs and bunnies to munch on. The finished picture will show her holding up a present, and looking at the lights on the Christmas tree. It was a bit confusing though, as they digitally add the Christmas tree and background afterwards! She really enjoyed the day, and we can’t wait to see the finished picture.

The Hi-5 concert was fab, and Nicole was very nervous, but excited to meet them all afterwards. Kathleen wasn’t there as she is having a baby, but Tim, Charlie, Nathan & Kelly all came out to see her, and gave her a t-shirt, stickers, and a signed poster. The local paper was also there to cover the story, and took her picture. You can read the article HERE.

Nicole gets to meet Hi-5!!

We were also delighted when Nathan & Kellie signed her guestbook, after their show in Liverpool. They must be asked to do this sort of thing all the time, but they made Nicole feel really special, and took the time to look at her website, so thank you to all of them and their management for making Nicole’s Easter!

Lauren and Mummy also went to see the Fimbles last week, although they didn’t get to meet them, despite Mummy’s pleading!!

We had a good week at the holiday park in Brixham. We had to change chalets when we got there, as their interpretation of disabled access was not the same as ours (a 45 degree ramp, and 1 bedroom for the 4 of us!!) It is a problem we often face, and whilst we always try and be constructive with our feedback, no-one seems to be interested! I think it will be some time before we get anywhere near suitable accommodation.

However, the girls enjoyed the Musketeers club, the Bingo, and the shows with “Morris Minor.” It was a funny feeling going back to the park, as we were there the weekend before Nicole was diagnosed in 2003, and she was active then. This time we had to bump her down 2 flights of stairs, just to get her to the dance floor. During the week, we went to Paignton Zoo for the day, to the cinema to see Ice Age 2, and spent a day going along the seafront at Goodrington, followed by a pub lunch and a visit to Wacky Warehouse play area for the girls.

Sara and I have just come back from a weekend for parents of children with physical difficulties. It was a very informative weekend, and gave us the opportunity to meet lots of other parents in a similar situation to ourselves. There were several workshops over the 2 days, and plenty of opportunity to share the highs and lows of the past 2 ˝ years. We met some lovely people, and it gave us a much needed break from the girls. We did miss them, but they had a great time at home. Thank you to Nanny, Grandma, and Auntie Tracy for babysitting!!

The sponsorship for Nicole’s “Race For Life” for Cancer Research on 11th June is going well, and we have had a couple of very generous donations recently, including an anonymous one for Ł100! Thank you, whoever you are, and to everyone else for your kind pledges.

We are now looking forward to Nicole’s wish trip to London at the end of May, and will be seeing the spinal surgeon at Bristol (Frenchay) in June. Nicole will need more Botox injections soon, and we will try and tie this in with the visit to Frenchay.

Until then, stay safe, and enjoy yourselves!

Allan, Sara, Nicole & Lauren Biddulph xxxx

Friday, April 14, 2006

Hi all!

Just a quick update for you.

As you can see from the pictures, Nicole has done her photo shoot for Cancer Research in Bristol this week. She was chosen as the face of their 2006 Christmas Catalogue. We will get a proof copy in the next few weeks, and in August, around 1/2 million copies will be rolling off the press, with her beaming face on them!! You will be able to order a copy from the Cancer Research website, and I will let you know when they are available. Hopefully, you will be able to make a few purchases as well, to help more children like Nicole beat Cancer!?

(Nicole chats to the photographer at the photo shoot for the cover of the Cancer Research Xmas Catalogue 2006!)

Yesterday, we went to Exeter for the 6 monthly MRI Scan. It was the first time we have had one in Exeter, so Nicole was a bit apprehensive, but the Radiographers were really nice, and helped her relax. Because it is her first scan at Exeter, we will have to wait a couple of weeks for the results, as they will have to get copies of the previous scans from Bristol to compare them to. I will of course let you know the results as soon as we have them.

Next Monday we are seeing Hi-5 at the theatre, and Nicole will meet them after the show! We will then be staying at Riviera Bay Holiday Park in Brixham for the week. It is only 7 miles away, so will be handy if we forget something!! I will do a fuller update when we return, and the girls are back at school.

Happy Easter to you all, and thank you for all of the lovely gifts and letters that you have sent to the girls!

Allan, Sara, Nicole & Lauren xxxx

Monday, March 13, 2006

Hello again!

Sorry for the delay, but we have been reeeeaaallllyyyy busy, as you are about to find out! Thank you for your patience, and I hope you enjoy the update!!

First and foremost, Nicole is well at the moment. She was complaining of pains in her back last week, but that seems to have subsided. It is always a worry, because her spine is held together with titanium rods! Our spinal specialist has postponed our appointment at Frenchay Hospital again. It has been changed from March, to April, and now to June! It is only a routine check-up, but if Nicole has any further problems, we will have to push to see him earlier.

The back brace has arrived from Salisbury, and we need to build up the time that Nicole wears it day by day. The plan is for her to wear it for most of the day eventually, but it is not the most comfortable thing to wear, so we will have to build her up slowly. It is designed to hold her back straight in sitting or standing, and to even up the muscles in her trunk.

The suppositories are working fairly well, and she is able to clear her bowel most evenings. We are just waiting for a new shower chair, which also acts as a commode chair to go over the toilet, but have to wait until Social Services get their new budget in April! She has had the odd accident, but it is a big improvement from how it used to be. We will have to look again at bladder control in the next few months, but will tackle the back brace first. There always seems to be something new to deal with all the time!!

Nicole has also started standing in her frame without her leg callipers. This will help avoid pressure marking from her callipers, and will save a lot of time at home and at school, taking them on and off! We have not had a date through for her next MRI scan, but expect it to be in April or May at Exeter.

Lauren is fine apart from a persistent cough. She is really enjoying nursery, and feels like a big girl now, because the nursery is attached to Nicole’s school. We all walk up to the school together, Nicole in her new power chair and Lauren with her Winnie the Pooh lunchbox in hand! She goes on Monday mornings, and all day Wednesday and Thursday.

As I briefly mentioned in the previous update, the girls made their TV debut during half term, on Westcountry Live News! We went to Tesco’s in Ivybridge (Lee Mill), to help launch their fundraising initiative with Whizz Kids, who are their charity of the year. Tesco’s hope to clear Whizz Kids waiting list of over 300 children, and aim to raise Ł1.5 million! It is a very worthwhile cause, as Nicole had to wait 18 months for her power chair, and it would be great to see more children get their much needed equipment sooner. So if you pop into Tesco’s this year, put a few coins in the tins, and you will be helping children like Nicole to get mobile, thank you!

Nicole and Lauren had to take part in a “Supermarket Sweep” type game, where they had to collect stars from the aisles. Nicole grabbed the stars, and handed them to Lauren to hold. They raced against another young lad called Joshua and his sister, who Whizz Kids have also helped. Afterwards, two of the staff from Tesco’s tried the task in manual wheelchairs, to show how difficult it was! The race was started by local MP Gary Streeter, and Nicole got Ł20 to spend in the shop as a thank you. She used it to buy Nanny McPhee on DVD.

It was a busy half term, because we also went down to the local radio station, Gemini FM, to see how the programmes were made. We had to be at the studio at 7.30am, to meet Chris Edgecombe (Edgey in the Morning), during his breakfast show. Nicole was a bit too shy to speak live on air, but Edgey interviewed me a few times, to talk about Nicole and all the fun things she has been getting up to! Thank you to Edgey for an enjoyable morning and for the CD, Mug and Foam Hand that Nicole got to take home!

In February, we took delivery of our new Wheelchair accessible car. Well I say a car, but it is a VW Transporter (a van!), because we have so much equipment to carry! We are getting used to driving it now, but Sara has found it a big step up from her old Rover Metro!! We have knocked down a pillar on our driveway, to give us more room, and before we knock it down ourselves with the Van! Nicole likes it, and is able to drive her power chair straight into it via a fold down ramp at the back, and can travel in her chair, as it is clamped into the vehicle. It has tinted windows in the back, to keep the girls cool in the summer, but has caused confusion when they wave to family and friends, and get totally ignored because nobody can see them!!

Also in February, Nicole enjoyed a school trip to a local attraction called Bygones. It has a Victorian Street, with shops made up as they would be in Victorian times, and the children all got to dress up in Victorian costumes. They are studying this period in school at the moment, and Nicole often comes home with tales of how things were in “Victorian Times!”

At the end of half term, Nicole went to see Starlight Express in Torquay with Cousin Tonitia, and Grandma and Grandpa, which she really enjoyed. She is spending a lot of time at the theatre recently, and is going again on Friday to see The Jungle Book. It is not the Disney version, so not sure what to expect. On Easter Monday, Nicole’s favourite group Hi-5 from Australia will be performing in Torquay! Hi-5 consists of 3 girls and 2 boys, and they perform songs, dances, activities and stories. They are on several different children’s TV channels in the UK, including Milkshake in the mornings on Channel 5. Nicole also owns all 8 DVD’s that they have issued, and is mad on them! Her favourite is Charli. I contacted the theatre to ask if it would be possible for Nicole to meet them after the show, and they said yes!!!!

On Sunday, Nicole has been asked by Moose International to start a fun run in Plymouth, to raise funds for Whizz kids. Moose have also made Whizz kids their charity of the year, and have over 300 runners taking part, and hope to raise over Ł1,000. They want Nicole to start the race, and to present the medals to all of the finishers. It is another fun thing for Nicole to do, and it is great to be able to give something back to the people who have helped us.

In June, Nicole will be doing a fun run of her own, when she takes part in Cancer Researches “Race For Life” in Paignton. She will be racing with Mummy and Grandma, and will be raising funds for vital research into Cancer treatments, to enable more children like herself to battle and survive this terrible disease. I hope that some of you will be kind enough to sponsor her, and I will email out her Race for Life sponsorship page to all of you, and put a link to it on her website shortly.

You may remember in my previous journal that Nicole won a Little Star Award from Cancer Research. Well last week, we had a phone call from their Head Office, and they have chosen Nicole out of all the Little Stars in the UK to be the face of their Christmas Catalogue this year!!! Nicole is very excited about this, and we will be going to a photo shoot in Bristol at Easter, to have her pictures done. I will of course let you know where you can get hold of a copy later in the year!

The “Make a Wish” foundation have also been in touch, and Nicole’s wish trip to see the sights of London has been booked for the end of May. Highlights are likely to include a trip on the London Eye, a visit to Buckingham Palace (Tea with the Queen?!), lunch at the Rainforest Café, a West End Show (hopefully The Lion King), and a shopping trip to Hamley’s!!

Finally, I will be going back to work! The last 2 ˝ years has been a rollercoaster of tears, emotions, anger and frustration. Before Nicole fell ill, and our “New life” began, I had a normal job, life was going along nicely, and I quite enjoyed work! I have stayed off work as Nicole’s full time carer, ably assisted by my wife Sara, who also has to run the house and take care of Lauren! At the time, we also didn’t know if Nicole would make it through her treatment, as well as dealing with the loss of her mobility, so what decent father would have rushed back to the office.

However, Nicole continues to do well, and appointments are becoming a bit less frequent, although we are still dealing with 7 different hospitals! Lauren has settled at nursery, so we are getting a bit of time to ourselves at home. Sara feels that she can now cope on her own at home for most of the week, so I will start back part-time for 3 days a week from May 8th. This will enable me to ease myself back into the work environment, and also be at home 4 days a week to help Sara, and spend time with my girls. My previous employer Barclays is keen to have me back, and have been very supportive through all of this difficult time. Thank you to all of my colleagues at the Bank for everything that they have done for our family, and I look forward to working with you all again soon!

Until next time, take care!

Allan, Sara, Nicole & Lauren xxxx

Tuesday, February 21, 2006

STOP PRESS !!!!!

For those of you in the South West of England, look out for Nicole on ITV Westcountry News on WEDS, THURS or FRIDAY night. It is likely to be on Friday, but may be earlier. We have just come back from Tesco in Ivybridge, where Nicole helped to launch Tesco's new fundraising initiative with Whizz Kidz, who funded Nicole's power chair. She had a star collecting race with another young lad called Joshua, and the press, TV and local MP were there!

Nicole and I are also going to the local radio station, Gemini FM on Thursday morning, to see how the radio programmes are made, and there is a good possibility we may be interviewed on air!! Locals should tune in to 96.4FM, and I think you may be able to listen online at Gemini FM, and listen live to Chris Edgecombe (Edgey in the Morning). We should be there from around 7.30am until 9.00am, so set your alarm clock!!

The girls are on half term this week, and I promise I will do a full update soon. Maybe next week, when they are back at school?!!

Tuesday, January 10, 2006

Hello again and a Happy and Healthy New Year to you all!

Firstly, thank you to everyone who sent cards, letters and presents to the girls for Christmas. We were still opening them on Boxing Day! We really appreciate your support, almost 2 years after Nicole joined Postpals!

We had a great Christmas, and for a change, everyone was well. We had Sara’s parents, brother and sister down the weekend before Christmas. We had my Dad and his partner Patricia over for Christmas dinner (they were delicious!), and My Mum and her partner Pete, Natalie, and Great Grandma over in the evening. On Boxing Day, we went to my Mum’s house. Nicole ate her first ever Christmas Lunch, with real chicken, roast potatoes and carrots. A nice change from Chicken Nuggets and Smiley Faces!!

We had several friends visit over the Christmas period for coffee and mince pies, which was nice for the girls as they love to have company. On New Years Eve, we went to our friends Carole and Shaun’s house. There were about 24 of us, and we had a really great evening playing Buzz (a music quiz with real buzzers!) on the Playstation 2. Sara drove, because we didn’t think the girls would make it to midnight. However, they kept going, and we eventually got them home to bed at 1.45am!! We are not normally awake to see the New Year in, so it was nice for a change.

On 16th December, Sara and I went to the Holly Ball at The Grand Hotel in Torquay. This is a big event locally, and the first time we have been. We went with all of the parents from Nicole’s school, and the girls stayed with my sister Andrea, and cousin Tonitia, and we stayed at the Grand overnight. It was a chance to dress up in Dinner Jackets and posh frocks (I opted for the DJ!). They had disco and live bands, and everyone sings carols at midnight. It was a great evening, and we will be trying to book our tickets and babysitters to go again this year!

Nicole had her Christmas play at school about the Christmas Robin. It showed how well she is coming out of herself, as she did the play in her standing frame, and opted to speak a line from the play. This meant we were still able to see her when everyone stood up, and she said her lines beautifully. Last year, she just tried to fade into the background.

On Christmas Eve, we took the girls to a Christingle at the local church. It was packed, and gave us a lovely start to the Christmas break. We sung several carols, and then the children collected their Christingles, and sang away in a manger whilst they were lit, and all the lights in the church were turned off. We had to keep a close eye on Lauren, to make sure she didn’t set anyone’s hair alight!

On 14th December Nicole’s new power chair arrived! It was provided and funded by Whizz Kids. It has a riser on it which enables her to reach things she previously couldn’t. It also enables her to get herself to school and back, as we live at the bottom of a big hill. She has already taken it to school a few times, and we will alternate it with her manual chair to keep her strength up. Thank you to Gina at Whizz Kids for making all of the arrangements.

We have been to see the Aladdin Pantomime twice! The first time, we took Nicole was with around 200 other children from her school. The Panto starred Syd Little and Craig Phillips who won the first UK Big Brother. The second time was to pick up her Little Star Award from Cancer Research UK. Alison from Cancer Research arranged for Nicole to be presented with her Star after the show, and the local paper came to take pictures. Unfortunately, Nicole wasn’t expecting to go up on stage, and got a bit upset. She eventually went up to meet the entire cast, after the evil Abanazaar had been banished from the stage! and Craig presented her with her Star.

Lauren will be starting at The Orchard Nursery tomorrow, which is attached to Nicole’s School, so is telling everyone she is going to “Big School.” She is very excited, but I am not so sure Nicole is!

We went to Salisbury Spinal Unit yesterday, and they have measured Nicole for a soft back brace. We will go up again in 6 weeks to have it fitted. It was a long day, as it is a 5-6 hour round trip in the car. We will also be trying glycerine suppositories soon, to try and regulate Nicole’s bowels. We have had to take her off the Oxybutinin, because the side effects of a dry mouth were making it difficult for her to eat. We will tackle this problem again, once we have tried the suppositories.

That’s it for now. Thank you for checking in. Don’t forget to sign the Guestbook before you go, and we hope you all have a great year!

Allan, Sara, Nicole & Lauren Biddulph xxxx

Sunday, January 08, 2006

Update coming soon, I promise!
Allan x

Tuesday, November 29, 2005

Wow, has it really been 6 weeks!! Time for an update! We have had a very busy month, and there is a lot to tell.

Firstly on the health front, we went to Bristol for an MRI scan and Botox injections a couple of weeks ago (10 Nov), and nothing has changed since the last scan in June. This is fantastic news, as Nicole is now 18 months off treatment, so we can relax now and enjoy Christmas. The next scan is likely to be in 6 months time. We are hoping to get the scans closer to home, at Exeter, or hopefully Torquay. Bristol is a long way to go for just a scan, and Nicole understandably gets worked up and upset when we go. I took her up on my own for the first time, and she was sick in the car. Luckily I had a cooler bag to hand just in time. A tricky manoeuvre when you are doing 70 on the motorway!

