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Wednesday, May 5, 2010 7:18 AM CDT

Well its been a long time since ive updated, Facebook seems to have taken over everything. Megan is now a grumpy 7 year old and in year 2 at school. She had more spinal surgery in February to lengthen the rods. She copes very well with surgery and is normally up and back to normal in no time at all.

We managed to get Megan out of nappies and into knickers and Tena lady pads about 5 months ago. Things were been going great and she was very pleased to have got shot of nappies. Since her recent surgery she has had a few hiccups and it maybe that the surgery has damaged her bladder. We spoke to the urodynamics nurse and shes going to get some pressure tests done on her bladder so we know whats going on. We also saw a new team of doctors about the spascticity in her legs. She is on Baclofen to help with this but the spasms seem to be worse. She hasnt had Botox for over a year now and we have really noticed the differance. They feel she would benefit from more Botox into 3 differant muscles in her legs. Shes been put onto the waiting list which is 4-6 months, hopefully we will get a cancellation as we feel she cant wait that long.

Well things have been really the past few months. Megans elder sister Jenny got married the beginning of April. Megan was bridesmaid and Joe a pageboy so both upstaged the bride lol. It was a lovely day although a bit hit and miss with the weather. We now have the excitement of a new arrival as Jenny is expecting a baby the beginning of November. Were all looking forward to it, Megan would like it to be a girl and Joe would like a boy so he can play football lol.

Things are going well at school. Megans school still dont have adaptations but i have been fighting. After nearly 3 years of being there we have finally been told that the school will be adapted. They are having 3 new classrooms, a lift. new hygiene room along with other things. The building will start July 24th and completion date should be April 2011.

Were all looking forward to seeing my uncle and aunt who live in Australia in June. Hes coming over for a holiday with his wife, also my uncle and aunt from Germany. My mum will be going to Somerset for a week with them where they are all staying in a cottage together. It will be the first time in about 40 years (i think) they have all been together. We are going to stay overnight in a B+B so we can see them. Joe and Megan have never met there Australian family so would be lovely for them to meet. I think its been about 20 years or so since i last saw them.

I will try and about every month now ive sussed out how to log in to Caringbridges new site layout.


Megan in hospital


Me and Megan


Joe and Megan


Megan as bridesmaid at Jens wedding


Wedding party

Sunday, May 2, 2010 3:38 AM CDT

Sorry for delay, its taken me this long to suss out how to add a journal now caringbridge have changed everything.

Megan is doing ok, i will update this week as it will be lengthy, and ill add more photos x

Saturday, July 25, 2009 1:35 PM CDT

Once again i have left it so long to update, i apologise and will try to update more often.

Megan is doing ok, she has recently had more spinal surgery and is recovering well. We were in hospital for less than 24 hours, kids seem to bounce back so quickly. The surgeon has said we may be able to get away with having surgery in 9 months rather than 6. This will be alot easier and less stressful for us all. Megan is at full time school and she misses out on alot when she has surgery. Although she is only in hospital for 24 hours she has to has 2 weeks off school. Everything else on the health front seems to be going well. We saw the oncologist in June and have now been signed over to long term follow up. We will only be seen anually now to discuss long term problems/effects of her treatment for Neuroblastoma. Forgot to mention Megan lost her 1st tooth whilst in Great Ormond Street having surgery. The surgeon had to take it out as it was so wobbly. She was impressed as the tooth fairy paid £5.00.

Megan will be going into year 2 in September, i cant believe this will be her 3rd school year. She has loads of friends and is doing very well. The school still isnt adapted fully but i will keep fighting until we get everything she needs. We now have 6 weeks over summer of no school and trying to keep Joe and Megan occupied.

We have just returned from a week in New Milton, Hampshire dancing with Sammy seahorse. We go every year with The Thomas Ball childrens cancer charity. We cant thank Elaine enough for her generosity in letting us go there. Joe and Megan really enjoyed themselves although the weather wasnt very good. We took my mum with us this year and she enjoyed seeing the kids do all the party dances. So now its back to reality and about 10 loads of washing.

Joe will be celebrating his 9th birthday next month. The years have gone so quickly. He has decided he wants a psp console, whatever happened to proper toys lol.

Thankyou to everyone that continues to visit Megans site, i show her all the messages that have been left for her.

Wednesday, March 11, 2009 7:55 AM CDT

Well Megan is turning 6 on the 12th July. Every year were so thankful our princess is still with us. Shes been off chemo for 5 years now and is doing so well. We continue to have lots of hospital appts but everyone is very pleased with her. She had more spinal surgery in January and is recovering very well. Shes now in year 1 at school and loving it, not sure how September will be as the teacher is very strict.

Well as Megan is nearly 6 she decided it was about time she had her hair cut for the first time. I always said id never cut it as she lost it through chemo. Anyway she was just about sitting on it and she gets very hot so we just did it. She loves her new hair do and looks very grown up. A day will come when i have to let her grow up but shes still my princess and always will be.


Megans first haircut since finishing chemo 5 years ago

I will update more soon, im always thinking of all the kids fighting this awful disease. Never give up, we were told 3 times Megan would not make the night and 5 years on were celebrating her 6th birthday.

Wednesday, December 17, 2008 7:47 AM CST

I cant believe that in a week it is christmas eve, this year has gone so quickly. Since the last update we have been fairly lucky and only had routine appointments with Megan. Were still waiting for the date to come through for our admission to Stanmore. Megan will be due another spinal operation in January, im still waiting for a date as the nurse hasnt phoned me yet. We had to cancel Megans eye appt last week as she wasnt well so this will be rescheduled for february.

Last Saturday we took Joe and Megan to Harrods in London as we heard a rumour that Santa would be there in his grotto. Joe and Megan had a lovely day, i was not feeling well so have to apologise to everyone that i was such a miserable cow. Mrs Clause has officially made Megan a princess for life and we were also very luck to see Cinderella and Prince charming. We were also lucky to see Ronan Keating from Boyzone in the grotto with his family. I was a bit star struck, but hey hes much better in the flesh.



Unfortunately Megan has been quite poorly the past few weeks, shes had a terrible cough and cold. Monday she started being sick and running a temperature. I took her to the doctors and she has this awful viral fluey type thing. The doctors have prescribed antibiotics so hopefully shell be better soon.

Anyway ill update after christmas, and want to wish you all a very happy christmas and new year.

Monday, November 3, 2008 2:16 PM CST

We have had such a busy busy time lately. Megan has recovered really well following her surgery in July. The stitch has dissolved now and her back looks great. We recently had an appointment at Stanmore ortheopedic hospital. Everything went ok and we have been given some new excercises to try. They are a bit concerned about her pelvis as she isnt sitting very well. Her pelvis seems to sit very awkwardly with her trunk. they doctors and physios feel that the muscles on one side of her trunk are not contracting properly causing this problem. We are going to be admitted for a week to try some electrode type therapy, this should make the muscles start contracting and possibly we can correct her sitting position some more. We may also try a type of spinal jacket that she can wear that isnt solid plastic and she may be able to tollerate it better.

Last week was half term and Megan had a wheelchair skills course that was run through Wizz kids. We had to go to the Britt school in Croydon everyday and the course was run by Emily and Mark. Emily and Mark are both active wheelchair users. Megan proved to be a little star, her skills are great. She has learned all about road safety, spatial awareness and how to use her wheelchair properly. Emily feels that Megan is very advanced in her skills and we are now practicing her back wheel balancing. Hopefully this course will be repeated every year which will be great not just for Megan but me aswell. Its been great meeting other people in similar situations, and also great for Megan to interact with other children in wheelchairs. Because Megan is in main stream school its very rare that she ever comes across another wheelchair user.

We had a really busy weekend at my mums. Friday was halloween of course and Joe and Megan wanted to go trick or treating. It was freezing cold but we braved the wind and took them out for an hour. Joe was frankenstein and Megan was a witch. they both did very well and have a huge bag of sweets each. Joe and Megans sister Jenny came down with her boyfriend Andy for half an hour, Andy was dracula and Jenny was a big blow up ghost. You wouldnt think they were in there mid twenties.


Joe and Megan


Joe, Megan, Jenny and Andy

Well were all getting ready for christmas now, i know its about 9 weeks away but it will be here before we know it. Megan wants a keyboard and Joe an electric guitar. Our house will be noisey xmas day if Santa obliges lol.

Wednesday, September 10, 2008 12.10 GMT

What a busy busy summer. So glad that things can now get back to normal. At the beginning of the summer holidays we were lucky enough to spend a week in New Milton at the Thomas Ball lodge. The weather was very kind to us and we had a great time. Joe and Megan were so pleased to be able to dance with Sammy seahorse again, and it was great to see Hayley, Steve and Emma (in house entertainers). We spent a few days on the beach, went to Bournemouth, visited adventure wonderland. Adventure wonderland was great, the people who stayed in the lodge the week before us won a family ticket but didnt have time to go so left it for us. There were lots of rides that Megan was able to go on so she felt very included. We all went on the tea cups and i cant begin to tell you how fast they were lol. We spent the whole day there but it was so hot. We came back from New Milton on the Friday night so we could miss the traffic and we wouldnt have to listen to Joe and Megan saying "are we there yet". They both slept the whole way home so it was a nice quiet drive.

We were very fortunate enough to be invited to the post pals party in July. Kat and Viks do a great job with postpals and it was lovely to meet them and catch up with some lovely people that send Joe and Megan post from all around the world. The weather held out and we had a lovely day. At the end of the day Kat and Viks cut a cake and balloons were released in memory of all the postpals children that have earned there angel wings.

Megan went into Great Ormond Street at the end of July for her spinal rods to be lengthened. Surgery went well and we were home within 24 hours. Unfortunately i was less than impressed at the treatment we recieved. There is such a lack of communication between members of staff. Megan woke in recovery in a terrible state, it was discovered that the doctors forgot to put a catheter in. She woke in a pool of wee and we had to pull her about to strip the sheets and make her comfortable. This was all completely unecesary and not fair to Megan. I got very upset and made it known i was not happy. We were then sent home with no follow up appt just basically told to get on with it. The doctors attitude seems to be you know what youre doing see you in 6 months. Well Megan has recovered well but the stitch at the top of her back still hasnt dissolved. We saw the local consultant who snipped the end but i need to keep an eye on it. It seems to be looped in a hole under the skin, so need to check it doesnt get inflamed. If it does we will need antibiotics.

Joe celebrated his 8th birthday on 31st August. We were at my cousins little boys christening but he had a good day. Hes very into star wars lego so was easy for presents this year. He also lost one of his teeth at the front and went round collecting Money from everyone ( how embarassing)

Joe and Megan have been back at school a week now and are really enjoying it. They both have new teachers and seem to like them. As Joe is now in year 4 the work is getting a lot harder and he seems to have a lot more homework to his disgust. The school have now got the hygiene room sorted at the school for Megan, so things are looking good.

Saturday, August 30, 2008 4:21 PM CDT

Weve had a hectic few months with surgery, holidays etc etc. I will post an update next week. Just wanted to say Happy birthday to my boy Joe. Joe will be 8 tomorrow (31st August).



We wont be doing a huge party or anything as my cousins little boy is being christened tomorrow. Wednesday Joe and Megan are back to school, cant wait lol.

Monday, June 9, 2008 3:06 PM CDT

Well what a busy few months. Weve been busy, busy, busy. Megan is doing great at school. Her reading has come on in the past few months and her spellings are great. Her teacher at school is lovely and does all she can to make Megan feel included in the class. She has loads of friends and they all fight to be her partner. She has a school trip next week to a farm. The school have had trouble getting transport with wheelchair access so i will be driving her there. Obviously not the ideal option but its that or she misses out. Also the class are strating swimming lessons so that brings a heap of other problems. Once again transport is an issue so i will be taking her and bringing back to school. Also Jackie her support worker is unable to go in the water with her as she doesnt have the right certificate.

Megan has just had her MRI scans done at GOSH for her tumour and we got the results back last Thursday. Her scans have all come back clear and the tumour hasnt changed shape and is still non active. The oncologist is very pleased with her progress over the years. Normally Megan would move onto long term follow up with a differant consultant. However the oncologist doesnt feel ready to let Megan go yet, she has a soft spot for her. So she will see Megan in a years time, just before the next appt Megan will have an echo done of her heart and some Kidney scans. All these tests will determine if the chemo has done any damage. She had scans when she finished chemo and everything was fine so they dont forsee any new problems. So healthwise were doing good. We are scheduled for more spinal surgery on 25th July. Thankfully ive managed to organise this so its in the summer holidays as she misses so much school due to so many appointments.

Now i want to tell you about a new piece of equipment that Megan has been bought by a charity. GEORGIES FUND approached me asking if there was anything that would help Megan that wasnt available on the NHS. After speaking to Megans physio it was suggested that a wheelabout would be great for Megan. It is a sort of standing frame that Megan is strapped into in a standing position and then there are big wheels so she can still self propell. Well long story cut short, Megan recieved the standing frame last week. She was a bit scared to begin with but has taken too it like a duck to water. I can never thank all the girls at Georgies fund for this wonderful gift, it will hopefully make her a lot more independant and also improve her muscle tone etc in her legs. Please stop by Georgies fund and read up on George Hayhoe and his battle with Neuroblastoma. Unfortunately George lost his battle and his mum set up the charity in his memory, what a wonderful lady.

Megan in the rabbit ( wheelabout)



Were off on holiday to New Milton July 12th, Megan will be able to have some fun times before she has to go in for surgery again.

Please take a look at the following and grab a duck for postpals









Post Pals
PO Box 278 ,
Leatherhead,
Surrey ,
KT23 4WN Vikki George

Post Pals www.postpals.co.uk is involved in the "Great British Duck Race", on the 31st of August 2008 250,000 rubber ducks will be released into the River Thames to raise funds for good causes. The first duck over the finish line will win £10,000 and there are lots of other prizes up for grabs! Ducks only cost £2 to sponsor with a little donation added on, for every £26 donated to us we will be able to send 100 postcards to seriously ill children and their siblings. Last year we raised just over £100 and would love to double it as we are trying to raise £1000. We are currently a non profit organisation but would like to become a charity, to register we need to of had an income of £5000 in the past year but we still have £1000 to go, registering would mean we could fundraise in the future easier as well as other benefits.

To sponsor a duck please visit
http://www.thegreatbritishduckrace.co.uk/charitypage.php?charity=368 and select "Post Pals" from the drop down menu, please help spread the word by re posting this, putting on blogs, emailing etc. To code for a banner to show up on a blog etc, the code to copy is

If you work for a company they can register as a partner and be a big part of the fundraiser with all staff donations going to Post Pals



The closing time is early on the 31st of August,

Thank you!





http://www.postpals.co.uk – Posting Smile’s on Sick Kids Faces


















Well i will try and update sooner next time.

Monday, April 7, 2008 21.27 GMT

This picture is of Megan on the chase childrens hospice website. Christophers (as its called) were a great support to us when Megan was on treatment.CHASE CHILDRENS HOSPICE

Firstly i want to say thankyou to everyone that sent Megan birthday wishes. I cant believe Megan is now 5, who would have believed 4 1/2 years ago we would be celebrating her 5th birthday. She had a fairly quiet day as she was at school. We got up in the morning and she had the presents that we had got her. Nintendo ds games is flavour of the month. We bought her a ds for xmas and shes never off it. It will be great when she is having surgery to keep her occupied. Anyway we bought her some games, clothes, games and a few other bits. She had a big pile of presents from POSTPALS. Also a lovely parcel full of goodies came from GEORGIES FUND so thankyou Tania and all the girls, she loved them. Megan then went off to school to see her little friends. We had a small party for Megan on the Sunday after her birthday at home. It was really a chance for my friends/family that have tiny babies to come and see her and Joe. She had a lovely fairy castle cake and once again got spoilt. She has a complete wardrobe now for the summer and got some money for more ds games. My oldest friend Lucy came over with her partner and 10 week old twin girls Ava and Alfrayer. Megan loves babies which was a good thing as my cousin had her 6 week old baby boy Joshua and Megans carer Kim came along with her 2 week old boy Harvey. As you can imagine lots of noise in our house that day.

Megans birthday cake


Megan opening some of her pressies

In March Micks nephew got married to his fiancee Danielle. It was a lovely day which wasnt spoilt by the awful british weather. It was windy and rainy but we all had a great day. Sam is in the army so we dont get to see him much. Was great to catch up with family that we havnt seen for so long. Joe insisted on wearing a suit and tie, i must say he looked very smart. After the service we went to the hall for a good knees up. Megan was having a great time when suddenly her wheel fell off the wheelchair. I cant understand how it happened, needless to say she was terrified and needed lots of cuddles to make things better. ~It was a late night and Megan fell asleep on the bench. Joe seems to have bags of energy and would of gone on all night if allowed.


Joe with cousin Sam, the groom

Both Joe and Megan had a great easter and once again the easter bunny was very generous. I think they ended up with about 12 eggs each, not so great for mum when shes going to weight watchers. They still have about 4 left each which there slowly ploughing through. The school organised an easter egg hunt and also some animals came to the school. Joe had a huge snake around his neck, much braver than i am, lol. Megan held a mouse and stroked several rabbits, shes not as brave as Joe. Both Joe and Megans school reports were excellent. They are both doing well and there teachers very pleased with there progress.