On 13th November we went to Salisbury District Hospital (Odstock), where they have a specialist spinal unit. We have been trying to get to see them for some time now, as we want to ensure we are doing all we can to look after Nicole’s spine, now the Oncology is under control. We travelled up on the Sunday as it is a 3 hour drive, and stayed overnight. We were hoping for a nice comfy room for the night, but it turned out to be two rooms on a disused hospital ward! It was just as the cold snap started, and we had trouble trying to find staff on a Sunday to turn the heating on!!

We spoke to Mr Tromans the Spinal Consultant, and the Physiotherapist, Occupational Therapist, and Orthotist. We covered some of the ground that we have already dealt with locally, but it was useful to know that much of what we are doing is correct. We are trying some new medication to try and control Nicole’s continence. She has started a new medicine called Oxybutinin which relaxes her bladder, with the aim of keeping her dry between her catheters. It has had a dramatic effect, and worked almost instantly. However, it has side effects of nausea, diarrhoea, and gives you a dry mouth. We kept these symptoms from Nicole initially, but within a couple of days, she was struggling to swallow her sandwiches, so we had to tell her. We have now reduced the dose, and that seems to have improved things.

We now just need to try and control her bowel. Nicole takes Movicol to help things along, but there is no pattern. It could come at any time, and in any size, shape or form!! We have to keep a bowel diary for Salisbury, and they will then advise us how to move forward. They are talking about the possibility of enemas or suppositories!

The Physiotherapist and Occupational Therapist were helpful, and have come up with some ideas for exercises and equipment in the home, and will liaise with our contacts locally to implement their plans. The Orthotist looked at Nicole’s leg callipers, hips and posture. We will go back up to Salisbury in January to see him, to see if Nicole’s new stretches are helping, and to cast her for a back brace. We are not keen on this idea, because it is likely to be uncomfortable for Nicole, but it is something they are keen to try, as she does tend to slouch over to one side in her wheelchair, and needs her hips to stay even, to prevent further scoliosis of the spine.

They are also keen for Nicole to do as much standing as she can, as this will strengthen the bone density in her legs, and helps with bowel and bladder function. She has a wheeled standing frame, so will spend as much time in there as our busy schedule allows!! That’s it for health for the moment!

As mentioned in the previous journal, we went to Prestwick in Scotland for half term, and stayed at Malcolm Sargent House, part of CLIC Sargent Cancer Care. There were 8 other families staying there, and we made some good friends. Nicole met a girl called Antonia, whose sister Francesca has been ill, and they hit it off really well. Lauren wasn’t to be left out, and took a fancy to a boy called Thomas, and followed him around everywhere! The weather was atrocious, but it made for a relaxing week, as the girls just enjoyed playing with the other kids in the 2 big playrooms. We did get out for a day on the train to Glasgow, and we all went Ten Pin Bowling one afternoon. The Dad’s got to go to the pub on the Tuesday night, followed by the Mum’s on the Wednesday night! Unfortunately, due to flight times from Glasgow to Exeter, we came home a day early, and missed the Halloween party on the Thursday night.

On Sunday 30th October, we had lunch in a local pub for Great Grandma’s 85th Birthday! The girls dressed up in their Halloween costumes. Nicole was a pumpkin, and Lauren was a witch. We came back to our house afterwards, and played a few games. We weren’t going to take Nicole “Trick or Treating,” until one of her friends from school rang, and asked if she wanted to come. In the end about 20 of them all went round in a big group, and Nicole really enjoyed it, coming home with a pumpkin pail full of sweets!

On bonfire night we went to a friend’s house for a big firework and barbeque party. Everyone dressed up again, and we had a big bonfire, and lots of fireworks. The weather was really poor again, but we managed to stay fairly dry, and the fireworks were great. Nicole is starting to enjoy them more now, as she used to be frightened by the noise! Lauren, however, totally freaked out, and was in a right state! I was hoping to have a few drinks to celebrate my 37th Birthday on the Sunday (6th Nov), but we ended up going home early because Lauren got very tired and upset. Nicole also got upset, but only when we told her we had to go home! She was having a great time, serving all the drinks behind the bar!!

Sunday 6th was my Birthday and I got a PSP (Playstation Portable) from everyone which was great. However, Nicole has spent more time on it than me, and is getting pretty good at it too!! She has already completed 25f Burnout Legends! Monday 7th was my sister Andrea’s 36th Birthday, and Sara joined her for lunch with her friends. Tuesday 8th was Lauren’s 3rd Birthday, and she had a good day at Wacky Warehouse with her friend Charlotte. Hopefully you will have seen the photos I posted on the site recently? November is a busy time for Birthdays!! This time last year we were all enjoying our Birthdays in Walt Disney World Florida. How time flies!

On 17th November, Nicole went to Ben’s house for his Birthday party. Ben goes to the same school as Nicole, and has recently joined Postpals. He has Spina Bifida, and other conditions, and is also in a wheelchair. He has recently set up his own Caringbridge site here – Ben’s Story. If you get chance, please leave him a message.

I know many of you are still following Nicole’s story, but haven’t signed the Guestbook for a long time. It would be great to hear from you, so we know who you are!! Your support is really appreciated, and we are glad to be bringing you better news these days!

We had a good bit of snow last week, and Lauren and I managed to get out in the garden and build a little snowman! (See photos). Unfortunately Nicole was at school, and most of it had melted by the time she came home. I have promised her we will build a snowman with her if we get any more. It only snowed once last year, and that was on Christmas Day!!

That’s it for now. Please sign the Guestbook before you go, and I will update again soon.

Allan, Sara, Lauren & Nicole Biddulph xxxx

.

Thursday, October 20, 2005

Hi All!

Just to let you know that we will be in Scotland for half term!!

We are staying at Malcolm Sargent House in Prestwick, where we stayed in May last year. Nicole was only just off treatment then, so she should be able to enjoy it much more this time. We had a great time last year, and the girls are really looking forward to it. Copy and paste the following link for info on the house:-

http://www.intayrnet.com/jindex.html?c/malcsar/index.html

We fly up from Exeter to Glasgow on Saturday. I will do an update when we get back with new pics!

Nicole's friend at school, Ben, who has Spina Bifida, has set up his own website now (see links below). He will also be joining Postpals (www.postpals.co.uk) soon. I have put a picture of him on the photos page, after he popped in and helped me clear the hedge with the girls! If you get chance to leave him a message, I know he will be thrilled.

Have a great half-term!!

Allan, Sara, Lauren & Nicole xxxx

Tuesday, September 27, 2005

Hello again!

Everything is fine with us. Nicole is back at school, and loving every minute of it!

It is 2 years ago this week that Nicole was diagnosed with her cancer. It seems to have gone by so quick! My lasting memories of September 2003 are looking up at Nicole’s bedroom from the garden on the day we were due to travel up to Bristol Children’s Hospital. I remember seeing her smiling, happy face as she waved to me, and the tears were welling up in my eyes as I waved back, and wondered what we were about to put her through. Little did we know what other tragedy was waiting ahead.

However, I also remember thinking that she may never come back to her bedroom and toys ever again. The next time she did come home, she was paralysed, bald and on chemo, but she did come home, and she still is home. We have lost many friends on our journey with Cancer, so despite Nicole’s complications, we are just so grateful to have her here with us, to hug and hold every day, and tell her we love her.

It has been a quiet few weeks for a change, hospital wise. October will be busier, with a couple of trips to Bristol for Urology and Urodynamic tests to assess Nicole’s bowel and bladder function. We have been waiting some time for these tests, which will give us some guidelines regarding her catheterisation and bowel management. We will also have a general clinic meeting in Exeter with our Oncologist. The next MRI is likely to be in November / December, but we haven’t been given a date yet.

We have also now got the referral to Salisbury Hospital (Odstock), which we have been pushing for. Odstock is a specialist spinal unit, and we want to get advice on how to protect and strengthen Nicole’s spine. We also hope to get information on all of the research going on at the moment into electrode stimulation technology and stem cell research.

Scientists are using electrodes to stimulate muscles in the legs of paraplegics. They are also working on stimulation of the bowel and bladder. A sort of “Press a button and wee on demand” sort of thing!! This sort of technology could make a big difference to Nicole’s quality of life, although they may still be a long way from perfecting the technique.

For more information on stem cell research, cut and paste the following link. We are not building our hopes up, but it is nice to know that the possibilities are being looked at.

http://www.ucl.ac.uk/campaign/news/latest/newsitem.shtml?cnraisman

Nicole is currently being assessed by Whizzkids for a powered wheelchair. We are hoping that it will be able to rise and recline. This will give her a lot more freedom, and will enable her to keep up with her school friends. We will still keep her manual chair, as it is important to build up her upper body strength. The powered chair will be used for fun and when she is tired.

We will also be getting a wheelchair accessible vehicle, a VW Transporter. This will enable us to accommodate all of the equipment that Nicole needs, and she will be able to travel in her wheelchair. This will reduce the amount of lifting we have to do every time we go out.

We have had a few nice days out, including a special needs picnic and funday at Cockington Country Park, and a day at Paignton Zoo organised by the Lions Club. Unfortunately the weather was appalling for the Zoo day, but the kids enjoyed themselves all the same.

Over the last few weeks, we have had visits from several relatives. Brian, Diane and Auntie Joan came over from Canada, and we managed to spend a lovely couple of days with them whilst they were in Torquay. I went to see them in Canada about 14 years ago with my Nan, and would love to take the girls there one day to experience their beautiful country. They live near Toronto, and not far from Niagara Falls.

My Nan’s brother Uncle Ron is visiting at the moment with his son David and his wife Lynne. We all met up for a meal on Sunday with other relatives John and Mary from Paignton, and Jean, David and Luke from Cornwall. We haven’t seen most of them for a very long time, so it was good to catch up with them all. It was the first time many of them had seen Nicole, and they were all impressed with her positive attitude, and the way she is dealing with her condition.

I hope you like the new pictures. Thanks for stopping by!

Allan, Sara, Nicole & Lauren xxxx

Wednesday, August 31, 2005

It is with great sadness, that we learnt this morning that our good friend and cancer buddy Beebo (Jamie), lost his brave fight against Neuroblastoma.

He will be sorely missed by his family and everyone who knew him. We were lucky enough to have known Jamie and his family during Nicole's treatments in Bristol, and then back at home during his brief remission in Teignmouth.

We will miss you Jamie. Heaven now has a Super Hero to fly with the angels. God Bless xxxx

Saturday, August 27, 2005

Hi all. We are still here!!

Sorry for the lack of updates, but we have been busy enjoying the summer holidays. It has gone quicker than we expected, and Nicole will be back at school in 10 days!!

On the first weekend of the holidays, Sara and I held an 80's school disco party at a friends house! It was a good chance to relax, whilst the girls stayed with their cousin Tonitia. Needless to say a good night was had by all, with lots to drink, good music and a chance to dress up. Sara was a school girl, and I had a "Frankie Says Relax" t-shirt. Sorry but I don't have any pictures to upload!!

The weather was pretty poor for Nicole's first week off, so we went Ten Pin Bowling, and to the cinema to watch Madagascar, which she enjoyed. The sun came out for the second week, so we went to Crealy fun park in Exeter with friends Marcus and Ali and their children. We also went to Cockington Fayre which was also a good day out.

Nicole's friend Aimee came for tea on the Friday, and on Saturday we went to the Donkey Sanctuary in Sidmouth. The girls enjoyed looking at all of the donkeys (they have over 500!) and got to have a ride as well (see pics). Despite Nicole screaming the place down when we tried to get her on the donkey, she settled down to enjoy it, clinging onto Grandma and Mummy as she went around!! Nicole's donkey was called Bilbo Baggins, and Lauren's was Floppy! The day was arranged by CLIC Sargent for all of the cancer kids in South Devon.

Week three was fairly quiet with a session of Physiotherapy and Hydrotherapy on the Monday and Tuesday. Nicole's friend Jodie came round for the day on Wednesday, and they had fun dressing up and playing games. We went to clinic at Exeter on Thursday for x-rays, heart echo, and general check up. Nicole's Oncologist was pleased with her progress, and has no concerns at the moment. We are still waiting for a referral to Odstock hospital, which is a specialist spinal unit. After Clinic, we went into Exeter for a picnic on the green, and the girls had a look around the Cathedral. On Friday, the girls spent the day at Grandmas house, which they always enjoy.

Week four was our holiday to Haven at Littlesea, Weymouth. We had a Rory themed caravan, with ramped access, wide corridors and sliding doors. This made things a lot easier than when we went to Newquay earlier in the year. We spent a lot of time with Nanny, who lives nearby in Portland, and doesn't get to see the girls as much as she would like. The first day we were due to meet up with friends at Chickerell Village Carnival, but as we arrived the heavens opened, so we ended up meeting at a pub with Dave, Lynn, Kieron & Holly. I used to work with Lynn at Barclays in Weymouth, and it was great to see them all again, as they have been following Nicole's journey. We also caught up with friends Chris, Denise, Thomas & Olivia. The next day we went to Nanny, Grandad and Uncle Ian's house, and the girls played in the garden and used their bubble machines that Nicole's carer Barbara Dunbar gave them before we went.

Most nights we went to the club to see the entertainment, and Nicole enjoyed watching the character shows, and joining in the party dances with Rory the Tiger, Bradley Bear, and Anxcious Elephant. You could see a real difference in her this year, and instead of trying to hide in the corner, she was forcing her way to the front to get a good view of the action!! She made a couple of good friends during the week. She met Molly at the club, and spent some time with her playing in the evening, and swimming in the daytime. Later in the week, she met a lovely girl called Hayley who she really liked. They used to go off on adventures with the torch, and try and discover what was in "The Cave" (an overgrown, disused brick building). Hayley also came to the club with us, and I had a meal with her Mum and Dad, who sadly lost their 6 year old daughter Courtenay earlier this year. They live in Bristol, and have relatives in Torquay, so we are hoping that we will see them again.

We took a stunt kite with us, and Nicole became very skillful at using it, doing figures of 8, and loop the loops in no time, despite never having flown a kite before! On the Wednesday it was Weymouth Carnival, and we enjoyed the rides along the seafront during the day, as well as the airshows including the Red Arrows, followed by the Carnival procession. Lauren found the aeroplanes a bit noisy, and had to cover her ears!! On the Friday, we went to the Sealife centre, which the girls really enjoyed. As well as seeing all of the sea creatures, Nicole and Lauren bravely held a big Spider Crab!! There was also a water area called Splash Lagoon, that Nicole was able to whizz through fountains of water and get soaked in her wheelchair!! We were enjoying ourselves so much, we forgot to put another ticket on our car, and got a parking fine :(.

This week Nicole has had Physio and Hydro again. We went to Cockington on Tuesday, and caught up with my Sister and cousin Tonitia, and friends Rob, Trudi, Emilia and Georgia. On Thursday, the fun fair on Torquay Seafront opened up exclusively for all of the special needs children in Torbay. They do this every year, and Grandad joined us for a fun packed couple of hours on the Big Wheel, Helter Skelter, Ghost Train etc!!

Sara and I are off to another party tonight, which is a Country and Western Hoedown!! Grandad is babysitting, while the cowboys and cowgirls get down to some linedancing! We will soon start to get a reputation for enjoying ourselves too much, but after what we've been through, who can blame us!!!

I did have lots of nice pictures to show you, but have crashed Nicole'c PC, which has all of the photos on it. The only person I know who can rescue it is Jamie's Dad Dave, but if you are following his story, you will know they have enough to deal with at the moment. If you get chance, leave them your support (see link below). Our thoughts are very much with them at the moment, and we pray that Jamie has a peaceful end, and admire the way that Dave, Kelly and their familes are handling things. We cannot imagine what you are going through.

Allan, Sara, Nicole & Lauren xxxx

Thursday, July 28, 2005

Just a quick note to let you know that Nicole's spinal surgeon, Mr John Hutchinson will be on television next week. The programme, "Your Life In Their Hands," is on BBC1 at 9.00pm on Wednesday 3rd August 2005. I thought that some of you might like to watch it? Allan x

Wednesday, July 20, 2005

Hi all!

Well the weather has finally improved, and the girls have been enjoying themselves out in the garden. Nicole had an extra 3 days off school while they mopped up from the storms, and the school even made the front page of the local newspaper! Today is the first day of the summer holidays, so they have six weeks to tidy up and redecorate!

Nicole is doing well, and had a great report from school, so we are proud to share her teachers summary with you - "Nicole is a happy, polite and enthusiastic member of the class. Her confidence continues to grow, and she has developed good relationships with her classmates. Nicole shows a real enthusiasm towards all of her learning, and has made good progress across the year."