Megan is doing well health wise. We are back to Great ~Ormond Street in May for an MRI and to see the oncologist. She will be having more spinal surgery on July 25th. Already i can notice how much shes grown since the rods were replaced in December. She is beginning to get a curve again. We have an appt coming up at Stanmore Royal National Ortheopedic hospital. They deal with spinal injuries and we are seen there every 6 months. Last time we were there we met a little girl called Daisy who was also in a wheelchair. We got chatting to her dad Andy and found out that she also had Neuroblastoma. She is slightly older than Megan but it was lovely to see them having wheelchair races and playing hide and seek. Megan has never come across another child with her problems so it was nice for both of them to meet.

Well true to form the great british weather has been very unpredictable. We woke up Sunday morning and it was snowing heavily and had settled. I never thought id see the day that kids were playing snowballs and building snowmen in April. Last week it was quite hot and sunny and then snow, how strange. Joe went out to play but Megan stayed with my mum and sister Saturday night so couldnt join him. Of course all the snow has now melted and we have had some sunshine, bizzare.

Snow in April

Not much else to report on the Megan front really. Things are still busy busy and we still have loads of appointments but shes generally doing well.

Ive been very shocked and saddened to hear about a little girl here in the UK that relapsed with Neuroblastoma a while ago. Doctors have now told Samanthas family there are no more treatment options for her. The plan is to control the pain in the time she has left. Samantha has always smiled through the cancer but in the last week she has become very poorly and sleeps alot of the time. Samantha has only just turned 5 and lives with her mum, dad and brother Louis. Please stop by her site and leave a message of support in her guestbook.

SAMANTHA HUGHES

Tuesday, March 11, 2008 3:04 PM CDT

As usuall time flies. I will do an update next week, for now i will just leave you with a few pics of Megan.

Megan will be celebrating her 5th birthday tomorrow. Shes defied the odds and is still with us 4 1/2 years after diagnosis.




Me and Megan

Sunday, January 20, 2008 5:43 AM CST

I have no excuses i just havnt had time to do an update so i apologise.

Megan spinal operation went ok, as you remember from the previous update her rods had snapped. The spinal team put in some new rods that are heavier and thicker. Hopefully these will withstand alot more pressure and wont snap again. Megan is recovering well although she had an infection in her wound just over a week ago. She took 2 differant antibiotics and now seems to be healed well. Shes back at school and seems to be doing well. We see the spinal team for a follow up appt on Friday 25th. I need to check with them what sort of physio she is now able to do. She wears her callipers and uses a k-walker to jump. The physio is concerned this is putting too much pressure on her spine and the rods.

Joe and Megan had a great christmas and were spoiled AGAIN. Megan got a nintendo ds and a few games, Joe mainly got Dr who stuff. He is still an avid fan. They were thoroughly spoilt by POSTPALS and were sent some lovely gifts from there xmas elves. We spent christmas at my mums and then on boxing day we went to my friends house. We saw the new year in at Micks sisters house, although i was driving so we left a little after 12.30.

Anyway i have to dash as Megan has her friends 5th birthday party this afternoon. I have added a few new photos of christmas at the bottom.

Please pop by and visit Samantha. Samantha has just relapsed with Neuroblastoma. She has just had an MIBG scan to determine how far the disease has spread. Im sure they could do with youre support.
www.samanthahughes.co.uk


Joe with some posty from Postpals


Dr who mad


Megan with her new parasol and cinderella slipper game from her xmas elf


Megan loves her parasol


Megan wearing a lovely scarf sent to her from postpals

Tuesday, November 27, 2007 2:07 PM CST

Saturday 8th December 2007 UPDATE


Just a quick update to let you know were home. Megans surgery is all done and she travelled home by Ambulance looking at the night sky out the window. We go back for post op appt in 5-6 weeks. I will do an update during the week with some photos.




http://www.elfyourself.com/?id=9633804886

Use the link above and have a laugh

Monday, October 8, 2007 4:20 AM CDT

Well the last few weeks have been busy, busy, busy. Megan is enjoying her time at her new school. The last 2 weeks she has just been doing mornings and then staying for lunch. This week is her first week at full time school. She has a full time carer Miss Nash, her and Megan seem to have really hit it off and Megan trust her completely. Unforunately Miss Nash hasnt been trained in manual handling or doing catheters as yet. This makes things difficult for us as were constantly at the school doing these things. Im sure things will sort themselves out soon its just tough for now. Megan is very unhappy about us keep coming to the school, she wants to know why Miss Nash cant do the catheters yet. Weve explained she will be soon and i think Megan understands this. Were starting catheter training this Wednesday and the manual handling advisor is coming to the school on November 2nd for training. So things are coming together slowly and Megan is very happy. I know ive made the right decision fighting for this school although i heard that someone has been saying Megan should be in a special needs school, if i ever find out who they will get the back end of my tongue.

We havnt had too many hospital appointments lately. We saw the urodynamics team at GOSH and are trying a new system for pooing. Enemas have little effect on Megan as she was continuing to have accidents at school. We are trying a new system provided by GOSH. Basically its the same as colonic irrigation. We have to use loads of tubes and pump in 250mls of water into her bladder. So far weve had a few accidents but were going to keep on with it. We had an appointment at Stanmore royal national ortheopedic hospital last Friday. We go there every 6 months for a peadiatric review day. We havnt been there for 18 months because Meagn was ill at previous appointments. They are very please with her and have given us some more excercises to try on Megans legs. She had a hip xray just to check for no abnormality. We met a few other families there with there children and had some lenghty chats. Daisy was 6 and in a chair like Megan. We didnt realise until talking to her dad Andy but she also had Neuroblastoma when she was 9 months old. Her tumour was higher up than Megans and has left her with mobility and bladder/bowell problems the same as Megan. Weve never come across another child with the same problems and it was so nice to meet them and realise were not alone. It was lovely to see Megan and Daisy having races and playing hide and seek in there chairs. They really enjoyed each others company. There was another little boy called Rohan who was 15 months old. His mum Shapna was also telling me that Rohan had Neuroblastoma when he was 1 month old. His tumour was also involved with the spine and he will face the same problems as Megan when he gets older. He will need a wheelchair and probably help with bowell/bladder. Its great for Shapna to see Megan and Daisy looking so happy and managing life while in a wheelchair. Its a tough battle having a child with cancer but then to be told youre child has a disability because of the tumour is hard to deal with. We all wander why???? Anyway we have all decided to keep in touch as it would be great to chat with someone who understands what youre dealing with.

Well our next appointment is with Megans oncologist on November 1st so will update then.

Please keep Williams family in youre thoughts. William lost his battle with ALL on September 13th. He was only 8 months old and fought this awful disease since he was about 8 weeks old. He had a big sister Laura who is 4, and mum and dad Kaye and William.
www.caringbridge.org/visit/williamhaite

Monday, September 17, 2007 11:53 AM CDT

Just a quick update. Megan started her first day school this morning. She had a great time and is so excited to be going back tomorrow. Today is a day we never thought we would ever see, its a week short of 4 years since she was diagnosed.


Megan excited about her first day at school


Joe and Megan ready for school

I will update in a few days, loads to tell you all.

Please keep WILLIAMSfamily in youre thoughts. William was 8 1/2 months old and has just lost his battle with ALL. He earned is angel wings 13/9/07 at 6.53pm

Monday, August 20, 2007 1:56 PM CDT

Wow, i cant believe the time has flown by AGAIN. We had a fantastic time in New Milton at the Thomas Ball charity lodge. We arrived on Saturday 14th July, the sky was black and we thought we were in for dreadful weather. We were actually very lucky and had fairly good weather all week. We went to the clubhouse on Saturday night ready for Sammy Seahorse. It was the same entertainers as the previous year and they remembered us. Once again they were great with Megan and included her in all the games and party dances. We went to Mudeford to try and go crabbing. The sun was shining but it was so windy. Anyway we spent about 3 hours crabbing and caught between 15-20 crabs. Joe and Megan were both really brave and held the crabs. Well the week flew by and soon enough it was time to come home. We'd heard on the news that there had been terrible rain and floods over the UK. South Croydon and Purley were badly affected, the underpass by Tescos in Purley was completely flooded up to the roof. Luckily for us things had died down and water had drained away by the time we got home.

Things have been fairly quiet since weve got back. Weve had the pool out a few times which the kids enjoyed. Joe seems to occupy himself but Megan is getting really bored. She really needs to be doing things. She has a structured routine during the week which she really needs to stick to. Things will be better next year when she will be able to go to the playschemes. The disability playschemes are for special needs kids from the age of 5. Social services run an excellent scheme, the kids have a whole week of full time activites. All the carers are qualified and have loads of experience.

Well Joe starts back at school on September 5th. Hes a bit worried because he will be with a new teacher. She is very strict and quite scary. I must say though all the kids respect her and she gets good results. Megan will be starting in reception on September 17th, she is really looking forward to it. The school have advertised for the support workers post but i dont think anyone has been interviewed yet. It will have to be someone special that gets this job, they will need to deal with all of Megans medical needs. Im still waiting to hear when the hygiene room is being built, but i dont expect things will be in place until at least christmas. The support worker will need to be trained in catheterisation and be trained with her physio. Her physio is quite intense so will take a while.

We are back at Great Ormond Street on September 10th to see the spinal surgeon. Megans curve seems to have progresses again. The surgeon said she would need more surgery every 6 months. Its as though she just recovers from surgery and then shes back in to have it all done again. She copes really well but is getting to the point where shes asking questions. Mainly WHY?WHY?WHY?

If you get a minute please stop by and leave a message for my friends little boy William. William was diagnosed with ALL when he was only about 8 weeks old. He has been treated at GOSH and was due to have a BMT today. Unfortunately there is no more the doctors can do for him and he has gone home today. Things arnt looking too good and im sure Brian, Kaye and little Laura could do with some extra prayers right now. Thankyou.
WILLIAMS PAGE



Joe is going to be on 31st August. I cant believe by baby is growing up so quickly. He lost his first tooth a few weeks ago.
Were just going to have a fairly quiet day and then have a family BBQ in the evening. He wants a nintendo ds this year. Ive told him we cant afford it and hell have to wait and see, lol.

Anyway have to dash, got loads to get sorted.

Tuesday, July 10, 2007 3:46 AM CDT

Well the wedding went really well, the weather was the best weve had in weeks. Emily and Matt are now Mr and Mrs Brown and look forward to a long and happy life together. There also expecting a new baby due in January so theres lots to look forward to.

Joe and Megan had a great day and were really great in there roles of bridesmaid and pageboy. Joe looked so handsome in his suit and Megan just looked like a princess.


Joe is on the left with Adrian the other pageboy



Matt, Emily and there daughter Ellie


Megan pushing herself down the aisle


Joe, Adrian, Hannah, Donella, Joe, Megan and Ellie


Joe looking handsome


Megan in the limousine with my cousin Julie (Emilys mum)


Joe, Megan and Hannah


Megan in the evening, she was asleep 10 mins after this photo was taken


Me by the wedding car


Megan throwing confetti over Emily


Emily and her dad Cliff on the way to church. Cliff is currently having treatment for lung cancer. You would never believe it to look at him , he looks so well.


Well thats all i have time for, for now, i have to get Megan from nursery. We are off to New Milton on Saturday to The Thomas Ball charity lodge. I will do a proper update when we get back, hope youre all well.


http://www.youtube.com/watch?v=HEuQn5rWPa0

You tube video of Madelaine Macann

Tuesday June 26th 16.43 GMT

src="http://lilypie.com/pic/070627/oMrt.jpg" alt="Lilypie Next Birthday Pic" width="60" height="80" border="0" />



Wow, again i have left it so long. Not much has been happening really. Megan is doing well following her surgery. She still has one stitch at the bottom of her spine that i will need to get cut. Its been 7 weeks since surgery so it should of gone by now. We are just waiting for Megans new callipers to come through. Because she has grown so tall now they have been sent off to be made longer and also to have some knee joints put in. At least when this is done we will be able to sit her down in them, it will be much easier. Were back at GOSH in September to see the spinal team and probably to book her next operation, its never ending.

Well Joe and Megan are very excited at the moment about my cousins wedding. Megan will be a bridesmaid and Joe a pageboy. The wedding is on 7th July so only about 10 days to go. Im sure there wont be a dry eye in the house. My neighbour Sophie is going to be doing Megans hair on the day. She has decided that she wants ringlets. Sophie has had a practice run and Megan loved the curls.


Proudly showing her curls.

A few weeks back we went to my friends sisters wedding reception. I have know Becky since she was 15 and i was 16 and we have been friend since. The kids both had a great night playing with Isobelle Beckys daughter. Isobelle is 8 and firm friends with Joe and Megan


Joe and Megan


Joe, Megan and Isobelle

Well i dont really have much more to tell you, were off to New Milton for a holiday on 14th July so i will try and post a quick update and some photos of the wedding before we go away.


Megan being a poser


Megans first school picture, she looks terrified. Also having a bad hair day as mummy didnt realise it was photos


Class photo, sorry its small



My friends little boy has recently been diagnosed with ALL. If you can spare anything to help sponsor a parachute jump then please do. All money raised will go to lion ward at great ormond street hospital where William is being treated.

PLease stop by and say hi to William and his family. www.caringbridge.org/visit/williamhaite

Friday, May 18, 2007 22.08 GMT

Just a quickie to let you know Megans surgery went very well. She had her operation on her spine Wednesday May 9th and we were home by the Friday. She was in a lot of pain after but is now doing great, you wouldnt believe what shes just been through. I will do a proper update in a day or 2.

Please stop by Penelope, www.caringbridge.org/ny/penelope She has been battling Neuroblastoma for ages now. She has been on Hospice for ages and is fighting all the way. Her dad has done an update and its very hard to read what this little girl is going through, offer youre support.

Also take a minute to go to www.findmadeleine.com



Shes been gone 2 weeks now, someone must know something.

Wednesday, April 4, 2007 21.36 GMT

I cant believe it has been so long, sorry to keep you all waiting. We have been so busy lately that everything else has taken a back seat. Megan had a great birthday and was very spoilt. She mainly got clothes as she needed new things for the summer. We had a small party for her at home on the Sunday and most of the family came around. Luckily the weather was nice so the kids could play outside.

We finally recieved a letter from the local authority regarding Megans place at school in September. They have refused to give her a place at Joes school. I am so angry and have spent hours on the phone trying to sort things out. The admissions department sent out a rejection letter with a list of other schools we could try and get her into. Most are catholic or greek orthodox, we are neither. Anyway long story cut short. We havnt got a place and its because she is in a wheelchair. We are trying to get the school to change the name in her statement, but were not getting very far. I am taking them to tribunal in June so i will update with news.



Healthwise Megan is doing ok. She is having an MRI on April 17th to check the tumour. We will get the results on 26th April. If all is well we will then be transfered to long term follow up appointments. This means we will only see the oncologists 1 a year. This is such a big step in her treatment plan with regards to the Neuroblastoma. The main thing we will then discuss yearly is the effects that the chemo has had on her.

Megans scoliosis has progressed quite quickly since she had the spinal rods put in. Following her surgery she was very straighht, but now you can see her starting to sit lopsided again. This is a sure sign she needs to have the rods lengthened now. She is booked to have the surgery done on May 9th. So great ormond street, here we come. AGAIN.

Anyway have to dash now. Have a great easter and ill update soon.

Please stop by PENELOPE and offer youre support to her family. Penelope has been battling NB for some time but has been sent home on Hospice

Well its just a quickie this time. Megan is doing great, she is still experiencing some slight pain in her back and arm. We are going to give it another week or so and if it continues we will phone the spinal team for advice. Megan is doing great at nursery and really settling well. She has lost so much time due to hospital visits its surprising she is so happy. She has lots of friends and her confidence has really grown. I have finally got her statutory statement through. She has been given 32 1/2 hours support for when she starts school in September. This is great and very difficult to get hold of so were lucky. Although they have named a differant school for her. I have filled in various forms for appeal, i just need to wait and see what happens. I wont give in though she WILL be going to school with Joe.



Megan will be 4 on Monday 12th March. She is growing so fast, its hard to believe everything she has been through in her short life. We havnt got much planned really, just friends and family coming round on Sunday. Ill get her a cake and some nibbles. Shes going to have her pressies from everyone on Sunday and then shell have ours on Monday. I will post some new photos next week some time.





"YOU KNOW"

You know your the parent of a kid with cancer when....

Kids with hair look strange to you

You can sleep anywhere & anything that reclines more than 15 degrees looks comfy.

You don't realize the sharps container is on the kitchen table until half way through dinner.

You enjoy the trip to the hospital at 3am because there aren't any cars on the freeway .

You hear a truck backing up & think it's the IV alarm beeping.

Med students ask to borrow your notes.

You wrap presents & packages with surgical tape.

Waiting for an hour doesn't seem a long time anymore compared to the wait at the first doctors appointment.

You have syringes in our cutlery rack in the dishwasher.

Every little thing can make you cry but this list has you rolling on the floor.

Monday, February 12, 2007 21.37 GMT

I cant believe its been this long. We have been so busy with one thing or another. Megan has seen the spinal team and they have removed the picc line, she is much happier without it. They have also stopped the antibiotics as her bloods were all normal. They are still baffled as to why she was so poorly before christmas. Its also been decided that she will have her spinal rods extended in May. We seem to have only just about got back to normal following the surgery in October and were soon to be back there again.