On the way home from school yesterday, Nicole started crying, which is not like her at all. When I asked her what was wrong, she said that she was going to miss her teacher, Ms Waller, as she is moving to a new school next year, and she won't see her again. It is lovely to think that she builds such close bonds with the people around her at school. Her carers, Mrs Dunbar (Barbara) and Mrs Burke have also had a huge impact on her success and happiness at school, and we thank them sincerely. Luckily Barbara will be moving up with Nicole next term to her new class, which Nicole is really pleased about.

The school recently had their sports day, and Nicole joined in with all of the events, including throwing, hockey slalom, and the bat and ball equivalent of the egg and spoon race. Of course Mummy and Daddy also had to get involved with the parents obstacle race, and thankfully no world records or bones were broken!!

At the end of June, Nicole and I took part in the Torbay fun run around Paignton seafront. The event is part of the Torbay half marathon, and raised funds to help teenagers in hospital. There were a lot of pushchairs taking part, but Nicole was the only wheelchair user, and was proud of the medal she got for completing the course.

She has had a couple of nice days out, including a school trip to Plymouth Aquarium, where she got to hold a starfish. Barabara undertook all of her care needs, which meant we didn't have to go with her which is great for her independence. She also visited Pennywell Farm with Grandma and Grandpa Pete, where she got to hold and feed all of the animals.

Nicole has also just taken part in another weekend wheelchair course. She is becoming very confident and strong in her chair, and can now push herself up quite steep slopes, and can tip the chair to get up and down kerbs. These will become essential skills as she gets older. Daddy also got to spend the weekend in a wheelchair, and found out how difficult all of these tasks are. I think I was aching more than Nicole by the end of it!!

As you can see from the new pictures, the girls have been having fun out in the garden. On Sunday, they went to Cousin Tonitia's 7th Birthday party, at the local swimming pool, which was filled with big inflatables! The girls had great fun riding on the dinosaurs, dinghys, and rubber rings. My sister choose a swimming party, as it was something that Nicole could join in with on an equal basis. I think Daddy enjoyed himself just as much as the kids!

We have a couple of days out planned for the holidays, and will be going to Haven Holiday Park in Weymouth for a week, to visit Nanny, Grandad & Uncle Ian in Portland. We only have a couple of local hospital appointments, as well as weekly Physiotherapy and Hydrotherapy sessions, so hopefully we will get to spend some quality time together.

My 12 month career break with Barclays Bank was due to end today, but I have extended it for 2 more years. This effectively means that I have resigned, which is a bit scary after 20 years, but Nicole's level of care is so high that my family needs me more than they do at the moment. They have been very supportive, and I hope that I will be able to rejoin them if I need to in the future.

We hope that you all have a good summer, and will update when we have more news for you.

Allan, Sara, Nicole & Lauren xxxx

Friday, June 24, 2005

Hello again!

We saw our spinal specialist in Bristol on Wednesday, and he couldn't believe how well Nicole was looking! He was the surgeon who pinned Nicole's spine back together, when the biopsy went wrong in September 2003, and her spinal cord was exposed, causing her paralysis.

He hadn't seen Nicole for almost 12 months, and she has changed a lot since then! He told us that he honestly didn't believe Nicole would still be with us, but was delighted that she had come so far. He had a good look at her spine without x-raying, and said that it looked in good condition. The muscle and fat around her spinal injury is improving and filling in, because when the tumour fell out of her back, it left a big hole.

The paralysis is still permenant, but she appears to be building up the strength in her trunk, which she will need in the future to transfer herself, and get around on the floor. She has also had another botox injection in her legs, to help with her standing and stretching excercises.

I went to see Jamie and his family on Tuesday (www.beebo.info) and he was in good spirits, but looking quite frail. They are due to go to Legoland in Denmark today, and I hope that he is well enough to make the trip.

Nicole is home from school today, because when we got her to school, we were sent home because the school was flooded from all of the thunderstorms last night!! It will give her a chance to get a good look at her birthday presents, because we have been so busy over the last couple of weeks!

I have now completed two online albums of Nicole's birthday(41 pics), and our trip to Eurodisney(83 pics). I will not do a big update on both of these events, but will let the pictures tell the story! If you don't receive the links today, and would like to see them, please drop me an email, and I will be happy to send them to you. They are quite large albums, but I thought some of you might like to see them all.

I hope the thunderstorms stop soon, because it is freaking Lauren out, and the sun returns! The girls have been having fun in the garden with their new sandpit, which now looks more like a paddling pool!!

Allan, Sara, Nicole & Lauren Biddulph xxxx

Tuesday, June 14, 2005

Quick update.

We saw Nicole's Oncologist in Exeter today for the results of last weeks MRI scan, and she has told us that there are no problems from her initial look at the pictures. She will have a better look next week, but the signs are good, which is great news!!

She has indicated that the frequency of scans may now be reduced to every 4 or 5 months, which feels like another step in the right direction.

Thanks for your continued support. It means a lot to us.

Hello friends!

Just a quick thank you to everyone who has sent Nicole messages, cards and gifts for her 6th Birthday today. As usual, she has been inundated from Postpals, and has had great fun this morning opening all of your presents, and beautiful home made cards. They really are very special.

She had a great Fairy & Pirate party on Sunday with all of her school friends, and we are having a family barbeque when she gets home from school this afternoon. We are keeping a close eye on the weather!

We have loads to update you on, but as you know we have been busy with our trip to Eurodisney, Nicole's Birthday, and lots of routine appointments to Hospital. Nicole is feeling well, and we will get the results of last weeks MRI scan on Thursday. I will attempt a full update within the week!

As we have so many photos to show you,(we can only put 4 at a time on Caringbridge!)I will make up a couple of online photo albums to share with you all. If you would like to see the photos, and I don't send you the link before the end of next week, please drop me an email, and I will be happy to send them to you.

Until then goodbye & Thank you xxxx

Friday, June 3, 2005

Hi all.

Just to let you know that we had a great time in Eurodisney, and Nicole had cuddles and pictures with all of the characters.

Will do an update soon, but came home to some bad news about our cancer buddy Jamie. If you get chance, send them your support at www.beebo.info - they are all in our thoughts.

Wednesday, April 27, 2005

Hello.

Well we have had a busy few weeks! At the start of the Easter break, Nicole went to an Easter Disco, and had her face painted as a bunny rabbit. She has resisted having her face painted at every birthday party she has been to for the last couple of years, but curiosity has got the better of her now, and we can’t go anywhere without seeing her transformed into some kind of animal or character!

The girls enjoyed their week at the holiday park in Newquay. We must have chosen the wettest, windiest, coldest week of the year so far. Not the best conditions for sleeping in a caravan, but the girls made the most of the Kids Clubs, and swimming pool! Nicole is also getting more confident with the characters at the parks, and spent most nights dancing with Henry the Hippo! She even won us a family ticket to Newquay Zoo, with her disco dancing efforts.

The school birthday season is upon us, and the invitations are flooding in! Last Saturday we had 2 parties in 1 day. Jamie’s (www.beebo.info) from Teignmouth in the morning, and her best friend Charley’s in the afternoon. Nicole has become much more independent, and likes to be left on her own at the parties. I think she is embarrassed that we are the only parents that stay!! It is difficult for her when the party is at a soft play area, but she is just happy to watch her friends on the equipment, and be part of the atmosphere.

Last week, Sara and I were invited to the CLIC Charity Preview of Billy Elliot the Musical in London! We took the train up from Torquay, and stayed in Victoria, only a short walk from the theatre. We managed to fit in a quick visit to the “Queens House” as Nicole calls it, and had a nice meal before joining the champagne reception before the show. The evening was organised to celebrate the merger of CLIC and Sargent, the 2 Cancer charities that have been invaluable to us. Regular visitors to Nicole’s website will remember that we stayed at CLIC house and Sam’s house in Bristol, and spent a week at Malcolm Sargent house in Scotland. (www.clicsargent.org.uk)

The show was fantastic, and we managed to sneak into the after show party, to meet the stars, and help finish off the vodka cocktails! We met Tim Healy, who plays Billy’s Dad, Haydn Gwynn who plays his ballet teacher, and Joe Caffrey who plays his brother Tony. We also had our photos taken with Helena Bonham-Carter, Nigel Harman, and Laurence Llewellyn-Bowen (see pics). They were all very friendly and interested to hear about Nicole’s illness and progress. Apparently Nicole Kidman was supposed to be there, but we didn’t see her. We would have loved to have met her, as she is part of the reason why Nicole got her name.

We are off to school to pick Nicole up in a minute, as the local radio station, Gemini FM, are taking her in Black Thunder (4WD car) to the Disney Store in Plymouth. This is part of her prize for winning “Child in the Face of Adversity” at the end of January!

Medically, Nicole is doing well, and we will be up to Bristol again in the second week of June for the next round of tests. Speak to you all soon xxxx

Friday, April 1, 2005

Hi All.

Quick update for you. We had a call from Nicole's Consultant this afternoon, and she has managed to have a quick chat with the Radiographer, and seen the CT Scan. They need to have a better look at the MRI and CT Scans together, but she has said that there doesn't appear to be anything to worry about at the moment. We will speak to her again when we are back from Cornwall, but it appears to be good news! Thank you for all your good wishes. We can relax (?!) and enjoy our holiday next week now.

Nicole lost her first tooth on Good Friday! The tooth fairy came, and left her Ł1. She was so proud, and can't wait for the next one to fall out! Could be an expensive year!!

Thank you for the Easter Cards, and especially to Liz Cook for a lovely box of Easter Goodies for the girls, and Kate Dee for a fantastic Bunny Balloon. (See pics).

We will catch up with you all in a couple of weeks.

Tuesday, March 15, 2005

Hello again.

We now have a date for the CT scan. It will be in Bristol on 31 March, during the Easter Holidays. Will let you know as soon as we get the results. However, we are away for the second week of the holidays at Hendra Caravan Park in Newquay, Cornwall.

Sara celebrated her birthday on the 19th February, and we managed to get a rare break away from the girls for the weekend. This is the first time we have left Nicole since her diagnosis, and it was a good break for all of us. My sister Andrea was invaluable again, having the girls overnight on the Saturday and Sunday, ably assisted by Grandma! No mean feat, considering Nicole’s care needs. Thanks Sis! xxx.

We stayed at a listed Victorian Mansion called Tortworth Court, just North of Bristol. It was nice to make the journey without stopping at the Hospital for tests! It was a relaxing weekend, and was nice to eat our meals without interruption, and not wake up to the girls calling out for Mummy or Daddy! The girls had a great time as well, all sleeping in the same room with Cousin Tonitia.

On Mothers day, we went for our usual Sunday morning swim, and stayed at the club to have lunch. Half term was pretty uneventful, as we had to stay close to home to deal with the builders. Our bathroom is now finished, and they are half way through the shower room. They will then complete the ramped access into the playroom, and leave us in peace. They have been with us for 4 weeks now, and we look forward to getting our home back, and cleaning up the mess!!

It is hard to believe that it is 12 months since Nicole’s Wish Walk at Cockington Village, to raise funds for her trip to Florida last November. She has come a long way since then, and I have put new pictures on the photo’s page to show how she has progressed. It is easy to forget just how ill she was back then. Her treatment finished at the end of March 2004.

It is our wedding Anniversary on 24 March. We have to see Nicole’s Oncologist at Exeter for a review in the afternoon, and hope to get out for a meal in the evening, or at least enjoy a takeaway in peace!

Matty and family (see link below) have now left for their new life in France, and we wish them health and happiness for the future. We will miss them, but hope to visit them, or see them when they visit the UK. Good luck guys xxxx.

Bye for now. Allan, Sara, Nicole & Lauren.

Wednesday, March 9, 2005

Hello everyone.

Just a quick update about last weeks test results.

Nicole's x-ray was good, and her spinal curviture is no worse than 3 months ago. Her spinal rods are holding up well, and no further surgery is required at the moment. Another x-ray has been booked for 7 June, to review again.

The MRI results were difficult to assess again. This is because the spinal rods distort the images. However, Nicole's consultant seems happy with the results, and tells us that there is no growth in the tumour, which is good news. However, there may be some brightness around her spine, so a CT scan will be arranged in the next few weeks, which gives a better image of Nicole's bones. She hasn't had a CT scan for about 9 months, as they use more radiation than an MRI scan, so cannot be performed so often. We will let you know the results as soon as we have them.

Apart from that, Nicole is well, and enjoying school. Lauren is a bit unsettled with teething, and has gone off her food and sleep a bit!

The builders are in, adapting the bathroom, and turning the toilet into a shower/wetroom, so we are living in a dust storm at the moment, but I am sure it will be worth it in the end! Will give a fuller update soon.

Allan, Sara, Nicole & Lauren x

Tuesday, February 22, 2005

Hi all.

It's just over a week until the next scan on 3 March. People often wonder how we feel when Nicole has to go to Bristol for her MRI. We found the following poem on another little girls website, and would like to share it with you.

..........................................................

THE SCAN

A Sleepless Night

Tomorrow our lives could change again
forever...forever...
Will the scan be clear, will the tumor return,
now...or never?...
We try to smooth the ups, the downs.
It's been nice breathing calmly, nice not to frown,
But tomorrow our lives could change again,
forever...forever...

Tomorrow we'll sit while the bangs and clicks
surround us...engulf us....
staring down the tunnel, waiting for the films
that free us...or damn us...
The probation could last for another three months,
Or find us retreating behind false fronts
That we take out tomorrow to hide the anguish
around us...within us...

Tomorrow our lives could continue on course
or falter...get altered...
It's amazing to think that one simple test has
such power...such impact...
To the world around us the test dates come
one after another, eventually numb
To the fact that tomorrow could leave us again
bewildered...off kilter...

Tomorrow we hope that the treatments have helped
change things...delay things...
Are there further treatments that we can survive
do we want them?... can we stand them?...
Has the Cancer been killed; does it lie there in wait?
Will it show up tomorrow, or some much later date?
Tomorrow a crossroads, or merely a rest stop
on a journey....to eternity...

Tomorrow our lives could change again
forever...forever....
Tomorrow our world could be turned upside down
tossed asunder...it's no wonder...
That we dwell in the past, trying to recall the way.

...........................................................

It is difficult to put it into words how we really feel, but the words in this poem come pretty close. Every scan is a crossroads, and we hope that our journey doesn't take another twist or turn.

We will of course let you know the results as soon we have them. Until then, Nicole is doing well, and is enjoying being back at school after the half term break.

Wednesday, February 2, 2005

Hi all. January has ended with a high, but has also had its sadder moments.

A couple of weeks ago, Sara and I attended the funeral of David, a 10 year old boy from Plymouth, who had Osteosarcoma (bone cancer). We were lucky enough to spend some time with him during Nicole’s treatment in Bristol Children’s Hospital. David, like Nicole, was in a wheelchair, because he had to have a metal donor bone implanted in his leg. I also spent many hours getting thrashed by him on the Xbox or Playstation 2!!

David had a brief period of remission in the summer, where he fulfilled many of his dreams, including a family trip to Euro Disney, meeting Newcastle United, flying in a helicopter, and riding in a sports car. He liked to live life to the full, but sadly relapsed in autumn 2004, and was not responding to treatment. He held on to enjoy Christmas Day with his family, but passed away a couple of weeks later.

I have never been to a child’s funeral, and hope that we don’t have to go to any more. It is one of the inevitable side effects of growing close to fellow cancer sufferers. David had a woodland burial, and the church service was a great celebration of his life, and was packed with his family and school friends. Poems were read to commemorate his life, and his school friends sang his favourite songs. After the service, balloons were let off outside the church, to remember him. His Mum Mel, Brother George, and sisters Abi and Steph all handled it very well, and we are so proud of them. We will miss you David xx.

Last Friday, Nicole’s bravery and courage was recognised, when she received a Torbay and South Devon Community Award, in the category of “Child in the face of adversity.” She was a joint winner with Jordan Bright, another local lad, who had his legs amputated at the knee, after a car hit him. The award was for children who had shown courage and bravery, and always had a smile, despite their circumstances. A perfect description of Nicole!

The awards were presented at a fantastic Gala Evening at the Imperial Hotel, the only 5 star hotel in Torquay, and was organised by local paper The Herald Express, local radio station Gemini FM, in conjunction with Barclays Bank. Nicole’s category was sponsored by the Bute Court Hotel, and we thank them for their support. The evening started with a champagne reception, followed by a 4 course dinner and wine, followed by the awards. All of the family attended to support Nicole, and had a great evening. After the awards, music was provided by Gemini FM, and a tribute band called So 80’s.

Nicole received a cheque for Ł500 for winning, which we will put towards a trip to Euro Disney in May, a large “me to you” teddy bear, a framed certificate, and a lovely glass trophy, like they get on TV!! As you can see from the pictures, Robbie Williams presented the award (well a cardboard cut-out of him anyway - Apparently he was busy in L.A.!). Gemini FM has arranged to take Nicole to the Disney Store in Plymouth, where she will get Ł50 of vouchers to spend as she wishes. The Bute Court Hotel is also trying to arrange a coach holiday for all of us. Nicole managed to keep going until the end (1.30am!), but we didn’t take Lauren, as it would have been too late for her. Thanks to Jo Lardner for babysitting.