Megan proudly showing off her picc

We finally got Megans new wheelchair. It has given her so much independence. She is able to get around by herself and get some of her toys. She takes herself up to her bedroom in the lift now. She is being a bit cocky though. Whenever she sees someone new she has too show them her wheelies. She is getting on better at nursery with this new found independence. Shes even trying harder with physio aswell. She pushes her wheelchair whilst in the callipers with the help of Carole, her physio. She really has come on in leaps and bounds.


Megan pushing her wheelchair

Im still fighting with the education department over where Megan should go in September. Ive expressed my feelings of her going to Joes school. I am going to have to appeal but i will still keep fighting.

Weve managed to book our holiday for July this year. We are going to stay at THE THOMAS BALL HOLIDAY HOME. We stayed there last summer and had the best time. The club house on site do lots of entertainment for kids. They have a huge dancing/singing seahorse called Sammy. The entertainers there were so good with Megan and involved her with everything. We are going on ~July 14th and cant wait.

Megan is going to be a bridesmaid and Joe a page boy for my cousin on July 7th. Megan is so excited about wearing a pretty dress and she keeps telling me she will be a princess for the day. Im just so pleased that my cousin Emily wants them to be a big part of her special day. I cant wait to see them all dressed up.

Other that lots of hospital appointments and education appointments nothing much has been hapenning. We had snow last week which meant Joe and Megan couldnt get to school. They had great fun playing and building snowmen together.


The snow last week


Joe and Megan getting ready to play

Well i promise i will update sooner next time. I will add the links later today.

Please keep checking in on PENELOPE, shes having a tough time and her family know she only has weeks left.

Friday, January 12, 2007 2:13 AM CST

Sorry for not updating yet. Megan is doing great, she will be having another MRI in the next week or so. She is back at nursery and having loads of fun. We will get her new wheelchair on Tuesday, so i will update with some pictures next week.

Megans scan results have all come back clear. The oncologist says the recent spinal surgery has affected the appearance of the existing tumour. She will be scanned in April again.

I will do an update for you in the next day or two.

Please keep PENELOPE in youre thoughts. Her family have been told she may only have a few weeks at most to live. She has been fighting Neuroblastoma for sometime and lives in America.

Tuesday, January 2, 2007 20.13 GMT

Where do i start? Things have been hectic in our household lately. Megan was taken ill two weeks before christmas. She was running a high temperature of around 39.6 and was in a lot of pain in her back and her right arm. She was generally unwell and was sleeping alot. She was waking in a alot of pain during the night. I took her to our local casualty on 15th December because Megans physio was concerned about the amount of pain she was in. She was concerned that maybe the spinal rod had moved. Anyway we spent 4 hours in casualty being fobbed off by the doctors. Because shes an oncology patient and shes just had spinal surgery nobody really wants to get too involved with something they no nothing about. We had an xray but they had to send it to her spinal doctor at Great Ormond Street. Well by Saturday Megan was sleeping on and off all day and only waking up crying in pain. Sunday she was no better and still having temperatures. Monday morning we went to the doctors to try and get some codeine for her pain. The doctor took one look at her and phoned Great Ormond Street straight away. We were told to go straight there.

The doctor saw us straight away and examined her. She was in a lot of pain and very distressed. We were told that we had to stay in so they could rule out a spinal rod infection. The doctors put in a line and then took some bloods. Her CRP level was around 270 and should be around 5. She was started on Iv antibiotics to try and fight the infection. The doctors also ordered an emergency MRI to be done. The only good thing about this particular day was that Simon Cowell was visiting the ward and stopped by to say hello. He gave Megan a pile of CD's, including Leonas new single which hadnt been released yet. He really was very nice and asked how me and Mick were.

Well the MRI was done on December 20th. The doctors came to tell us that the scan didnt show any fluid or puss around the spinal rods. This was great news but the MRI did show that Megans tumour has grown. Of course we were devestated at this and asked to see the oncoligist straight away. The oncologist saw us in the afternoon and said they will study the MRI and compare with the old MRI done in May. We had 24 agoninsing hours to find out whats going on.

Megan was taken down to theatre Thursday morning to have a pic line put in. She is very difficult to get a line in and this is a kinder option for her. The oncoligist came to see us in the afternoon to discuss things. She has studied the MRI and looked at the urine results. She is fairly sure that the Neuroblastoma hasnt returned, but she has ordered an MIBG scan just to check for any Neuroblastoma cells. This is going to be done on 4th January. We will get the results on 11th January. Of course we are all keeping our fingers crossed that everything is fine.

We were getting worried that Megan wouldnt be home in time for christmas. BUT we managed to sneak out on christmas eve afternoon. Megan will have to stay on oral antibiotics for the next 3 months. No-one really knows what was the matter with her, but im fairly sure its something to do with the rods. All her problems started after the rods were inserted. Again she has baffled everyone. I will let you know how we get on.

We had a great christmas at home with my mum. Boxing day we went to see micks sister and her family. Joe had a great time playing in the hot tub with his cousins Jimmy and George. Both Joe and Megan got totally spoilt over christmas, im sure we need a bigger house to store everything lol.

Anyway i will update again next week to let you know how things are going. Happy new year to all.

Love Beth


Megan being cheeky just before she took ill.


Megan poorly in hospital


Megan feeling slightly better


Joe and Jimmy in the hot tub


Mick thinking hes Elvis on boxing day

Wednesday 29th November 20.34 GMT

Were still here. Sorry for the lack of updates, i dont seem to have anytime for myself these days. Megan is continuing to recover really well. Her scar is looking great and healing well. The stitches have all dissolved now and the scar is looking purple but fading so quickly. We saw Megans spinal surgeon on Friday 24th November. They are really pleased with her and again told us how pleased they were with the correction of the spine. He said her spine was so flexible, possibly because of her age. We dont have to go to see them now for another 6 months.

Megans wheelchair is no longer any good to her. She seems to have grown about 3 inches following her surgery, and cant reach the wheels to self propel anymore. Also her chair is very heavy making it difficult. We have had an ongoing battle with wheelchair services for the last few months regarding getting her a new chair. Megan is a very strong minded young lady and very determined. Since her spinal surgery she has been unable to have any independence. We have had to do everything for her, not making a very happy Megan. Anyway very long story cut short, we found the perfect wheelchair for her. Only problem being the cost, £1100 just for the chair. Wheelchair services wouldnt be able to fund the whole chair. Anyway long story short AGAIN, after a few hissy fits about how i couldnt cope much longer without a new chair, within 24 hours the chair was ordered. So one problem sorted.

Megan went back to nursery on Monday, she couldnt wait to see her teacher and friends again. She has been invited to her first party next Tuesday at the local ball park. Not the ideal venue for a wheelchair but it will be good for her. Megans teachers realised when she first started in September that they wernt going to be able to cope with all her needs. They have employed an assistant to help her. Mrs Thornton is really nice and Megan seems to have really taken to her. We have now had to apply to the local council to get Megans statement started. She needs to have an assesment of her educational needs done for school. When she starts in reception next year she will need a personal assistant for her needs. Someone will need to be able to do her catheters, have her in a standing postion for an hour a day and basically help her with all her needs. I have a meeting with the local council next Thursday to get things moving.

The next big thing is getting her into reception next year. I want her to go to school with Joe but unfortunately they have no adaptations for a wheelchair. They have had a study of the school done and applied for funding from the council. The council have refused saying its a lot of money to spend on one small school (£209.000). They are trying to get us to change her mind and send her somwhere else. Why shouldnt she be at school with her brother? and why should he have to change school? Ive been in touch with the disability discrimination act, and according to them the local council has no obligation to adapt the school. They have to make reasonable adjustment and thats all. Anyway im not going down without a fight. Im going to appeal the decision and if need be take them to tribunal. It will be tough but im not going to let them discriminate against my daughter.

Megan also went back to her playgroup on Tuesday. She has been going there for the last 2 years. Its a playgroup for children with special needs and has been a lifeline for me. Megan adores the staff especially her keyworker Fairy. It has been great for me having there support since she started there. Unfortunately Megan will be leaving there at xmas now she is in nursery. Im dreading the day we leave, i have made some great friends and will really miss them. It will be the end of an era for us all.


Megan in her party dress, her last day at playgroup. 13th December


Megan with 'fairy' her keyworker at playgroup.

Well i cant believe that xmas is nearly here. Ive nearly done my shopping i just have to wrap them now. We nearly put our tree and decs up on December 1st but, this year we did them early at Megans request. We have done the tree and put the lights up outside. Megan has a pink fluffy xmas tree in her room and Joe has a fibre optic tree in his.


Xmas tree


Snowman and father xmas with lights

Next MRI 2nd January, results 11th January. Spinal surgeon May 18th. Varioous appts February and March, just waiting for dates.

Well i will try and do an update before xmas. Have a good one.