On Sunday, we met up with the staff of Barclays Bank in Teignmouth, to do a sponsored walk from Dawlish to Teignmouth. Unlike the last walk we did for Nicole, the weather was fine, and we had a lovely stroll along the seawall to the pier, and back to the Smugglers Pub. The walk was to raise money for CLIC (Cancer & Leukaemia in Children), who helped us during our stay in Bristol, by providing us with support, and accommodation near to the hospital. It looks like we have raised over Ł1,000 for the charity, after Barclays has matched the funds raised Ł for Ł. We were grateful for the help CLIC gave us, and it is great to be able to do something that will help families in a similar position to ourselves.

Yesterday, we went up to Bristol Children’s Hospital to review Nicole’s legs. They become very difficult to straighten, as the muscles in her legs shorten through lack of use. Her consultant decided to give her some more botox injections, which has the effect of paralysing certain muscles in her legs, to make them looser. It is the same toxin that is used in cosmetic surgery, but I stopped short of asking for a couple of syringes for my wrinkles! It should take effect in the next few days, when we will step up her physio again, and try and get her in her standing frame as much as possible. They were able to give her the injections without anaesthetic this time, as she has no feeling in her legs. This meant we could stay with her during her treatment, which was nice, but my legs started to wobble after about the 12th needle went in!!

We have lots more appointments this month, and are up in Bristol at the beginning of March for the next round of scans etc. Until then take care, and we will speak to you again soon.

Allan, Sara, Nicole & Lauren Biddulph xxxx

Wednesday, January 12, 2005

Hello. A Happy & Healthy New Year to you all!!

Wow, we had snow on Christmas Day. How exciting! Just as we sat down to lunch, the skies opened, and down it came. See pictures for a look at our festive looking home. I can't remember the last time it snowed on Christmas Day, but it was a long time ago. It doesn't snow very often in Torquay(we are too near the sea), and in true Torquay style, it was all melted by teatime!

We had a very good Christmas. Nicole and Lauren had a mountain of presents, and we are still trying to find room for it all! Nicole is a member of Postpals (www.postpals.co.uk) and they kept the postman busy, delivering a parcel almost daily! The girls main present from the family was a large Doll's House, which has taken pride of place in the playroom. Other favourites were Disney DVD's, books, puzzles, craft kits, cuddly toys and lots more besides.

Nicole had one very special present from a good friend of ours, Dave Smith. Dave used to run his own sign writing business in Torquay (Signworks), but now works from home. He is a very talented artist and sign maker, and made a beautiful Disney Princess mirror for Nicole's room. It had a picture of Cinderella on it, engraved stars and bubbles, which were lined with 24 carat gold leaf. Underneath the picture is engraved "Nicole Disney Princess." It is absolutely stunning, and is the focal point of Nicole's newly decorated room. I will put a picture on the website, when I have managed to get a good image of it.

Both of the girls were quite poorly over the Christmas break. Nicole is just finishing her 3rd lot of antibiotics. She had a bad cough and cold running up to Christmas, Tonsilitus after Christmas, and an infection over the New Year! She did really well taking her medicines, as she hates the taste. Luckily the first two tasted like Jelly babies? but the last one was absolutely foul! I have to give her credit for completing the course!! She is still coughing well, but hopefully it is just the time of year.

Nicole went to two pantomines over Christmas. Snow White in Torquay, and the fantastic Cinderella with Brian Conley in Plymouth, on New Years Eve. She enjoyed both of them, but was frightened by the flash and bang when the Fairy Godmother came on in Cinderella!!

Despite the girls being poorly, we had a great time, and it was certainly better than 2003! This time last year we were in the middle of treatment, and had set up residency in Bristol! We were just glad to all be together at home, and enjoy the festivities without frequent trips to the hospital.

There have been a couple of messages left on Nicole's website recently from people who are going through similar experiences. A lady called Jilly from Somerset who had a spinal cord tumour removed in Bristol, and is confined to a wheelchair. A little girl called Megan in Croydon who was diagnosed with Neuroblastoma at the age of 6 months! She will be 2 in March, is in remission, but has also been left paralysed. And a girl called Jill in Missouri, USA who had a rhabdoid tumour wrapped around her spine. She had the tumour and 2 of her vertebrae in her spine removed, and survived the surgery!

See www3.caringbridge.org/mo/jillsjourney

Until last week, we all thought that we were alone in the fight against Cancer and paralysis. I have been in telephone contact with Jilly, and Megan's mum Beth this week. I have also been in email contact with Jill's mum Joyce. It was sad to hear their stories, but also reassuring to know that we are not alone. I hope that we can all be of help to each other in the years to come. If you know of anyone else who is going through similar experiences, we would be delighted to hear from them, and offer our support.

Nicole is now back at school, and hopefully can have a settled period before her next MRI scan in March, and further surgery on her back.

Thanks for looking in!

Allan, Sara, Nicole & Lauren Biddulph xxxx

Thursday, December 16, 2004

Hi all.

Quick update from Bristol and Exeter Hospitals. Sorry for the delay, but we are busy getting ready for Christmas!

The results from the MRI scan were good, and showed no growth in the tumour since the last scan 3 months ago. This is reassuring, bearing in mind Nicole has now been off treatment for 7 months.

The spinal surgeon has also decided to delay any surgery to pin Nicole's spine. Her x-ray showed her spine curving, but it had not changed drastically from last time. He would like her to be as strong as possible for the surgery, and to have put on a bit of weight. She will have another x-ray and MRI scan at the beginning of March 2005.

This is the news we were hoping for, and we can now relax and enjoy Christmas. Last year, Nicole was in the middle of her treatment, and got out of hospital on Christmas Eve, but had to go in on Christmas Day and Boxing Day for antibiotics. On New Years Eve we moved into CLIC (Sam's) House in Bristol for 6 weeks of Radiotherapy.

At the time, we feared that it might be Nicole's last Christmas with us, so we are delighted with her progress, and are looking forward to a very Happy Christmas break together, at home sweet home!!

Nicole is doing well at school, and had her Christmas Play this week, "Donkey For Sale," where she played an angel. She had a lovely white outfit, a tinsel halo, and silver tinsel all around her wheels! Around 150 children took part in the performance, and did a great job.

On a sadder note, we visited David in Plymouth last weekend. He was in Ward 34 at Bristol whilst Nicole was there, and we spent many hours playing the Playstation and Xbox together. David had Osteosarcoma in his leg, and had a metal donor bone implanted. During the summer, he was making steady progress, but unfortunately in August the cancer returned. He started on oral chemo, but it wasn't having any effect. Fluid is building up on his lungs, and they are not able to stop it. We pray that he is able to enjoy Christmas, and our thoughts are very much with his Mum Mel, and siblings Stephanie, Abigail & George.

Thank you to Postpals and others who are sending gifts for Nicole and Lauren. The space under the tree is rapidly filling, and I think we will still be opening them on Boxing Day!

Thanks also to Torquay Grammar School for Girls, who raised Ł700 for Nicole from a sponsored walk from Brixham to Torquay in the summer. The money will go towards vital equipment for Nicole, possibly a wheeled standing frame for home. We are also grateful to Torquay Round Table, who part funded the cost of Nicole's new wheelchair to the tune of Ł700.

Happy Christmas to you all, and a Happy and Healthy New Year!

Love from Allan, Sara, Nicole & Lauren xxxx

Thursday, November 25, 2004

Hi everyone.

As you can see from the new pictures, we made it to Walt Disney World for Nicole’s Wish trip!

Thanks to the kindness and generosity of friends, family, and many people we will never meet, Nicole was able to meet all of her favourite characters, visit all of the major theme parks, and feed the dolphins at Sea World.

When we started fundraising in March this year, we had no idea if Nicole would ever be well enough to travel, or if she would be able to get travel insurance, but 8 months on, you have made her dream come true with the trip of a lifetime! Nicole and her family’s heartfelt thanks go out to all of you.

After an overnight stay at the Gatwick Hilton, we woke up to a 3 hour delay to our flight. Luckily we were offered the facilities of Virgin’s VIP lounge. We didn’t see anyone famous, but were greeted with a bacon butty and champagne! 9 ˝ hours later, we landed at Orlando airport excited and tired! We had missed our greeter at the airport because we were late, and had to arrange our own transfer to Give Kids the World Village in Kissimmee where we would spend our first week.

The village is a very special place for children in Nicole’s condition, and welcomes families from all over the World for a fun packed week in the sun. They have 98 villas, which are permanently full, and they provide theme park tickets, meals and transport. They also have 3 trains, 2 swimming pools, mini golf, and an ice cream palace open from breakfast to supper, the castle of miracles, a huge play area, and a carousel! You can find out more information and see pictures at www.gktw.org.

Our 2 bed, 2 bathroom villa was very nice, and included a welcome pack of snacks and treats. It also had full kitchen and laundry facilities, and free pizza delivery. The weather was good most of the time, with temperatures in the 70’s and 80’s. It was just right, without being too hot.

I will not list everything that we did, as it will take too long! We did have a very busy schedule, but managed to see everything we wanted too. On the first day we picked up our hire car and took it easy around the pool to recover from the trip. Grandad and Patricia had already been in Orlando for a few days, and came to meet us at the village. Lot’s of the Disney characters visit the village to give the kids some quality time with them, rather than fighting the crowds at Disney! Today Bear in the Big Blue House came and sang some songs with the children, and posed for photos and autographs.

The next day we hit the theme parks! In our first week, we went to the Magic Kingdom, Universal Studios, Animal Kingdom and Sea World. Favourites at the Magic Kingdom included the parades, fireworks, Dumbo, Pooh Bear, Peter Pan, The Jungle Cruise, and Buzz Lightyears Space Ranger Spin, which involved firing your laser cannon at all the targets to defeat Zurg, and get the highest score. I think this ride had about 10 visits over the fortnight! Nicole was treated like a Princess, and got to jump all of the queues, and meet all of the characters personally. It was just a shame that she was frightened by most of them! I think Pluto and Goofy were her favourites. It did mean that Daddy got to meet all of the Disney Princesses, and get their photos and autographs!

Favourites at Universal were the Barney Show, E.T. ride, and Jaws which Nicole went on twice. Mummy, Daddy and Nanny enjoyed Back to the Future, Shrek 4-D, and especially the Revenge of the Mummy rollercoaster (very scary!). Today was Daddy’s Birthday.

Animal Kingdom is a fantastic park, and included the Tarzan Rocks show, and the superb Festival of the Lion King. The adults got soaked on Kali River Rapids, and the girls loved the Kilimanjaro Safari, where we saw Elephants, Lions, Giraffes, Alligators, and many other animals. The day was finished off with Mickey’s Jammin’ Jungle Parade. It was also the day that Nicole’s Cousin Tonitia, Auntie Andrea, and Grandma met up with us after arriving the day before. Today was Auntie Andrea’s Birthday.

Sea World was also a great day. It was a bit more relaxed than the other parks, and had the wonderful Shamu Adventure show, where the killer whales get half of the crowd soaking wet, and throw their instructors 30 foot in the air! Unfortunately the Dolphin Show was closed for refurbishment, but Nicole did get to feed the Dolphins at Dolphin Cove. The adults enjoyed the Journey to Atlantis water ride, and Daddy managed to have 4 rides on Kraken, the huge rollercoaster at Sea World. Another highlight was the Clyde and Seamore sea lion show, which Daddy managed to get a starring part in, much to Nicole’s amusement, when I got splashed! Today was Lauren’s 2nd Birthday. 3 celebrations in a row!!

We then had a rest day and did some shopping, before we moved to our 4 bed, 3 bathroom villa for the second week. The villa was provided by the Christian Lewis Trust (www.childrens-cancer-care.org.uk), a fantastic charity set up to provide support to children with cancer and their families. They helped us to arrange the whole trip, from booking flights and accommodation, to providing information on all that Orlando has to offer. The villa took our breath away when we walked in, and gave us a great base for another busy week!

In the second week, we went to Epcot, MGM Studios, Universal Islands of Adventure, Typhoon Lagoon, Arabian Knights, and revisited Magic Kingdom several times!

Epcot didn’t offer too much for the girls, but they did enjoy Spaceship Earth, a slow moving ride through our history of communication, which takes place inside the huge globe that is the landmark of Epcot. They also took a boat ride through our history of working with the land. The adults went on Mission Space, a new ride which simulates a shuttle launch, along with the feeling of weightlessness! This one was a bit too much for Grandma, who nearly had to reach for the sick bags!! We were disappointed to miss Test Track, but just didn’t get time to go on it. We also missed most of the World Showcase Lagoon, but did manage to have a meal in the Rose & Crown, before watching Illuminations, Epcot’s fantastic light, laser and firework show.

One evening we went to the Arabian Nights dinner show with Nicole and Tonitia, whilst Grandma and Nanny looked after Lauren. The fairytale show involved over 60 horses, and included chariot races, acrobats, and a “unicorn.” The girls really enjoyed it, and got to pet the horses afterwards. Mummy and Auntie Andrea also got to enjoy unlimited wine! I was driving .

MGM Studios was another good park for the girls, despite going on one of the busiest days of the year. I wish someone had told us it was their Super Soap Weekend, where all of the stars of America’s biggest soaps turned up, along with half of Florida!! Favourites included Beauty and the Beast live on stage, Playhouse Disney Show, and the Voyage of the Little Mermaid Show. Adults enjoyed Muppet 3D, the Rock and Rollercoaster, and the Tower of Terror (did I say enjoy!). In the evening was Fantasmic, another superb light, laser and fireworks show that only Disney could put on. Unfortunately, Nicole and Lauren were starting to get a phobia for fireworks, and sat this one out whilst clinging on to Grandma outside!

Mummy and Daddy did manage to negotiate one day off, and enjoyed the morning at Typhoon Lagoon, followed by an afternoon at Universal Islands of Adventure, where we rode all of the big rides including the Incredible Hulk Rollercoaster, Adventures of Spiderman, Duelling Dragons, and Dr Doom’s Fearfall. Most of this was during a 2 hour thunderstorm! It did mean that the queues were short though, and we could get straight on with no wait. No one else seemed keen to ride the coasters in the rain!!

On our last day we had a character breakfast at Animal Kingdom with Donald Duck, Goofy, Pluto and Mickey, followed by another Safari. Nicole and Lauren clung on to us for dear life, but we managed to grab a couple of quick photos for the album!

Overall it was a fantastic holiday, and we wish we could have stayed longer, but we live in hope that we will be able to take both girls back again one day, and enjoy it all over again.

Sorry for the length of the update, but I am sure some of you will want to know all the detail, and it will act as a good record for ourselves. I will try and update the pictures as often as I can. I have over 200 to choose from!!

Next week we are in Bristol twice. On Monday we see the spinal surgeon to discuss further surgery on Nicole’s spine to lengthen her rods, and on Thursday we have an MRI scan, and will speak to the physio’s to monitor the effects of the botox injections in Nicole’s legs.

Thanks again for your continuing support. We all appreciate it.

xxxx

Saturday, October 23, 2004

Hello again.

Wow, another month gone already, and only a week to go now until Nicole’s Wish Trip to Florida!! Needless to say, the girls are getting very excited, and with half term this week, I am sure we will be on that aeroplane before we know it!

The last 4 weeks have been fairly uneventful, and Nicole has managed to be at school almost fulltime. I suppose the big event this month was the Botox injections Nicole had to have in her legs. The operation was done as a day case at Bristol Children’s Hospital, and is part of her new intensive physio regime. The purpose of the injections is to paralyse certain muscles in Nicole’s legs, so that they are easier to straighten. This will help her with her sitting balance, and to make it more comfortable for her to stand in her frame with leg callipers on. She is likely to have to wear her callipers all day soon, and must stand as often as she can. Despite this, she may still require surgery on her hips, as lack of physio has made it difficult for her to stand completely straight.

We have a busy half term planned, and will be catching up with many friends. On Tuesday, we hope to meet up again with Jamie and his family from Teignmouth, and Matty and Family from Cornwall (see links). On Wednesday we will be going to Bristol. Not to the hospital for a change, but to the Hippodrome to see the new Mary Poppins show, which should be a good day. Next Sunday, Nicole and Lauren are going to their Cousin Tonitia’s house for a Halloween party. Nicole has a lovely black and grey witches outfit and hat, and Lauren will look cute as a pumpkin!! I will try and get a picture uploaded before we go away. In between, we will try and pack for the holiday!

I went to the school this week for parent’s evening, and Nicole’s new teacher Mrs Jenkins is pleased with her progress. She is doing very well academically, and is up with the standard of her classmates. She just needs to increase her independence in the classroom. I will now drop her off at the class door, and she has been told to be more forceful when she needs people to help her, or get out of the way!!

I hope you like the new photos. I make no excuse for including Lauren on the latest pictures, as she often gets left out. She is growing up fast, but don’t be fooled by that innocent grin! She has a very stubborn streak, and is constantly demanding attention. This is no doubt a result of Nicole’s illness, and the amount of care and time we have to dedicate to her. She love’s to help Nicole though, and now does certain tasks such as taking her toothbrush, juice or toys to her, and gets very irate if someone else tries to do it!

We have purchased a new swing set for the garden for both of the girls to enjoy (see photos), using some of the funds from “Nicole’s Wish.” We have missed the best of the summer weather, but on a good day they have great fun on it. The seat is specially adapted for disabled children, and gives Nicole the support and security she needs. It used to be one of her favourite things to do at the park, but her paralysis has left her unable to use a normal swing, so it will be a great boost to her leisure time.

Nicole’s new wheelchair has also arrived at last, about 3 months late! We hope to take delivery of it on Monday, and will take it to Florida if she can master it in a week. It has snake spoke guards, and front castors that light up when she moves! We hope that it will give her another boost, as for the first time this week, she got upset about having to use a wheelchair all of the time. We would like to thank Torquay Round Table, who have helped us by funding part of the cost of the chair.

I will not have chance to update again before we go away, but will try and get a picture of the new chair, and the girls in their Halloween outfits, if I have time.

Until next time …

M-I-C-K-E-Y M-O-U-S-E !!

Monday, September 27, 2004

Hello!

We are back online, and ready to update you all!

Thank you for all of your messages, it was great to log on again and see that your support is as strong as ever. We have had a busy few weeks, and have lots of news to bring you up to date.

We are now in the new house, and have settled in well. It is a strange feeling, almost as if we have been here for years, it just feels so right. We knew that we were taking a huge financial risk moving to a bigger, more suitable property. However, one look at Nicole wheeling her chair around the garden with a massive grin on her face was all the evidence we needed, to know that we have done the right thing. As expected, Lauren didn’t settle down so well, and spent most of the first week tucked up in bed with us! She still wakes up a couple of times a night, but at least we can get her up the stairs without screaming now. Her bedroom is a dormer room upstairs, and she has her stair gate on her door, so may feel a bit isolated. She will probably grow to love it over the next year or so.

Nicole’s room was already purple, so she is happy, although we intend to decorate it for her soon. We have bought her a Disney Princess border, and will paint it pink and lilac to match. Our room is bright pink, so also needs a makeover when we get time! We have 2 downstairs bedrooms for Nicole and us, and 2 bedrooms upstairs, one for Lauren and one for the boxes! We are having the toilet converted into a shower room, that Nicole can access in her chair, a low level sink will be put in Nicole’s room, and the rear of the property will be ramped for easy access. The girls also have a playroom downstairs, so we are able to keep all of the toys in one place! The garden is completely flat, which is great for both of the girls.

Nicole is back at school, and really enjoying it. She likes her new teacher Mrs Jenkins, and has managed to keep her carer Barbara Dunbar, who has moved up to Class 3 with her. Her old teacher Mr Wallace popped into the school for a couple of days last week, and was mobbed by all of the children. He spends 6 months in France every year, and will be back in January, when Class 2 starts Reception.

We also picked up our Motability car last week, a Renault Grand Scenic, which we will have on Lease Contract for 3 years. It will hopefully give us trouble free motoring, and enable us to transport all of our equipment for days out, and trips to the hospital.

Nicole’s eating is still steady. She has the same every day, but we don’t mind as long as it is something. We were afraid that she might go downhill when she went back to school, but the teachers are delighted to tell us every night that her lunchbox is empty! Breakfast is always a bowl of shreddies; lunch is marmite sandwiches, crisps, a cake and yoghurt. Tea will always be chicken nuggets and smilie faces.

The best news we have had over the last few weeks is that we have managed to get travel insurance for our trip to Orlando, Florida!! Thanks to Jordan who is in Nicole’s class, his mum spoke to a colleague at the local Solicitors, who approached Norwich Union, and they accepted Nicole’s medical certificate, and her Consultants advice that she is fit to travel. We are now able to start getting excited about the trip, and as you can imagine, Nicole is counting the days! This will be the culmination of a lot of hard work and fundraising by friends, family, and many other people that we will probably never meet. We would, therefore, take this opportunity once again to thank everyone involved. You are about to make a brave little girl and her family very happy indeed!

I hope that you like the new pictures, and will try and update them more regularly.

Take care Allan, Sara, Lauren & Nicole xxxx

Sunday, August 29, 2004

Hi All.

Just a quick update before the laptop goes in the box for the long trip (about 5 minutes!) down the road to our new bungalow. Yes we are on the move at last, on Tuesday 31 August. It seems like we have been packing for weeks, and I guess in reality we have! I will not have Internet access for 2-3 weeks after the move, so will catch up with all of your messages as soon as I can.

As most of you will know, we have just got back from one of our regular trips to Bristol. We had a busy couple of days, seeing the back man on Wednesday, the leg man on Thursday morning, and the Tumour woman on Thursday afternoon!!

Our first stop was Frenchay Hospital, where we saw Nicole’s spinal surgeon, the one who pinned her spine together after it collapsed during her biopsy last September. He took x-rays, and was surprised at how far Nicole’s back had curved. There is a danger of it folding forwards or sideways, if no action is taken. He was hoping to have her into theatre sometime in September to lengthen her current rods, but will now wait until the New Year, when he may have to pin the whole of the spine to stabilise and correct it.

It will also give her body more time to recover, as he would like her to have put on a bit more weight before surgery. This is because there is a danger of the metalwork he has to put in, breaking through the skin. For those of you who know Nicole well, or have read the previous journals, will know that fattening Nicole up for Christmas won’t be an easy task! Saying that, her eating is starting to pick up, but she still has a long way to go.

In the afternoon, we had a break from the hospitals, and visited the Bear Factory, courtesy of www.postpals.co.uk where Nicole got to choose a bear, have it stuffed, kiss and put a heart in it, and choose some clothes for it. As Lauren stayed in Torquay (and slept through the night!) with my sister, Nicole also choose a bear for her. Nicole’s choice was a pink sparkly Unicorn (what else?!) with a swimming costume, sunglasses and hat! And for Lauren she choose a Teddy Bear with a bikini! They are both very nice, and I will upload a picture when I get chance. After that, we went upstairs to the Haagan Dazs café for an ice cream. Thank you very much to Postpals for kindly arranging it for us.

On Thursday morning, we popped into Sam’s House (CLIC), where we stayed earlier in the year, to see Corinne and her team, and had a quick cup of tea. Then it was off to Bristol Children’s Hospital to see a consultant about the problem with Nicole’s legs. It has become increasingly difficult to straighten them as her muscles tighten up, which will cause her problems with sitting and standing. The Consultant has told us that it is unlikely that Nicole will ever be able to walk, which she may have been able to do with leg callipers, but he would like to make it as comfortable as possible for her to sit and stand. Exeter was considering cutting the tendons in her legs, but Bristol is keener to try Botox! This will involve injections of Botox into certain muscles in Nicole’s hips and legs, to relax them into a straighter position. We have been given time to think about it, and if we go ahead, they will carry out the procedure as a day case in the next month or so.

Next stop was the Bristol Royal Infirmary for her MRI scan. It took much longer than normal, as they took all the scans once, then had to inject a dye into Nicole to take them again to contrast them. Nicole has always been good at lying still for her scans so she doesn’t have to have general anaesthetic, but having a Doctor come in half way through and stab you with a needle, is not the best way to keep her settled! Needless to say, despite some tears, Nicole took it in her stride, and came out relieved it was all over about an hour later. We had a call from her Oncology Consultant on Friday afternoon, and she said that her initial impression from the pictures was that there was little change in the size or activity of the tumour. The scan would have to be reported fully, but we wanted some idea of how things were going, as her Consultant will be on holiday this week. From our discussion, we will take that as good news and are now looking forward to getting into our new house on Tuesday (yippee!!).

Our house is starting to resemble a storage facility with boxes everywhere! We are getting there however, and if we can stop Lauren unpacking stuff as fast as we can pack it, we may be ready for the removal men on Tuesday morning!!

Nicole is back to school on 2 September, and can’t wait to see all of her friends again. They won’t recognise her now the feed tube has gone, and her hair is growing back so well. Somebody even told her what a nice haircut she had the other day. I didn’t have the heart to tell them the truth!

Until next time Allan, Sara, Lauren & Nicole xxxx

Wednesday, August 4, 2004

Wow, how time flies! Over a month since the last update (sorry!).

Nicole is doing well, and has broken up from school for the summer holidays. July has been a very busy month, and we haven’t even moved house yet!! At the beginning of July, we tried out some new wheelchairs for Nicole, as she is doing so well at manoeuvring it. We have ordered a Kushell Kid chair for her, which is lighter, and easier to propel. It will be a metallic blue colour, with curly snakes on the spoke guards. We are also hoping to get castors on the front, which light up when they move!

She has been to several birthday parties, including her cousin Tonitia’s 6th Birthday, where they went Ten-Pin Bowling. We also had a BBQ at Tonitia’s house on the weekend before her birthday, which Nicole really enjoyed.

On the 12th July, we went to Nicole’s school, to say goodbye to her teacher Mr Wallace, and meet her new teacher, Mrs Jenkins. We also received her school report for her first year which was excellent, despite her only being able to attend 126 of the 205 school days. Comments included: -

“Nicole has settled well into school life and routines. When she has extended periods of attendance at school, she quickly develops self-confidence, and becomes aware of the different activities open to her.”

“Nicole has good mathematical understanding, and uses her developing mathematical ideas to solve problems. Nicole is confident with the number system beyond 20, and can order, read and write numbers.”

“Nicole is becoming increasingly independent in choosing her favourite activities, and ensuring she has access to them. She is beginning to find ways to solve problems herself before asking for adult help, and is becoming more independent in the classroom.”

“She has good concentration, and will persevere with a difficult task until she has mastered it. She is always interested, excited and motivated to learn and take part in all activities.”

“Nicole plays well with other children, and is a very popular partner in other children’s games. She works well individually, and in a group.”

I don’t think we could have hoped for better given what she has been through in the last 10 months, and we are very proud of her.

Nicole had another wheelchair course on the weekend of 17/18 July, and was able to join in a lot more activities this time, as the last time she went she was very weak, and still on treatment. Skills learnt included tipping the wheelchair to get up and down kerbs, crossing the road, and negotiating ramps. She is still a bit young to master these skills, but it was good for her to see what is possible, and see older children who were able to carry out these tasks. It is also good for her to meet and see other children who have mobility problems.

You will notice something different about Nicole in some of the newer pictures. She has finally had the NG feeding tube removed (hurrah!). On the 26 July, we had to get her photo taken, to replace her passport for the trip to Disney in November. Hoping that she would not have her tube in November, we thought it would be a good idea to take it out for the photo. On the way home from town we gave her an ultimatum. She could start eating a bit more, and would have to take her medicines orally, or she would have to go into hospital to have the tube replaced! After a bit of a struggle, we managed to get her medicines down her, and she is now taking them with very little fuss. I know it seems a bit harsh, but anyone who knows Nicole, would realise drastic action was needed! Her eating is starting to pick up, and we hope that her weight hasn’t dropped when we get her weighed later this week.

The main concern with Nicole at the moment is the stiffness in her legs. It is becoming more and more difficult to straighten them, despite 30ml of Baclofen muscle relaxant medicine a day. This makes it hard to get her dressed, and for her to sit on the floor comfortably. It has also meant that we have had to stop all physiotherapy, which involves straightening her legs. This stops her going into her standing frame, and sleep system, and could cause her difficulties in the long term. We are waiting to hear from the Orthopaedic Surgeon in Exeter, to see what can be done about this, but unfortunately he has taken the whole of August off on holiday! One possibility is to cut the tendons in her hips and knees, to reduce the tightness. This seems like a rather drastic course of action, but we will obviously have to consider it if it is going to help Nicole.

We have just got back from a short holiday at Weymouth Bay Holiday Park (Haven), where we visited Nanny and Grandad, and Uncle Ian and Aunty Tracy in Portland. It was good to see them for a few days, as they don’t get to visit Nicole very often, so they enjoyed some quality time with her at their bungalow, walking along the seafront at Weymouth, and spent a day on the park with us, where Nicole went swimming in the outdoor pool. We had very nice weather, despite a terrific thunderstorm on our last night, which kept Mummy and Daddy awake from 3am to 4am. Nicole and Lauren slept through it!!

Our Motability car isn’t ready yet, as Renault shut down the factory for the whole of August! The current estimate is that we will receive it in October.

We had also expected to move house by now, but that is also delayed! We were due to exchange on the 16 July, but the people at the top of the chain are moving into a new house that hasn’t been completed yet! We eventually exchanged contracts on 26 July, which was a relief, as our house was due to go to auction on 27 July if we hadn’t sold. There was a real risk that if we missed the auction and our buyer pulled out, we would be back to square one. The completion date has been agreed as 31 August or earlier if all parties are ready. We are disappointed that Nicole will not get full use of the bungalow for the school holidays, as she is likely to be going back to school just after we move in, but we are pleased that we will be moving soon.

We have clinic in Exeter tomorrow with our Consultant from Bristol. No doubt we will discuss the problem with Nicole’s legs, and when further surgery is likely to happen on her back (hopefully next year). We are then seeing the Spinal Surgeon at Frenchay Hospital on 25 August, and Nicole has her next MRI on 26 August.

Nicole is a member of Postpals (www.postpals.co.uk), and they have kindly arranged for Nicole and Lauren to visit the Bear Factory in Bristol whilst we are up there on 26 August, where they get to choose the skin of the teddy bear, kiss a little heart before it is put in the bear, see it made, and then take the bears home. This will be followed by a trip to Haagen Dazs Café for ice creams all round. I think I may get to eat 2 unless Nicole really surprises us!!

Postpals are always looking for more Pals to join them, so if anyone knows a child who is ill, disabled, on or off treatment, please let us know, so that we can pass on their details to them.

Until next time, have a great summer, and have fun.

Love Allan, Sara, Nicole & Lauren Biddulph xxxx

Thursday, July 1, 2004

Hello again! Thank you to April from Caring Hearts and Hugs for her gentle reminder to do an update!! Every day I say “I’ll do it tonight, I’ll do it tonight,” but something always crops up. Hopefully, when you read this journal, you’ll see why I have been so lapse, and forgive me (please!).

Firstly, Nicole’s health. She is doing very well, and is at school full time when she is not doing Physiotherapy, Hydrotherapy, Wheelchair assessments, Standing frame assessments, or Hospital Clinics! She has made some good friends, and her teacher Mr Wallace has given her a great start to her education and social skills. Kids just seem to adapt so easily to Nicole’s disability. The other morning, several girls were skipping in the playground, something Nicole used to love to do. Seeing Nicole was left out, her friend Charley got Nicole to hold onto the ends of the skipping rope, whilst she wrapped the rope around her waist, and ran around the playground like a horse and cart!

The nose tube is still in, and eating is slow. We will get advice at her next clinic to see how we can overcome this. We feel that Nicole has become lazy, as she wasn’t the best eater before she was ill. There is also the issue of taking her medicines, which would have to be orally if the tube is removed. Nicole is wise to this, and has become quite attached to her tube!

On the 22nd June, Nicole had her “wiggly” lines taken out at Exeter Hospital. This feels like a big step, and makes handling her a lot easier, and will help with hydrotherapy. We didn’t tell her what was happening until we got to the Hospital, at which stage she became very anxious. Luckily they were able to give her anaesthetic through her lines, rather than using the mask, which freaked her out last time. The operation went well, and she was back at school 2 days later. She just has a small scar left, which is covered by a waterproof patch, which will soon fall off.

We have an appointment at Frenchay Hospital on 25 August to see the spinal specialist, and to discuss further surgery on the Harrington Rods in Nicole’s spine. We are also waiting for an appointment at Bristol Children’s Hospital on 26 August, for her next MRI scan.

As you can see from the pictures, the Birthday Party went superbly well! Nicole looked absolutely beautiful in her Blue Cinderella dress and tiara, and Lauren was quite cute as Piglet also. Around 34 children came to the party, which was a Disney themed fancy dress disco, which was kindly provided by Andrew and Lorraine Tonkin. They travelled down from East Devon especially, and the only payment they would take was 2 x McChicken Sandwich and chips! We also had Elfic the Jester, who put on a fabulous one-hour show of juggling, plate spinning and unicycling, which kept the kids spellbound! Everybody then tucked into a MacDonald’s Happy Meal, with (appropriately) a Finding Nemo toy, to keep with the Disney Theme.

Nicole had some wonderful presents from all of her friends and family, and also got a lovely handmade Disney cross-stitch quilt from Solak. Stitchers from all over the country made it, and it was put together by Kay Jones from Torrington, who drove down to Torquay to hand deliver it on Nicole’s birthday. Thank you girls for a wonderful present.