A young lad we met at Megans hospice has just started a caring bridge page. Please stop by and say hi. MACAULEY


Megans photo is now on the home page for Christophers hospice. We have been using there services since Megan was diagnosed. Go and take a look at there site, to see how hard they all work, with very little help from the goverment.
CHRISTOPHERS HOSPICE

DANIEL BOWLER
A wonderful fund set up in memory of Daniel Bowler who died from Neuroblastoma
TOBY
A young lad who has also fought Neuroblastoma
SAMANTHA HUGHES
A little girl fighting Neuroblastoma in the UK
BRENDA
wondeful lady who designs Megans page

Saturday, October 14, 2006 12.10 GMT

Thanks to Hatty for making this banner for Megan

Well its been a long hard week, but were all home. The hospital let Megan out on Wednesday evening as she is doing so well. I think it probabaly had a lot to do with the fact she is in a wheelchair. The doctors worry about the kids falling over that have had this operation but that doesnt really apply to Megan.

We went into hospital last Thursday for Megan to have all her pre-op checks done. We signed the consent forms and the doctors checked she was fit for surgery. We were in a side room, which pleased me as were not used to being on the main ward. We stayed in the patient hotel that night, just so we were close by as the surgeon wanted us in by 7am the next day. Megan was the only one on the list and she would be going down to theatre at 8.30am.

We got to the ward at 6.50 to be told our roomhad been given to someone else. I was not very happy about this as we were put in the main ward with a 16 year old girl and 8 year old girl all with severe special needs. Everyone one was asleep and Megan was terrified as it was so dark. The nurses wernt very sympathetic and couldnt really careless how we felt. Well there was nothing we could do but try and make the best of it. We all felt as Megan was so distressed it would be better if she had a pre med. She has never had this before and was so funny when they gave it to her. The only way i can describe her was drunk. She was so funny.



Megan after her pre-med

Anyway after Megans drunken episode the porter came to take her to theatre. The anaethatist thought it best to use a gas induction as she is so difficult to get a cannula in. Megan drifted off to sleep fairly happily and only got a little distressed when she was trying to fight sleeping. The surgeon said the op would take 3-4 hours in total so me and Mick went off and got some breakfast. The weather was awful that day, very wet and windy so we went back to the ward to wait for news. we were told she was taken to recovery at 11am, so much quicker than we expected. We wernt called down to recovery until 1pm as she was being stubborn and wouldnt wake up. She was still zonked by the time we got there. By 2pm they wanted her to go back to the ward but the ward wouldnt take her back as she wouldnt open her eyes. She was answering questions by nodding her head but i told the nurses she is stubborn and wont open her eyes until she sees fit. Eventually the ward realised this and they took her back. She didnt open her eyes until about 7pm and that was only for a very short while.



Megan immpresive scar

The picture was taken on Monday and as she can see its very dry. The doctors were amazed how quickly it was healing. Monday morning was a very busy morning. David Cameron MP was having a look round the ward and came to chat to me and Megan. The whole thing was filmed and there were photographers snapping away at Megan. We didnt realise that this was shown on London tonight that evening, so we all missed it. Anyway he was very nice and was telling me has a 4 year old son that is treated at Great Ormond Street, i think he has Cerebal Palsy. I didnt manage to get any photos.

Tuesday was another busy day. After a good nights sleep we heard that Tess Daly was coming to officially open the new playroom, the comfort zone. For those that dont know Tess is on strictly come dancing at the moment and married Vernon K. She was great with the kids and spent lots of time playing and colouring with Megan. There were also a film crew and photographers but not yet sure what there doing with it.



Tess playing with Megan



Well i have to go now but will finish update soon.

Lots of love Beth and MEgan

Wednesday, October 11, 2006 4:48 PM CDT

WERE HOME



Megan impressive scar

Will update during the week

Wednesday, September 27, 2006 5:38 AM CDT

UPDATE 7th OCTOBER


Megan has had her spinal surgery. Everything went well, she is in a lot of pain and very sleepy. Her pain is being controlled by morphine. I will update again when i can get to a pc, just wanted to let you know she is doing ok.

UPDATE 28TH SEPTEMBER

Megans surgery has been rescheduled for Friday 6th October. I will let you know if this changes, i dont trust these doctors now.


Just wanted to let you know that Great Ormond Street have cancelled Megans operation. The only explanation we were given was, "something came up". Im so angry and upset they have done this to us. Megan is in such pain and needs this op. Another these bloody surgeons dont realise is its taken me a month to plan for this. Im soooooooooooooooooooo angry.


Megans first day at nursery

Monday, September 18, 2006 20.10 GMT

Please keep CHRISTI'S FAMILY in youre thoughts. After a 4 year battle with Neuroblastoma, Chrisit earned her angel wings at 9am on 19th September

Please also keep SAMANTHA HUGHES in youre thoughts. Samantha is from the UK and has been battling Neuroblastoma for about a year now. Her liver is failing and the next 48 hours are critical. Her family could do with youre support

Were back from Disney, had a great time although knackered. I will do a proper update tomorrow but will leave you a few pictures to keep you going.

Get Your Own! | View Slideshow

Megan starts nursery tomorrow so will add those photos of her in her uniform.


This is our cab that we travelled to Paris in


Our police escort bikes



Megan just loves Cinderella




Megan just cant take all the excitement


Megans first day at nursery





Please take a moment to vote for postpals, a great site putting a smile on sick kids faces.

vote for postpals with the national lottery awards

Monday, September 11, 2006 20.10 GMT

Sorry for the lack of updates. Things have been going well with us really just been busy, busy, busy.


Well last week we went to Chase at Christophers childrens hospice. Megan has been on there books since diagnosis. Every year the hospice organise a family fun day. This is where all the family can have a great day out with loads of activities at no cost. A local reptile farm had taken some lizards and snakes. They were the biggest snakes i have ever seen. Ive never touched a snake before, they feel quite dry but you imagine them to be slimey. Well Joe was quite keen but Megan was much more reserved. Every year they try to organise celebrities to attend the day. This year Booby Davro was there, he attends every year and is a great supporter of Chase, Max Clifford is very well known for his generous donations to the hospice. I got talking to his girlfriend Joe, she is really lovely and interested in the kids. Pui from cebeebies and Andrew Castle from GMTV were also there with there families. A great day was had by all and the weather held out.

Cool Slideshows

Well were just waiting for Megans surgery to come round now. We will be admitted to Great Ormond Street on September 28th and she will be having surgery on the 29th. The surgeon is going to put 2 rods into her spine side by side. He will fuse the top of the rods and the bottom. Every 6-12 months she will go in to hospital to have the rods lengthened, according to her growth. We have been told that she will be in hospital for 7-10 days, all being well. If there is any weeping from the wound then they will keep us in longer. Me and Mick both think its really important that Joe goes to school everyday. Hopefully between my mum and Micks mum this can happen. I dont know what we would do without there help. Ill keep you updated after surgery.

Well on a good note, we are off to Euro Disney on Friday. This has all been organised by the London black taxis. 100 black London cabs are taking sick kids and there families on a magical mystery tour. The cabbies are giving up there weekends to do this for families like ours. We are looking forward to this and its something nice before surgery. We have been sent a list of the things we will be doing and times. Its going to be a long weekend, well all be exhausted but it will be great. This is a once in a life time opportunity. Dont forget to keep an eye on the news and in the papers as its quite a big event and has a lot of media coverage.

Welli will do an update after Disney hopefully with loads of great photos.

Lots of love Beth


Please keep Christie Thomasand her family in youre thoughts. Christie has been battling Neuroblastoma for about 4 years and is not doing great. The doctors think she will become an angel sooner rather than later. Please stop by and offer youre support.

Check out these great links.

Toby

Samantha Hughes

Brenda
A great ladt that designs Megans page. Her page is in memory of her dad.

Beebo

Wednesday, August 16, 2006 21.00 GMT

Well firstly i wanted to let you know that Megan had her pre-op at Great Ormond Street last Friday. She had to have x-rays, ecg, medical pictures and blood tests. It took 3 attempts and about an hour or more to get blood. She has terrible veins and is so difficult to get blood from. Eventually the samples were sent off and all we needed to wait for was a date for surgery. Megan will be going in for her spinal surgery on September 29th. We will go to the hospital on 28th September just to have all the tests she needs to have done first. The surgeon has told us that the operation will take about 3-4 hours, all being well of course. She will have to wear a body brace for about 4 months, this i know will be difficult for her. Because she isnt able to walk the brace will restrict her from doing alot of everyday things. When we get home the ot's are organising for us to have a manual hoist, this should make moving her more comfortable for her and easier for us. So we have a date, not looking forward to it but it has to be done.