On Father’s Day, Sara got me tickets for the “Last night of the Proms,” at Cockington Village, which was great fun. Everybody makes an effort with tables, candelabras, picnics, and of course alcohol. We donned our union jack hats and flags, and joined in the finale of Land of Hope and Glory, Jerusalem and Rule Britannia, accompanied by a spectacular fireworks display. The rain threatened to spoil it, but the sun came out just before the concert started. A similar day to Nicole’s Wish Walk if I’m not mistaken!!

We have decided to get a new vehicle on the Motability scheme, as we need more room to accommodate Nicole’s wheelchair, Lauren’s buggy, and still have room for us! We have ordered a Renault Grand Scenic, and hope to take delivery in the next few weeks.

We also felt we didn’t have enough to deal with at the moment, so we are also moving home!! To make it easier for Nicole, and to increase her independence, we have found a bungalow that has 2 bedrooms on the ground floor, and would also give her access to the garden, lounge, playroom, kitchen/diner and bathroom. We had an offer on our house on 10th June, which we accepted, and hope to move in the next few weeks.

The trip to Disney in Florida is also progressing. We have now booked flights and accommodation for two weeks in November. Sara’s mum will travel with us, and my mum, sister and niece will follow a few days later. We will not know until 4 weeks before we go if we can get insurance, so fingers crossed for October, as that is the only thing that will stop us going if Nicole stays well. We will stay in a villa at Give Kids the World www.gktw.org in Kissimmee for the first week, and a 4-bed villa with pool owned by the Christian Lewis Trust www.childrens-cancer-care.org.uk for the second week. We also have a respite weekend planned for the August bank holiday at Manorbier Country Park in Tenby, South Wales.

As you can see, we have been very busy, and will be for the next couple of months. I will try my best to do updates when I can, and thank you for sticking with us. Thanks for all of your, cards, gifts and messages of support, they really do make a difference.

Take care Allan, Sara, Lauren & Nicole xxxx

Wednesday, June 9, 2004

Hello everyone (new pics added to photo album)

Nicole had her scan on the 27 May, and we saw our consultant in Exeter on the 3 June for the results. The tumour has shrunk slightly again, but it seems unlikely that it will disappear altogether. The most significant difference this time was the appearance of the tumour. The pictures from the scan were “less bright” than last time, which would indicate that the level of disease and swelling has reduced. This is to be taken as a good sign, and means we are moving in the right direction.

Nicole’s consultant now needs to speak to the spinal surgeon in Frenchay Hospital, to discuss any possible surgery on the tumour, and on the rods in her back. It may be best to leave the tumour alone, rather than aggravate it, but the rods will need replacing at some stage. It has also been recommended to remove her Hickman “Wiggly” lines, as they are only used for the occasional blood test, and still pose an infection risk. This should happen in the next few weeks, and feels like another step in the right direction.

Nicole is continuing to improve her eating, and has said she is hungry on several occasions. Something that we haven’t heard for a long time! She has had marmite sandwiches for the first time this year, and is also eating crisps and chocolate. She is still on 500ml feed overnight, and 300ml during the day. We hope to be able to cut out the daytime feed altogether soon, which would be a big help at school, and when we have days out in the summer.

We had a relaxing half term break, which included a trip to see the penguins and seals at Living Coasts in Torquay, with Marcus, Owen & Nadia. Nicole had her arm painted with a seahorse, made a badge, and a basking shark out of paper and a milk bottle! We also had a great time on the Bank Holiday weekend, with a barbeque at Jamie’s (see link) new house in Teignmouth, and we also got together with Matty (see link) from Cornwall. We had a lovely walk along the seafront (See main Pic), had an ice cream on the pier, and spent some time playing the arcade games. We then went back to Jamie’s house for steak, pork chops and burgers!

Yesterday Nicole had her first session of Hydrotherapy at Torbay Hospital. She was very frightened about going in, because she hasn’t been since she was paralysed. We also had to cover her wiggly line, and she had her nose tube in, so she was a bit of a handful! She used to love her swimming, and was getting very good at it. It took 15 minutes to get her into the pool, but 40 minutes to get her out, as she was enjoying it so much!! I held her throughout, but hopefully we can progress to a stage when she can support herself with flotation aids.

Everything is now focused on her Birthday party this Sunday (13th). Her actual birthday is on Monday 14th June. We are having a Disney themed fancy dress Disco at Shiphay School Hall, with an Entertainer, and McDonalds Happy meals. There are 34 people coming, and Nicole is getting very excited. She asks about 20 times a day, how long it is until her party! It is a lot of children, but it will be great to give something back to all of the people who have been so good to us over the past 9 months. I will try my best to do a birthday update next week with new pics.

The new pictures this week include some of the many good friends that Nicole has made at hospital, and in her class at school. Nicole is enjoying school so much, and couldn’t wait to get back after half term. I don’t know how we are going to cope for 6 weeks over the summer!

Thanks for checking in, and we look forward to seeing some of you at the party on Sunday xxxx

Tuesday, May 25, 2004

Hello again – Scottish update!

We made it to Malcolm Sergeant House (see pics) in Prestwick, Ayrshire, for a week of rest and relaxation (Yeah!). The house is fabulous, has a large playroom, is located right on the beach, and backs onto Prestwick golfcourse, where the first British Open was played. We all enjoyed it, and hope to go back during the summer holidays. The week went like this :-

Saturday – Left Torquay for the half hour drive to Exeter Airport. We could only manage one case with all of the other equipment we needed for the girls. Case was very full, and very heavy! We flew with FLYbe on a fixed propeller plane, on the 1 Ľ hour flight to Glasgow. We were picked up from the airport by minibus, for the 1 hour drive to the coast. Nicole loved the flight, especially the acceleration when we took off. Lauren was herself, and screamed most of the way. Doesn’t bode well for Florida! Sergeant were very helpful, and arranged for a delivery of nappies and Nicole’s milk feed straight to the house, which lightened the load. In the evening, we played Bingo, but were the only ones not to win a prize.

Sunday – Got a lift on the minibus into Ayr (about 5 miles), to go to Ayr market at the racecourse. Nicole bought a game for the Playstation (Croc). In the afternoon, she played the float or sink game in the playroom. The house also has a lovely garden, with swings, slides, and a blue “road,” which Nicole enjoyed negotiating with her wheelchair. In the evening, they did cake decorating, with icing, smarties, jellies and sherbet. They looked very nice but didn’t get eaten! All meals were included in the holiday, and at nine o’clock every night was tea and cakes. Lauren particularly enjoyed this part, and was rarely in bed before 10 o’clock!

Monday – Caught the train from Prestwick to Ayr. Train station was only a short walk from the house, and only 2 stops to Ayr. It was quite a nice warm day, and the girls donned their sunglasses (see home page pic!). Sara did quite a bit of shopping, mostly clothes for the girls, and presents to bring home. We were given a packed lunch, and walked down through the town to the seafront, where the girls played in the sand and on the swings, before stopping for a bite to eat, and to write the postcards. Ayr is a beautiful seaside resort, and has a fantastic sandy play area just off the beach.

Tuesday – In the morning, Sara and I went for a swim at a private pool, which is used by Sergeant once a week for their guests. The ladies house was in a very plush area of Ayr, and we discovered that her ex husband is very big in the sausage industry!! We left the girls at the Prestwick, where they were looked after by the staff, as it gave us a short break, and Nicole hasn’t been swimming since she lost her mobility. In the evening, we all went Ten Pin Bowling. Nicole hasn’t played before, but enjoyed rolling the balls down the ramp. She did really well, and scored a very impressive 94!

Wednesday – Another nice sunny day, we went down the West coast to Culzean Castle, an outstanding building as you can see from the pic in the photo album. First of all we went to Swan Pond to feed the ducks, and then to a play area to have our packed lunches. The play area wasn’t really suitable for Nicole, and she got a bit bored and frustrated. After lunch, we went to the castle, and had a good chance to look around. Nicole was kept amused, as the National Trust staff had hidden a small lego figure in each of the rooms. An inspired idea, as the kids were kept amused, while you admired the décor! On the way back, the driver stopped on a hill called “Electric Brae,” which is a well known local landmark. The idea is to turn off all of the power in your vehicle, and be amazed as the vehicle is “dragged” up the hill. It would appear that the road is an optical illusion, with the slight incline on the hill actually being a downwards slope! Bit of fun, but I’m sure the locals aren’t impressed as all of the vehicles crawl up the hill while they are trying to get to work!!

In the evening, the parents had their big “Night Out,” heading into Prestwick, whilst babysitters looked after the kids. We were allowed out from 7pm to 10pm, but as we didn’t get out until 7.30pm, we tried to push our luck by ringing the house at 10.40pm to see if we had to come home. We were assured by the manager that the babysitters had gone home at 10pm, and our presence was needed ASAP, so we headed straight back with heads bowed and tails between our legs!! To make up for it, we ordered Indian Takeaway, and kept the manager up past midnight. A fact that the female staff enjoyed hearing in the morning.

Thursday – In the morning we went to Kidzplay, a soft play area in Prestwick, just down the road from the house. The girls both enjoyed time in the ballpool, but again Nicole was limited to what she could do. In the afternoon, we did a treasure hunt along the seafront, looking for pebbles, shells, daisies and the price of hotdogs in the beach hut! Thursday evening is DVD night, and the kids watched Finding Nemo, with a feast of hotdogs, popcorn and chocolate!

Friday – Because of the rush hour traffic into Glasgow, we had to leave at 7.30am! to get to the airport for our 10.40am flight. A bit of an early start for the girls, but we managed it.

The House offers a great respite break for any family with a child that has suffered cancer. It caters for up to 9 families, but during our week, there were only 3 families staying there. We would recommend it highly to anyone else in our position.

Nicole has been to school every day since we got back 10 days ago, and has had a friend round to play after school for the first time. She had great fun playing with Charley in the garden, before coming inside for tea. Both girls had the same, and Nicole managed to eat a smiley face, and chicken nugget. She is still on an overnight feed, but we have dropped her daytime feed to 300ml after lunch, to hopefully make her feel hungry.

We are going to Bristol on 27 May, for an MRI scan, which will be Nicole’s first scan post treatment. We are just praying that the tumour will have stayed put, and Nicole can continue with her recovery. Her hair has started to grow back, and she has a fine covering all over her head. Her eyelashes and eyebrows are also making progress. We hope to get together with Jamie and Matty at the weekend for a BBQ (see Links), who we met during treatment in Bristol.

Bye for now. Allan, Sara, Nicole & Lauren xx

Thursday, May 6, 2004

Hello. Sorry again for lack of updates, but as you can see from the new pictures, we have been out and about enjoying ourselves. Who can blame us after 7 months in hospital!? Nicole spent a few days in Exeter hospital a couple of weeks ago, caused by an unknown infection following her Chemo. We are hoping that these trips will now become less frequent, as her body recovers from the treatment.

She came out of hospital on the Saturday, which was the start of a lovely hot and sunny weekend. We got the girls home and changed, and went straight back out to spend the afternoon at Paignton Zoo. Nicole had a great time, and even got to ride on the train with Mummy (see photo album). We stopped and had half a lager in the pub whilst Lauren was asleep, and thoughts turned to Florida!

On the Sunday, we went to Crealy in Exeter with Auntie Natalie, my sister Andrea, and cousin Tonitia. Nicole enjoyed watching us on the log flume and roller coaster, but also managed to join in the fun. She went on the Bumper Boats, Carousel, Slides, Swings, and spent some time in the ball pool (main pic). It was another lovely warm day, so we took a picnic, but couldn’t talk Nicole into eating anything. It was just great to be doing something normal.

The following week, Nicole had her first full week of school, which is a fantastic achievement so soon after treatment, and she is loving it! We met her teacher Mr Wallace on Wednesday, and he has no concerns whatsoever with her academically. We just need to build on her social interaction skills, as she has effectively started school 4 times this year!

Last weekend, she had 2 birthday parties on the Saturday and Sunday. Sam’s party at Deep Sea Den on Saturday was a good test for Nicole to see how she coped with going to places she used to enjoy when she was able bodied. She dealt with it really well, and liked watching the other children run around the ball pools and slides. She even spent some time in the ball pool, knocking her friends down like skittles with the balls! Even better, she ate a whole chicken nugget when they sat down to eat after play finished!! Only one, but it’s a start.

Sunday was Jodie’s party, which was another good day. I stayed with Nicole initially, so that I could take her on the bouncy castle. Her laughter as I bounced up and down with her in my arms was music to our ears! We then left her to enjoy the party for an hour and a half, before we were called back for more bouncing! Another step on the route to independence.

On Bank Holiday Monday, she spent the day at Grandma’s with Lauren, which was another touch of reality for her. On Wednesday, we met with her Physio, and tried out some standing frames. We are hoping to get one for school and one for home which allows Nicole to stand upright with support on her legs, bottom and back. It is good for her blood flow, and gives her another view on life.

This week, Nicole has been at school full time, and today classes 1 & 2 had a trip to Paignton Zoo. Sara and I took Lauren, and helped with another group of children, whilst Nicole went off with her friends. She is so independent, and prefers Mummy and Daddy not to be around!

We have just bought a Laptop and desk for Nicole, and she has spent ages on it. It gives her a great workspace out of Lauren’s reach, and she loves playing on her games and the Internet. We have also taken the drastic action of putting our house on the market, as we have found a suitable bungalow, which would be ideal for our needs, with most of the rooms on the ground floor, and a bedroom in the attic for Lauren! Our offer has been accepted, so we just need to get ours sold and we will be on the move.

Sargent Cancer Care have been a great support to us, and have offered us a stay at their Respite House in Prestwick, Ayrshire, so we have taken up their offer to fly from Exeter to Glasgow, and spend a week being waited on. It will give us a good chance to take the girls away on a plane, with Nicole in her wheelchair, but with help at the other end, and only 2 hours from home. It will be a good trial run for a longer trip later in the year we hope.

We have been to see our consultant in Exeter this afternoon, and she is pleased with Nicole’s progress. Her blood count was fine, and her weight is now 15.6 kgs, which is just over her weight when treatment started in September (15.5 kgs). Not bad for someone who doesn’t eat! The next MRI Scan will be in Bristol on 27th May, and we will be back in Exeter on 3rd June for the results.

Meanwhile, we will continue to enjoy ourselves, and spend lots of time with the most determined, courageous, beautiful girl you could ever hope to meet.

Friday, April 16, 2004

Hi all. We have now been to Bristol twice for Nicole’s scans, and to see the spinal specialist, and I wish I had better news for you all.

The CT Scan showed that the tumour had not spread, which is obviously good news, and means that Nicole’s treatment has contained the cancer. However, the MRI scan still showed a mass on the spine, which is what is left of the tumour. Maybe we were expecting too much for it to have disappeared, but when you have seen what Nicole has been through over the last 7 months, you live in hope. The size of the tumour has not changed substantially, but its appearance is different, and it seems to have hard and soft spots. What is not known, is if the tumour still has active cells.

Surgery has virtually been ruled out because of the tumours position, as it is near to the aorta, the main vessel from the heart to the brain. We now have to wait another two months, to give Nicole time to recover from her treatments, and she will then have another MRI scan in June / July, to see if the tumour starts to grow again. This will obviously be an anxious time, as treatment has been stopped. On the positive side, Nicole should spend less time in hospital, and more time at school. Her hair will also start to grow back, and she may recover her appetite (we hope!).

We saw the spinal specialist at Frenchay on Wednesday, but it was a wasted journey. We had a four hour round trip, for a 5 minute meeting, to have a quick look at her back, and to book another appointment for August. Not even an x-ray for our trouble! He cannot commit to any surgery on the spine until the status of the tumour is assessed. If Nicole’s prognosis is good, he will look at putting more permanent rods in her back, but if it is bad, it is probably best to leave things as they are, and not cause her any more pain.

On a more upbeat note, Nicole has enjoyed the last 2 weeks at home. It has been the longest spell we have been together since last September. She has had brief trips to the hospital to have her last chemo, and for blood tests. She also had a blood transfusion yesterday, and is likely to have to go in on Sunday for Platelets. If she is well enough on Monday, she will go to school, which she is looking forward to, as she hasn’t been for a month. Lauren is also sleeping on occasions! We took the drastic action of taking down her cot and putting her in a bed, and it seems to have helped a bit.

Over the Easter weekend, we managed to get out a couple of times. One day Nicole took her new hand propelled trike to the seafront, and pedalled all the way to the end of the pier and back, and all the way from the car to the amusement arcades and back. She was complaining of sore ribs and back the next day though!

We have used some funds from Nicole’s Wish for the first time, to buy her a handheld DVD player and to top up her collection of Disney DVD’s. This has proved very popular, and has been a godsend for the long journeys to Bristol, and when she is in hospital. She borrowed a friends Gameboy console, which has also been a hit, and has gone to top of the list for her birthday presents on the 14th June.

We have made enquiries about our trip to Disney, but the consultant has told us to wait until the next scan before we make any firm plans. It will prove difficult to get travel insurance, until a firm prognosis has been made. However, we have pencilled in the first two weeks of November for the trip, if we get the go ahead.

Thank you for all of your support and messages. We will soldier on, and pray for some good news in the summer.