Get Your Own! | View Slideshow

Well now we have a date for surgery, we will be able to go on our trip to Euro Disney with the magical taxi tour. We have all been looking forward to it so much. Something to look forward to before surgery. We leave on September 15th, just for 3 days. Megan cant wait to see Cinderella. Shes beginning to think she really is a princess, but of course to me she always will be.

Well tomorrow will mark the first anniversary of my dads death. I cant believe that he has really been gone a year, it feels like yesterday. I will be going to the church tomorrow with Joe and Megan to lay some flowers on his grave.


dads grave with all his flowers


Well Joe is going to be 6 on August 31st. We havnt got any big plans but will try and do something for him. Last year his birthday was the day after the funeral, so didnt feel much like celebrating. Hes really into Dr Who at the moment. Were going to get him the remote control dalik, and some dvds and games etc. The only thing he wants is Dr Who stuff. I havnt seen any Dr Who cakes so i might have to make one, lol.
Happy birthday

Well nothing else to report at the moment so ill be back soon.
Lots of love Beth


Check out these great sites

TOBY

SAMANTHA

BRENDA

TOM BALL CHARITY

GEORGIES FUND

Thursday, July 27, 2006 14:06 GMT

Get Your Own! | View Slideshow

AUGUST 11TH

MEGAN HAD PRE-OP TODAY AND SURGERY IS SCHEDULED FOR FRIDAY SEPTEMBER 29TH, THIS WILL BE EXACTLY 3 YEARS TO THE DAY SINCE SHE WAS DIAGNOSED WITH NEUROBLASTOMA.

Well where do i start? Life has been hectic these past few weeks. I still have the ongoing battle with the education department regarding Megan going to school next year. Her place is all sorted for this September for nursery, but the battle is for reception. Joes school have finally had a report done to see if the school can be adapted but we need to wait till September to get the written report. No news is good news i suppose.

On the 8th July we went to New MIlton for our holiday. We had a great time and the kids really enjoyed themselves. We went to the beach, made sandcastles, all the normal seaside stuff. We took them to a place called Mudeford and went crabbing. Mick did really well and caught loads of

We spent every night at the clubhouse so that Joe and Megan could dance with Sammy Seahorse. This was the clubs mascot for the kids. They learnt all the songs and dances (so did we). The entertainers were fantastic with Megan. Despite her disability she was involved in everything the other kids did. It was hard watching her in her when all the other kids were running about, but thats something we have to get used to. She doesnt let it ruin things for her so why should we? Anyway a great time was had with lots of sun, good food and

Huge thanks to The Thomas Ball charity who organised for us to stay in one of there holiday homes. Elaine and Trevor have been great. ( i will be adding a banner link to there site but pc playing up so check back soon.)

will be celebrating his 6th birthday in Were hoping he will have a great time after last year. My dads funeral was the day before so we didnt feel like celebrating much.

Anyway i will update again with pictures of the holiday. Hope youre all enjoying some hot weather ()

Lots of love and



Check out these brave kids

TOBY

SAMANTHA

Tuesday, June 20, 2006 20.10 GMT

Sorry for the lack of update. I cant believe time has gone by slow quickly.

I am selling pin badges for the Neuroblastoma foundation. If anyone would like one then please e-mail me and i will happily send them out to you. They are £1.00 each.

Firstly i wanted to let you know that BEEBOS mum has given birth to a healthy baby girl last week. Amy Grace is gorgeous and you can definately see Jamie in her.

Megan is doing ok at the moment. Were due back at Great Ormond Street next Tuesday (27th) for uro-dynamics. The catheterisation is going well and Megan has no objections to it being done. She is having Oxybutinin 3xdaily. This is to keep her dry in between catheters. At the moment it doesnt seem to be working and she is very wet in between. Im not sure if its the medicine not working or the fact that she seems to be drinking gallons of juice. This hot weather really does give her a thirst. But when i do the catheter she is still producing a lot of wee.

Megans back is still causing great discomfort. Im sure that her scoliosis has progressed. We are giving her codeine for the pain, but this can cause constipation. Not a good thing when you have a neuropathic bowell. She will be seen by the spinal team in August for pre assesment. Surgery should be about 6 weeks later. I have explained to the surgeon that Megan has been nominated for the magical taxi tour on September 15th. magical taxi tour. The london black cabs take sick kids on a mystery tour to Euro Disney. Megan was nominated by Great Ormond Street hospital. The surgeon has made a note of this and thinks it is really important for us all to go.

One thing that is causing a real headache is finding Megan a suitable school. She is due to start nursery in September and we have found a school that will meet her needs. The greatest problem is finding a reception class for September 2007. Ideally i would like her to be at Joes school. Unfortunately they are not completely accesible for her wheelchair. The school needs a lot of adaptations done and it may not be possible. We are waiting for an architectural report to be done. If the report says its possible then i will fight for the work to be done. The school will need to put in a bid to get funding. I think the school think it is too much work for one child. I feel as if Megan is being penilised for having cancer, i keep telling people she isnt a divvy. Unfortunately too many people judge kids in wheelchairs. I have also been to look at another school in the Croydon area. This school is already wheelchair accesible and has a little boy in reception in a wheelchair and a girl that is just about to leave in a power chaair. The school was lovely and the headteacher was so welcoming and friendly. She feels that every school should cater for kids with disabilities. This will be my second choice, i still feel she should be at school with Joe. I refuse to move him. The last 3 years have all revolved around Megan. He is settled at school and made good friends. I dont feel his life should be changed again. I will let you know how we get on, but i know i have a fight on my hands.

Well were all enjoying the lovely hot weather. Joe and Megan have been in the paddling pool. Megan can actually play in there without me or Mick having to get in with her. Last weekend she spent 5 hours in there on Saturday and about 4 on Sunday.

Joe and Megan in the paddling pool.


With shannon from next door.

Another thing i forgot to mention is that my dads headstone has finally been put at his grave. Its really weird seeing his name on a stone, very final. At least hes now seen as a person rather than just a grave.

Dads headstone


Well nothing else to report really. Hope you all have a good week. Will update real soon. Lots of love Beth

Check out these brave kids

TOBY

SAMANTHA


A great charity set up by Thomas Ball before he lost his battle with Neuroblastoma

Well we have just got back from Great Ormond Street and its good news. Megans MRI scans came back all clear, no sign of disease. The residual tumour is still laying dormant. The oncologist has said that we will have another scan in November, then next May. After this there will be no more scans. Its quite scary but also a big milestone. Megan would of been off treatment for just over 3 years at this stage. The greatest chance of relapse is upto 3 years. Obviously this disease is never going to be free of us but we have to start moving on.

At home we are currently having the through floor lift installed. A job that should of taken 10 days in January has so far taken about 5 weeks, and were now into May. Hopefully this work should all be completed by tomorrow. This will certainly make life alot easier for me and Mick, and also give Megan alot more independence. Were just waiting for the Ot's to let me know about a hospital bed. She has been added to the list but we all know what waiting lists are like.

We have also been offered a place at a local nursery for Megan to start in September. They are currently offering afternoons, but i have explained that she really needs a morning place to fit in with her needs. I am currently waiting to hear back from them. Megan is doing great at pre-school at the moment. She is really missing Mollie now and keeps asking when she can see her. She knows that Mollie is in heaven with grandad, and there eating lots of chocolates. I think that its all been bought back to her by the death of another little boy.

Well thats all for now, i will try and update sooner but there never seem to be enough hours in the day.

Lots of love Beth, Mick, Joe and Megan




Megan and Joe enjoying the sun

Thursday, April 20, 2006 9:11 AM CDT

Sorry to take so long in updating. Things have been pretty hectic around here. Firstly i have done my catheter training(at last). Megan is now being catheterised 4 times a day. I was very worried about doing it but have to say im finding it really easy. Megan isnt objecting too much either. The doctors have prescribed Oxybutinin, this will hopefully keep her dry in between catheters. So far the theory is working during the day but she wakes up really wet in the mornings. All trial and error i suppose.

We are in the process of getting Megans through floor lift fitted. The builders arrived at 8 this morning mob handed. Well cut a long story short, there has been a major muck up. The builders that built the property put the central heating pipes straight through the middle of where the hole should be. Now there are big delays and the lift wont be going in for at least 3 weeks. Im really annoyed as it should of been finished at the end of next week. Never trust builders.

Well you may remember from my last update that Megans little friend Molly passed away on April 5th. Today was the funeral, i didnt take Megan as i feel it would confuse her. It was a lovely service but very sad. Mollies older sister chose one of the songs. Twinkle twinkle little star, as you can imagine not a dry eye in the house. Then the vicar spoke about Mollies life. He said how much she enjoyed going to Opportunity playgroup, and playing with her friend Megan. They were such good friends, although i know there only 3. The pull bearers carried Mollie out to somewhere over the rainbow, very moving. I have bought Megan a disney princess balloon to release later for Mollie. She really misses her and keeps asking where she is. Ive explained that Mollie is now in heaven with grandad, and that he will look after her. Shes happy with that.