Take care Allan, Sara, Lauren & Nicole xxxx

Wednesday, March 31, 2004

Hello. Apologies once again for lack of updates, but I have been stuck in Hospital with no Internet access! Many of you will be checking in for updates on our trip to Bristol this week for scans etc. Unfortunately it has been postponed until next week, but more on that later.

We are still reeling from the success of the walk for “Nicole’s Wish,” and hope to be able to make some firm plans to travel to Disney, when we have got the next couple of weeks out of the way. The money raised will be enough for the trip of a lifetime, and any remaining funds will be used to fund improvements to Nicole’s quality of life. This may include specialist play, leisure or mobility equipment, but we can assure everyone that every penny will be spent on Nicole, and will go towards making her life a little bit easier.

As mentioned on the previous journal, Nicole had to go to Exeter after the walk for her last dose of antibiotics, and thankfully her temperature had stabilised enough for her to go to school the following week. She actually managed to go every day, which was great, and even managed her first full day on Wednesday 17th March!

She also enjoyed the weekend, when Nanny, Granddad, Uncle Ian and Aunty Tracy came to visit from Portland on the Saturday. We had a quiet day on the Sunday, which was Mother’s Day, and obviously very important to Sara and the girls. Sara got two gifts on the Sunday, one of which was a Mum mug and coaster, and the other was an inscribed glass mirror about the size of a bookmark. It bought a lump to my throat when I read it, and seemed very appropriate to our situation. It read: -

MUMMY

You mean the
World to me.

You lifted me when
I couldn’t stand.

Your eyes sparkled
When I was happy.

You were beside me
When I was afraid.

You comforted me
When I was sad.

You brought me
Strength when
I was weak.

You gave me your
Wisdom when I was lost.

Mummy, you loved
Me no matter what.

Thank you.

--------oo0oo--------

The following week was not so successful! As expected, the latest chemo, which was stronger than the previous ones, knocked her for six, and wiped out her blood counts. The cocktail consisted of Carboplatin, Epirubicin and Vinchristine (CEV). For those of you in the know, her counts on 22nd March were Haemoglobin 5.2, White Blood Cells 0.1, Platelets 6 and Neutrophils 0.00! For those of you not in the know, they were very low! In fact the lowest they have been since treatment started.

It took over a week, 2 blood transfusions and 2 platelet transfusions before they started to recover. This has left her open to infection, and when she went in for her first transfusion on 22nd March, her temperature was over 38c. She has to be kept in until it has been down for 48 hours, but every couple of days it peaked again. Therefore she is still in Exeter hospital now 10 days later, despite being on 3 different types of antibiotics. It is usual in this situation for them not to find the cause of the infection, and things usually settle down when her blood counts recover, so we hope for good news soon!

We are disappointed that Nicole has missed two weeks school, and if she is not out by Friday, the school will be on Easter break for 2 weeks. She does, however, continue to receive schooling for up to an hour a day in hospital. We did manage to get her out and about a couple times this week, and took her down to The Quay in Exeter, and the Nurses gave her some stale bread to feed to the ducks and swans. We also went to the park, where Nicole went on the swings for the first time since she fell ill last September. She had to go on the enclosed baby swings, but enjoyed it nonetheless.

Back to the Bristol situation. As many of you know, we were due to travel up on Monday / Tuesday, to have an MRI scan to assess the tumour, and get the answers we have waited (but feared) so long for. We were also due to see the spinal specialist at Frenchay Hospital. However, because Nicole would have to be an inpatient as she was on antibiotics, she would need a bed on Ward 34. The ward has been shut for several days as they have the Norwalk Virus, so as there was not going to be a bed available, and Nicole’s temperature and immune system are still volatile, the appointments had to be cancelled. This came as a blow, as we have been building up to this day for a number of weeks.

The plan now is to have her last chemo (CEV again) on Monday, the MRI scan will be in Bristol on Thursday 8 April, and Frenchay will be on 14 April, health permitting! We are expecting to write off most of April with treatment, infection’s etc, and hope things will start to settle down in May!

I hope all of the above makes sense. If not, it is because Lauren had about 4 hours sleep last night in-between coughing, screaming, crying, medicines and milk, but that is a whole different story that I won’t bore you with now! Until next time, take care and keep praying.

Wednesday, March 17, 2004

Hi everyone. Sorry for the delay, but I have only just found time to update the website! Nicole is at school today, and Lauren is at nursery.

Well, what can we say! It rained, they came, they sponsored!! The walk around Cockington Village to raise funds for Nicole to go to Disney, was fantastic. On probably the wettest day of the year so far, we turned up to an empty carpark at 9.45am. We had received several phone calls asking if the walk was going to be cancelled, but it would have been impossible to let everybody know, so it had to go on regardless!

We sat in the car to keep dry, hoping that at least some family and a few friends would turn up. How wrong we were!! About 30 minutes later, the car park was full, and people were struggling to find parking spaces. As they arrived, the stewards ushered everyone to a thatched barn, where they could keep dry until the walk started. We left it until the last minute to get Nicole into her wheelchair, as she would have got soaked.

When we were ready, we went around the corner to the barn, and couldn't believe the number of people there. In total, 210 children took part in the walk, and probably just as many adults. The oldest person there was Nicole's Great Grandma aged 84, and the youngest was Megan's 2 day old brother. There was also a large number of dogs! Rather than spoiling the day, the rain actually made the day, because to see so many people turn up on such a horrid morning, was a very moving experience, and one we will never forget.

The walk took us down the lane towards the seafront, and then right through the arched gatehouse. We continued up past the lakes, and into the park green area. The trail of people stretched as far as the eye good see, and the walk ended at Cockington Court. On arrival, all of the children received a helium balloon provided by Balloon's & Blossom's of Torbay, and sweets and drinks provided by Somerfield, Sainsbury's, Marks & Spencer, Booker's, and Nino's.

The fun continued in the Carey Suite, which was provided free of charge by Cockington Trust, where the children were entertained by a magician, and could get their face's painted. It was a bit of a squeeze, but we managed to fit all of the children in. The adults were banished to the cafe, where they warmed up with hot cups of tea & coffee! Luckily we let the cafe know that we were coming, and they staffed it accordingly, which is just as well considering the weather.

At the end, most of the children received certificates for completing the walk, which were designed by Charlotte, and printed free of charge by Richard & Anne Hopkins at Print Plus. 60 children missed out, because we never expected such a turn out, but we hope to print more in the next few days. Nicole was also presented with her hand propelled trike, which was funded by Bradley's Estate Agents, and had fun riding it around the room.

Unfortunately, we had to go to Exeter Hospital afterwards, so that Nicole could have her antibiotics. She got a bit upset at this, as she had enjoyed the morning so much, and didn't want it to end! We took her trike to hospital, and she pedalled all the way from the carpark to the ward and back. We got home at about 4.30pm, and Nicole went straight to bed exhausted!!

Finally we must say a special thank you to the organisers of the event, Suzanne, Jo, Tracy & Charlotte. We love you all, and will never be able to repay you for the support you have given us. You organised a day that we shall never forget, and I am sure that everybody who came feels the same. Our whole family were completely overwhelmed by the occassion and level of support, and thank you from the bottom of our hearts.

Thank you also to everybody else who helped on the day, and especially all of the children, mum's, dad's, dog's and grandparents for coming, and for your fundraising efforts. Early indications show that a substantial amount of money has been raised for Nicole, and her dream trip to Disney is now a real possibility.

Monday, March 1, 2004

Well, as you can see from the above picture, Nicole made it to school!

To say she enjoyed it would be an understatement, it has given her a new lease of life, and something to focus on other than the next course of drugs. She managed to go every morning for the whole week, which is a miracle.

I stayed with her every day except Friday, as her care at school is not quite in place yet. However, I was sent home by the teachers on Friday, and Nicole coped just fine on her own, with Mrs Tozers help. Her teacher Mr Wallace is fantastic, and leaves regular messages on the web site. He is trying to include Nicole in every aspect of the school day, without giving her preferential treatment, which is just what we want.

I really enjoyed my new role as a temporary Teaching Assistant, I feel a career change on the way! ;). I fitted in everything from helping with school dinners, to writing, P.E., number hunts around the school, and playground helper.

The children at the school are very observant, and ask lots of good questions about Nicole's condition, such as "can she walk?", "what is that tube in her nose?", "why hasn't she got any hair?", to the surprising "can she speak?!". It won't be very long before they find out the answer to that one! One day I took a photo in of Nicole just before she went into hospital, to show them what she used to look like, and what her hair will be like when it grows back.

The daily schedule is very hectic, especially for someone in Nicole's condition, but we tried our best to include her in everything. She even did P.E. in the playground, balancing beanbags, coits, and cones on parts of her body. She also did the Oakey Cokey in her wheelchair one day! We did, however stop short of putting her in shorts and t-shirt (maybe when it warms up a bit!).

They hold regular assemblies at the school, sometimes just years 1 & 2, and sometimes the whole school. They have a song that they are practising called "A Drop In The Ocean," which they are hoping to impress the Ofsted inspectors with this week. I can't get the song out of my head, and now know all of the words. I don't know if it was the sound of several hundred children singing, or the words of the song, which made me think of Nicole's small life as just a tiny part of a bigger picture. It certainly made the hairs on my neck stand up, and dare I say it brought a tear to my eye. It is so hard, when your childs life is taken completely out of your hands.

Nicole has also become a fan of Neil Diamond!, as they play his album, including "A Beautiful Noise," as they eat their lunch, and as they leave assembly. It is great to see that there is still a place in the school assembly for the good old wooden piano. I am glad to see that some things haven't changed!

The children have been very accepting of Nicole. On the first day, there were about a dozen girls, (and some boys!), queueing up to push her around the playground. The novelty is starting to wear off, but she still has a couple of friends come up to her at playtime. One day, a girl called Holly gave her a little white Ann Geddes bunny to look after. Nicole now has one of her own, and has given Holly hers back.

Another good effect school has had on Nicole is her eating. They have "Cafe Time" every morning, which is designed to promote healthy eating, and improve the childrens social skills. They are given a choice of fruit, and drinks. Nicole ate her first banana in weeks, and had 4 pieces. She did the same on Tuesday. On Wednesday, she burst into tears, and when I asked her what was wrong, she said that there was no banana! They have different fruit every day, to encourage choices. One of the teachers felt sorry for Nicole, and went to the shop on her way to school on Thursday, and bought a couple of bananas, just for her.

On Monday, we picked Nicole up at 12.00, but I showed her the hall where the children ate their lunches, so when she got home, she asked Mummy if she could take a packed lunch on Tuesday! She managed part of a marmite sandwich, and a packet of cheeselets. The power of peer pressure in action!

There is another lad in the class above Nicole called Ben, who is also in a wheelchair, and this has probably helped the childrens acceptance of Nicole. It is great to see Nicole and Ben together, you rarely see them without a smile on their faces, despite their problems.

On Thursday, we had to take Nicole to Exeter Mobility Centre to get her wheelchair fitted properly. She also went to hospital afterwards for a blood test, which showed her counts were very low, and we had to go back on Friday for a 4 hour blood transfusion. Her Neutrophils, which on a good day are 12 , were 0.00!, meaning her immune system has been completely wiped out. She is now very prone to catching an infection, and although her temperature hovered around 38c on Friday and Saturday nights, it had calmed down by the mornings, so we didn't have to go into hospital.

Lauren continues to be a nightmare with her sleeping, and has been up for several hours every night this week. She had her MMR jab on Friday, which probably didn't help matters, and we are hoping things will start to settle down soon. We can't cope with much more!!

The fundraising for the sponsored walk on 14th March is going very well, and is being well supported by friends, family, the School, Nicole's pre-school, and her former nursery at Cary Days. We are still in the process of opening a Bank Account, and will post details on the website when we have them.

Thank you to everyone for their kind messages and support. Thank you also to www.postpals.co.uk, who have kept Nicole busy with gifts, cards and letters almost daily. We have had responses from all over the world including Australia, Canada and America!

Friday, February 20, 2004

Wow, another week gone already. It has been a quick week, but also very hectic. Grandma came round on Saturday (Valentines Day), and Sara managed to get some ironing done, while I got out to do some much needed gardening. It was a nice sunny weekend, although a bit cold. Both the girls went off to sleep well in the evening, which enabled us to watch Calender Girls on DVD, and eat our chinese from Marks & Spencers in peace. Laurens timing was impecable, waking up as the credits rolled !

Sunday was our first day out for some time, when we took the girls for a walk along the seafront. Nicole took her pink wheelchair. After an icecream on the harbour, Grandad and Patricia joined us at the amusement arcades, and Nicole went on the tuppenny shovers, then Lauren and Nicole went on the rides including Noo Noo, The London Bus, and Big Foot. Lauren and I then went into "Goghs Portrait Photo Booth", and had our picture taken, followed by Mummy and Nicole. The pictures have taken pride of place on our mantelpiece.

On Monday, I took Nicole to Exeter for her Chemo. She had IVE, which takes 3 days. Nicole spent all of the time in bed, which probably wasn't a bad thing for her to get some rest, She dealt with the Chemo fairly well, although she was sick a couple of times. Ruth the Physio came and did some leg stretches in bed. She also had some casts made up to keep her legs and ankles at the correct angle when she is asleep. She is still on hunger strike!, but we are continuing with the NG feeds.

Thursday was Mummy's birthday, and we managed to get home mid afternoon, to spend some time with her. Grandma was already there with a birthday cake. I got Sara "Chicago" on DVD, and a gold locket from the girls. I was hoping to get a picture of the girls in it, but time ran out. I did well to nip out and get the locket whilst we were in Bristol !

Today, we went to the John Parkes Unit, to pick up Nicole's NHS wheelchair at last. It is not quite as funky as her pink one, but at least it isn't black. The frame is violet/purple, and the good thing is it folds up quite small, so should fit in the car better. With regret, we will probably take her pink chair back when we are next in Bristol. We are rapidly running out of storage space at home !

Friends are organising a sponsored walk around Cockington Village on the 14th March, to raise funds to send Nicole to Disneyworld when her treatment has ended. We are hoping she will be able to go to Florida, but will not be able to go until her treatment has completely finished, and the Doctor says it is safe for her to travel.

We are still planning to take Nicole to school for the 1st time proper on Monday, so check in next weekend, to see how she got on.

Friday, February 13, 2004

Good news!! We made it back to Torquay on Tuesday night. It is good to be back in our own home, if only for a few weeks. We are likely to have to go back to Bristol at the end of March for more tests and scans, to see if the tumour is responding to treatment. It is not worth scanning any earlier, as the tumour is likely to be inflamed by the Radiotherapy, before it starts to shrink. Nicole will be in Exeter next Monday, Tuesday and Wednesday, for her next round of Chemo.

Sara and Lauren did make it to Bristol, and Lauren was true to form, keeping us all awake at night! We took her to the Doctors again today, and she now has an ear infection in both ears, but the conjunctivitis has cleared up. She has started a different course of antibiotics.

Nicole had her new car seat arrive this week, which has a swivel base, to make it easier to get her in and out of the car. She found it comfortable on the trip home, but we now realise we may need a bigger car than the Renault Scenic, to fit in all of the wheelchairs, buggies, car seats, luggage etc!

Nicole’s eating hasn’t improved much, but she has found a taste for breadsticks, and finished off most of a packet today. She also had yoghurt for the first time in ages, and really enjoyed it. Our kitchen is starting to resemble Boots the Chemists, what with Nicole’s medicines, and now Lauren’s.

Nicole is currently on 12 medicines daily – Anti sickness twice a day, Antibiotics twice a day, Throat linctus 4 times a day, and Cough medicine 4 times a day. Great fun when your child hates taken anything orally! What with 3 feeds a day, catheterisation 4 times a day, and Lauren to keep amused, no wonder we don’t get much time for ourselves.

We are gradually getting ourselves back into the system in Torquay, and have seen the Physiotherapist and Doctor, with appointments booked later in the week with the CLIC Nurse and Occupational Therapist. We will also be in contact with Nicole’s school, and hope to get her started at school for a few half days after half term next week.

Many of our friends have asked about raising funds for Nicole, and we are taking advice on the best way to set this up with the Bank, and will advise details when we know more. We have also received many messages, cards and gifts from Postpals.co.uk, which always cheers Nicole up. Thank you to everyone for their support, it really makes a difference.

Thursday, February 5, 2004

Well we managed to get home to Torquay for the weekend to see Mummy & Lauren. Lauren is still very unsettled, and kept us all awake on Saturday night. Sara took her to the doctors on Monday, and she has got an ear infection, and conjunctivitis! Lauren also started to go to nursery last Wednesday for 1 day a week to give Sara a break. Because she is so unsettled, Nicole and I came back on Sunday night, to try and get a good nights sleep, ready for her Radiotherapy this week.

The feeds have been going well, and Nicole seems to be tolerating the nose tube better this time. It is just as well, as she has not eaten a single thing for 4 days. The Doctors think it is probably a combination of a chest infection, and a swelling of her gullet caused by the Radiotherapy, which makes it painful to swallow.

Nicole was 10 days post Chemo on Monday, and had a temperature of 38.5c in the morning. This often happens, as the chemo wipes out her immune system, so her body is unable to fight infection. Any temperature over 38c, and she has to be taken into hospital for checks and antibiotics. On this occasion, it turns out to be a chest infection and a wee infection, so she has to stay in hospital, until her temperature stays down for 48 hours.

Nicole has been in a pushchair since being paralysed, and this has affected her independence. However, a few weeks ago, we discovered that Sam’s House had a wheelchair that had been donated for families to use. It turned out to be bright pink, Nicole’s favourite colour! As we are still waiting for our NHS wheelchair, the manager of Sam’s House has agreed that we can keep it until Nicole grows out of it. She has become very adept at using it, after only a few weeks.

She has also got a hand-propelled trike on order, which is being supplied by a company called WRK in Cambridgeshire. Bradley’s Estate Agents have kindly agreed to pay for the trike, which should be delivered at the beginning of March. This is a very kind gesture, as they have not even met Nicole, but heard her story from friends of ours.

Sara and Lauren are hoping to come up to Bristol at the weekend, and will probably stay until Radiotherapy ends next Tuesday. We are then hoping to be transferred back to Exeter, to continue Nicole’s Chemo.

Weds 28th Jan 2004

Nicole is aged 4 ˝, and was diagnosed with a Spinal Fibro Sarcoma Tumour at the end of September 2003. She lives in Devon, England, UK, with her father Allan, mother Sara & Sister Lauren aged 1.

It is hard to believe it is 4 months since our lives were turned upside down. Sometimes it feels like a few weeks, other times it seems like a lifetime.

This first journal entry is likely to be quite long, but please take the time to read it, as it covers all of the key moments in Nicole’s treatment since diagnosis. Please also take the time to sign our guest book, as all of your messages will be read to Nicole, to keep her spirits up.

*****************************************************************

LATE MAY 2003 – One night while getting Nicole ready for bed, Sara noticed a small lump on her back. At first she thought it was her shoulder blade, but on closer inspection, it was in-between her shoulder blades, nearer her spine. Obviously concerned, Sara took Nicole to the doctors the next day, to get it looked at. The Doctor shared our concern, and immediately referred us to the Paediatric Consultant at the local hospital.

17th JUNE 2003 – 3 days after Nicole’s 4th birthday, we all went to see the Consultant at hospital, who felt that it was likely to be a fluid sac or fatty lump, but would carry out further tests to make sure. Still concerned, the lump became a daily worry for us, and every appointment seemed to take forever to come around. Nicole carried on life as normal, enjoying the bouncy castle, skipping rope and hula-hoop, she had been given for her birthday.

16th JULY 2003 – Attend the hospital again for an ultrasound scan of Nicole’s back. The results the next day are inconclusive, but do show that there are nerve endings in the lump, and further tests would need to be carried out. We would have to wait for an appointment for an MRI scan until there were enough people to justify it.

20th SEPTEMBER 2003 – Having finally got an appointment for Monday 22nd September, despite weeks of chasing, we had booked a weekend away at a Holiday Park in Brixham, which we enjoyed very much. Nicole spent the days playing in the park and swimming, and the evenings spinning around the dance floor. We also had friends visit us on the Sunday, who joined us for a swim.

*****************************************************************

Week commencing 22nd September 2003 will go down as a week that we hope no other parent will have to go through. It went like this: -

MONDAY 22nd SEPTEMBER 2003 – Nicole is in hospital for her MRI scan. Sara and I sit outside, glad that we are close to the answers we need, but frightened at the same time. The scan seems to take a long time, and the Radiographers keep coming in and out to get more pictures. I assure Sara that this is probably normal, and everything will be fine.

TUESDAY 23rd SEPTEMBER 2003 – I am on my lunch break at work, when my mobile phone rings. Sara is in floods of tears, but manages to tell me that the Consultant would like to see us both at home that afternoon. Having been told that the results may take a few days, our worst fears look like they are about to become true. The MRI slides are shown to us, and we are told that the huge mass surrounding her spine is almost certainly a tumour. We will need to go to the Bristol Royal Children’s Hospital immediately.

WEDNESDAY 24th SEPTEMBER 2003 – Arrive at the Hospital in Bristol, and we are shown into the Playroom, where Nicole enjoys playing with the garage, and going on the rocking horse. Nurses start to arrive, and take our details for their records. We are also introduced to Nicole’s Paediatric Oncology Consultant. She explains that tests including an X-ray, blood test, and bone marrow test would need to be carried out. They would also need to put in Nicole’s central line (for IV delivery of chemotherapy drugs), and take a biopsy of the tumour.

THURSDAY 25th SEPTEMBER 2003 – Nicole is taken to theatre, to have her central line put in, and to have her biopsy. We expect to see her back soon, and maybe wait a few days for the results of the biopsy, so that her treatment can start. However, we are extremely worried when the Surgeon, the Consultant and a couple of nurses call us into a small room for a “chat.” When opening Nicole’s back to do the biopsy, part of the tumour had fallen out, and had taken some of her spinal vertebrae with it. The tumour had liquidised the bone in her spine, as well as the surrounding muscle and tissue. She had haemorrhaged badly, and was very lucky to be alive. After another hours agonising wait while they patched her up, we were shown down to the Intensive Care Unit, where Nicole would spend the next few days. I have never seen so many tubes, monitors and machines. Her little 4-year-old body was dwarfed by these machines that were keeping her stable. Her condition was monitored regularly, including any response in her lower limbs, as her spinal cord had been exposed. It was difficult to say at this stage what would happen.

FRIDAY 26th SEPTEMBER 2003 – As there was still little response in Nicole’s legs and feet, she would need to have another MRI scan to assess the damage. The Spinal surgeon from Frenchay Hospital showed us the resulting slides, which showed a large blood clot where the tumour had been, which was pressing on Nicole’s spinal cord. She would have to undergo further surgery to drain the clot, and her spine would need to be pinned with 2 x 4 inch Titanium rods, screwed in with 8 screws. We were taken by ambulance to Frenchay Hospital, and the surgeon explained the surgery to us. We would need to sign a consent form agreeing to the surgery, and the possible outcomes. The first 2 were death and paralysis. I cannot remember what the others were, as these 2 were enough to send the mind racing. The next 4 hours were the longest of my life. Sara and I both sat there in silence, both knowing what each other were thinking, but unable to speak. (We didn’t expect Nicole to make it through the surgery). Every time the door banged, we expected to see the surgeon come round the corner with a grim look on his face. However Nicole showed her fighting spirit (not for the first or last time!), and eventually we were taken down to recovery, where we met up with our heavily sedated daughter, and returned to the Children’s Hospital by ambulance.

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Nicole spent the next few days in Intensive Care, and was taken back to the Ward after the weekend. About half of the tumour still remained on the inside of her spinal column, and she would have to start chemotherapy treatment on the Wednesday. We were told that she had a Fibro Sarcoma tumour. It had not yet spread to any other organs, and was not in her bone marrow.

A Fibro Sarcoma is a very rare and aggressive tumour, usually found in adults, with 80f cases found in the knee. It is almost unheard of in infants, so what was our 4-year-old daughter doing with one in her back!! I guess we will never know. By this stage, we were in need of some good news, but we are still waiting!

Each Childs bed has a parent’s bed by the side, so that one of us can stay with Nicole during the night.

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1st OCTOBER 2003 - Nicole started chemotherapy. These are very toxic drugs injected into her central line. The nurse’s call the line a “wiggly,” as it is a white tube inserted into a vein on Nicole’s chest, which goes directly into her heart, so that the drugs start acting straight away. “Wiggly” sounds friendlier than a central line, and becomes the child’s best friend, as it avoids the need for endless injections. Blood samples can also be taken from the line. Nicole has two ends to her line, which she calls “Bill & Ben!” The nurses let her chose which one she wants to use each time. The line will stay in until all of Nicole’s treatment is finished. The drugs attack the fast dividing cells in the body, including the cancer cells, to try and disrupt their growth. However this does cause some side effects, which are listed below.

Her initial treatment was for 7 weeks, and consisted of: -

Ifosfomide, Vinchristine & Actinomycin (IVA) for the 1st, 4th & 7th weeks, with Vinchristine given on it’s own in weeks 2,3,5 & 6. Some of the drugs are given as “pushes,” which involves a single syringe injected into “wiggly,” and others are given intravenously (IV) over many hours.

Side effects of chemo are hair loss, which happened after 3-4 weeks, mouth sores, constipation, diarrhoea, nausea and vomiting, so regular mouth care is needed, as well as anti sickness drugs.

Nicole’s other problem is obviously her mobility. The pressure on her spinal cord has caused paralysis from the waist down. We have been told that this is unlikely to return, and she will need to have a wheelchair. She also has no control over her bladder and bowel, so needs to wear nappies, and be catheterised every 5 hours. There is a high risk of bladder infection from doing this, so she takes Trimethoprin every night.

In between medication, Nicole fits in physiotherapy, and has worked hard on her sitting balance, throwing, rolling and crawling. She also needs regular stretches on her legs to keep her muscle tone. At first she was very afraid of moving anywhere, especially given the height of her hospital bed, but her confidence is growing, and hopefully one day she will be able to transfer herself from bed to wheelchair to floor etc.

The first couple of weeks where very difficult for us, and our thanks go to both sets of parents who were very supportive, and especially to my sister Andrea, who took time off work to look after Lauren, as we were unable to cope with anything other than Nicole’s care.

We spent a couple of nights at the hospital, and were then given a room at CLIC house, a home from home with 10 bedrooms near to the hospital, funded by the charity Cancer & Leukaemia in Children.

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29th OCTOBER 2003 – Nicole is transferred to Royal Devon and Exeter Hospital (R D & E), which is much closer to home, and enables one of us to stay at home with Lauren. It also enables Nicole to spend some time at home between treatments, and we are delighted when she is allowed home for the weekend of Lauren’s birthday on the 8th November.

24th NOVEMBER 2003 – We all travel back to Bristol for Nicole to have another MRI scan, to see what effect the chemo is having. The following day, she has the scan, which involves lying still for 20-30 minutes, while the pictures are taken. Nicole once again obliges by lying as still as possible, despite the machine sounding like a pneumatic drill! The fact that she can lie still, removes the need for her to have general anaesthetic.

26th NOVEMBER 2003 – Whilst in Bristol, we see the spinal surgeon at Frenchay Hospital. He takes an x-ray, and is pleased with the rods that are holding Nicole’s spine together. He advises us that it is not a long term solution, as the metal and bone do not go well together, so they are likely to break down within a couple of years. It is also likely to confine her growth, and may cause curvature of the spine. However, he is not keen to do any further surgery until Nicole’s long-term prospects are certain. This could involve replacing the rods in the future, or taking them out altogether if her muscle and bone start to grow back. He again re-emphasised that he felt Nicole’s mobility was unlikely to return. We then return to RD & E Hospital for Nicole to continue chemo.

02nd DECEMBER 2003 - We receive a phone call out of the blue to ask if we had received our list of appointments for Nicole’s Radiotherapy to start on New Years Eve. Although we were expecting it at some stage, we had not officially been told when, so this came as a bit of a surprise, especially as we were looking forward to Nicole starting school on the 6th January. She would need to have treatment at Bristol every day (Monday to Friday) for 6 weeks, with chemo at the weekends.

04th DECEMBER 2003 – Our Consultant from Bristol visits us at R D & E Hospital with the results of the MRI scan. This will be the first opportunity for us to know if the chemo is having the desired effect. Our feelings are mixed when we are told that the tumour had not grown or spread, although it was difficult to get an accurate picture, as her spinal rods distorted the magnetic fields that are used in the MRI scan. However there had been some reduction in the depth of the tumour, but the width and height where the same. Because the reduction was not more than 50Nicole would need to go on to a stronger mix of chemo drugs for the next 5 months. Her new drugs would be Carboplatin, Epirubucin and Vinchristine (CEV) and Ifosfomide, Vinchristine and Etoposide (IVE). CEV and IVE would be alternated every 3rd weekend, in between the Radiotherapy.

15th DECEMBER 2003 – Go to Bristol for the day, to get Nicole set up for her Radiotherapy treatment. She needs to lie on her tummy, as still as possible, so that the treatment can be given through her back. They have to mark her back with ink tattoos, so that the dose is given in the correct place every day. At first it is very distressing for Nicole, as she is frightened of falling off the trolley, because of the lack of feeling in her legs, and the absence of any side bars on the trolley. This first alignment takes almost an hour, but now she has it down to a fine art, realising that the quicker she gets into position and calms down, the quicker she will be out of there! The treatment only takes 2-3 minutes, and we can now get in and out in less than 10 minutes.

16th DECEMBER 2003 – Having attended a book reading at her new school last week, Nicole is invited to spend the afternoon at Shiphay School to meet her new teacher, and see what is in store for her when she is able to start sometime in 2004. We dress her in her school uniform, a blue pleated skirt, blue polo shirt and red sweatshirt. It is quite an emotional day, and not the 1st day at school that we had expected. Sara & I stay with her, and the class carries out various play activities, and Nicole joins in enthusiastically. She is also surprised when her male teacher turns up from the staff Christmas party, with a star shaped bauble earring!

17th DECEMBER 2003 – Nicole is admitted to RD & E Hospital with a temperature of 38.5c. Infections are a common side effect of chemo, as the drugs wipe out her immune system, usually around 10 days after treatment. We are glad it is not Christmas week, and are hopeful that she will be able to come out before Christmas Day. Various antibiotics are tried, but have little effect, and her temperature stays high.

CHRISTMAS EVE 2003 - Nicole is discharged from hospital, but will need to go in for antibiotics on Christmas Day & Boxing Day.

CHRISTMAS DAY 2003 – We are delighted that Nicole is at home on Christmas morning to open her presents, with her sister Lauren. Not surprisingly, after what she has gone through, she receives way too many presents, and we would like to thank everyone for their kind gifts, not only at Christmas, but also during her long stays in hospital. Her favourite presents include a Care Bear, Junior Monopoly, and a Leap Pad. Unfortunately, we didn’t even have time to clear up the discarded paper before I had to take her to hospital for her antibiotics. We consider ourselves fortunate, when we see how many children spent their Christmas Day in hospital. To save rushing, we keep some presents until the afternoon, and Grandma’s presents until we visit her on Boxing Day.

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30th DECEMBER 2003 – Travel back to Bristol to check alignment for Radiotherapy, and move into Sam’s house, another CLIC funded property with 17 bedrooms. The house is normally used for Leukaemia and Bone Marrow Transplant families, but has better disabled access than CLIC house.

NEW YEARS EVE 2003 – Nicole has her first Radiotherapy treatment. Side effects of treatment are extreme tiredness, burning of the skin, and the growth around the treatment area can be suppressed. Damage to the spinal cord could also be a concern for a spinal tumour, but Nicole’s damage appears to have already been done. The dose of Radiotherapy is calculated by a specialist, and is designed to do maximum damage to the cells of the tumour, without affecting surrounding tissue or bone. It is effectively a very strong X-ray, given at a much higher dose than a normal X-ray. Sara and I spend our evening having an Indian takeaway, with Lauren refusing to go to bed. A week later, we decide that Nicole will need her rest, so Sara and Lauren stay at home, as Lauren is teething, and not sleeping well, whilst Nicole and I stay in Bristol.

06th JANUARY 2003 – The day Nicole was due to start school. The hospital has a very good schoolroom, and she either attends the school, or teachers come onto the ward and work with her. Tuition is normally one on one, several times a week for an hour or so. She will notice a difference when she gets to proper school, and has to share her teacher with 33 other children! Bristol and Exeter Hospitals also have Playrooms, and Hospital Play Specialists, who entertain the children during the day with games, colouring and other activities. Each bed also has a TV / Video for the children to use, and the playroom is well stocked with videos.

26th JANUARY 2004 – Anyone who knows Nicole will be aware that she is not the best eater in the world. The chemo can also affect the appetite, and she has been losing weight since she came into Hospital. She was 15.5kg when she was admitted, and has now fallen below 14kg. She needs to be strong to deal with her treatment, and fight the Cancer, so today she had a nasogastric tube put back in. This consists of a feeding tube inserted up the nose and into the stomach. Feed is then given with a pump, often overnight to supplement her intake. Nicole had a tube in the first month or so of treatment, and didn’t get on with it too well, as it made her urge and vomit, so she was not in the best of moods when they tried to put it back in again!

That brings us up to date for now. Despite everything, Nicole is dealing with things incredibly well, and on a good day, brings a smile to everyone’s face. Understandably, she also has her bad days, but who can blame her!

If you are reading this, you have either read all the way through, or have skipped to the end! Whichever, thank you for taking a look at Nicole’s website. Please don’t forget to sign the guest book, and come back soon. I will try to update the site at least once a week, and promise that future journal entries will not be as long!!

Take care Allan, Sara, Nicole & Lauren xxx

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