Megans next hospital appointment is on May 9th. This is for her 4xmonthly MRI scan. We get the results on May 18th. After this she will have another scan 6 months later, then another 6 months and then no more scans. Its great to think she is doing so well, but the thought of having no scans terrifies me. But the oncologist is so happy with her, who am i to argue?

I still have no news on her spinal surgery. Her curve has definately got worse over the last month or so, and is now hurting her. I will just keep phoning the hospital until they get fed up of me. They just keep telling me it should be around September time.

I will try and update real soon.

Lots of love Beth


I will add my links in the next few days, pc playing up and have to dash out now.

I

Thursday, March 16, 2006 11.55GMT

WEDNESDAY APRIL 5th 11.24am

You may have remembered me talking about Megans little friend Mollie from playgroup. She had heart surgery 3 weeks ago, had problems since birth. Well she was really poorly but seemed to pick up last week. Ive just redieved a text from her mum letting me know that Mollie lost her fight at 10.40 this morning. She was 3 years old and Megans best friend from playgroup. Im devestated, please keep her family in youre thoughts.



What a manic week. Megan really enjoyed her birthday. She has been completely kitted out with new clothes for the summer. We had a small family party on Sunday for her. She really is quite funny. When we bought in her cake for her she started sulking and looking towards the floor. I think she just gets embarrased. Monday she was absolutely exhausted from the day before. She had to go to playgroup, but was really grumpy. I thought she might be brewing something but i think shes just turning into a madam now shes 3. Lol.

Tuesday we had to take Megan to wheelchair services to try and sort out the lateral support, or should i say lack of it. Now that her scoliosis has progressed to 60 degree, she sits very curved. Her hips are not lined up properly causing other problems. Because her chair is so small its very difficult to find things to add, theres just no-where to put things. The therapist thought they might need to order a new chair, but she just phoned me and they think they have found a solution. Another big problem was the height of her chair for me pushing her. The handles are about 4" to short for me. I have to bend slightly which is no good for me or Mick. Short of doing that i push with one hand, again being no good for my mick. The therapist has said they can supply longer handles but then the handles wont be able to fold down. Ordinarily this would be a problem with the size of my boot, but i get a new car next week, so hopefully problem solved.

Health wise Megan is doing great. We go for catherter training next week, not bad since should of been done in January. Megan is also now on bowell management. I have to give her a suppository in the evening and then sit her on the potty. I have stopped all her medicines to make her poo bacause she kept having accidents. We have only been doing this for 2 weeks but so far so good. Shes only had a few accidents. We still havnt heard from Great Ormond Street with a date for surgery but it should be September time.

Megan will be due to start nursery in September. Im now unsure what to do because i dont want to get her into somewhere new and then shes off for ages. I think i will probably just keep her at the playgroup she is at now. She loves it there and the staff all no her well. One of Megans little friends had heart surgery on Tuesday. Her mum text me and said things wernt great. The doctors dont hold out much hope and she is critical. She is 3 just like Megan. This is such a cruel world sometimes.

Megans article appeared in the local paper last Friday. It was a fantastic story and really raised awareness into Neuroblastoma and the service that the hospice provide. I have been approached by a journalist about her story going in a national paper. Of course i said YES i was interested. Anything to raise awareness into Neuroblastoma, and although Megans has long term problems she is a success. I will keep you updated.

Well have a good weekend, lots of love




Very excited with her new Cinderella dvd


More presents


With cousin Grace, 4 days older than Megan


Not impressed with her cake or singing happy birthday


Mmmmmmm maybe i do like cake after all


Check out these great links below.

TOBY
This little bot also had Neuroblastoma at the same time as Megan, and hes only a little bit older.

SAMANTHA
This little girl is currently fighting Neuroblastoma and she will be 3 on 18th March

CAITLIN
A lovely little girl with Cystic Fibrosis

BRENDA
This lady designs Megans site and has a lovely tribute to her dad.


Set up in memory of George Hayhoe who lost his battle with Neuroblastoma

THOMAS BALL
Set up by Tom ball himself before he lost his battle with Neuroblastoma

DANIEL BOWLER MEMORIAL FUND

Friday 3rd March 19.20GMT

Today we had an appointment with Megans spinal surgeon at Great Ormond Street. Her 40 degree scoliosis has progressed to a 60 degree curve. The surgeon has decided that he wants to put her on the list for a spinal growth rod. This means using two rods to try and straighten her spine. As she grows she will have to have the rods extended. When she is a teenager she will then have her spine fused. Its a big thing but something that needs to be done. The waiting list is about 6 months. The surgeon explained that surgery will take about 3-4 hours, and she will need to spend about a week in hospital if everything goes to plan. This is far better than i thought.

On a lighter note Megan will be appearing in our local paper next Friday. The Croydon Advertiser is trying to promote the services of the hospice that covers the Croydon area. The hospice asked us if we would let them print Megans story. Of course if it raises awareness into Neuroblastoma and the services available it can only be a good thing. I explained what a cheerful place the hospice is, Joe and Megan love going there. We also have a community worker Val that comes and gives respite care at home. I dont know how we would of managed without her over the last 2 1/2 years. I will scan the article and add to her site.

Megan will be celebrating her 3rd birthday on Sunday 12th March. Such a big milestone when we didnt think she would still be here with us. Nothing big planned really, just family visiting and lots of pressies and cake. I will update with some photos at a later date.


http://www.GlitterMaker.com/ - Glitter Graphics





.

Anyway have a good weekend. Lots of love


PLEASE REMEMBER TO SIGN THE GUESTBOOK, SO WE KNOW YOUVE STOPPED BY.

Check out these great links
toby
A great little lad. Similar problems to Megans from Neuroblastoma

caitlin
A lovely little girl with Cystic Fibrosis

brenda
this lady designs Megans site and has a lovely site in memory of her dad.

samantha
A little girl currently fighting Neuroblastoma

postpals
a great site sending smiles to sick kids

georgies fund
in memory of George Hayhoe who lost his battle with Neuroblastoma

thomas ball charity
Set up by Tom Ball himself, before he lost his battle with Neuroblastoma

daniel bowler memorial fund

Wednesday, February 1, 2006 2:56 PM CST

UPDATE MONDAY FEBRUARY 6TH 2006
Just to let you know i will be doing an update on Wednesday night after we have been at Stanmore, The Royal National Ortheopedic Hospital. The fundraiser went well and raised nearly £2000, and theres still more coming in. I want to say thankyou to staff, the locals and all our friends that came to The Pawsons Arms pub, Croydon.





more photos of Megan and family

Sorry its taken so long to update. I have been so busy and there never seem to be enough hours in the day. Everyone is well on the health front now. Megan spent the night at the local hospital 3 weeks ago, not really sure what the problem was but the doctors put it down to a virus. She was very floppy, lethargic and really was the same as when she was first ill over 2 years ago.







There has been a big fundraiser organised for Saturday night. This has been organised by Megans big sisters boss. Jenny works at a local pub and all the regulars want to raise money to send Megan on the holiday of a lifetime. People are so generous, but its sometimes a bit overwhelming. I would never ask anyone for anything but think its great that people that dont even know her want to do this. I will let you know how the night goes and add some pics. Anyway i will try and do a proper update in the next few days.

Lots of love



Check out these great links below.




A great lady that designs Megans page and has a great site in memory of her dad










The Daniel Bowler memorial fund

Saturday, January 7, 2006 14.50 GMT

MEGANS SCANS CAME BACK ALL CLEAR


Megans little star certificate and award from Cancer Research


more photos of Megan and family


Megan and her big sister Becky


Megan pushing her buggy in her callipers


Megan dressing up in one of the outfits from her christmas elf


Joe wearing the Narnia outfit that georgies fundsent through for him at christmas





I want to say a huge thankyou to Sally Barett for being Joe and Megans christmas elf. postpals try to organise it so that pals have an extra smile or two, and there siblings dont feel left out. Both the kids were spoilt rotten when a HUGE box arrived for them. Also a great big thankyou to Georgies fund (link at the bottom). They sent Megan baby Annabell and accesories, and Joe got the dressing up costume from Narnia and Narnia toys to go with it. Im hoping that i can have all there toys sorted by March to accomodate Megans birthday presents.


The childrens presents from the christmas elves


Megan and her physio Carol

Wow it seems like ages since my last proper update. Well where do i start. We all had a great christmas. We went to my mums christmas eve, so the children could wake up with there presents rather than dragging them out in the morning from home. Me and my mum went to midnight mass, something ive never done before. It was very cold and very long. After we left the church we went into the graveyard to put some lanters on my dads grave.

Christmas morning Joe woke at 5.30am, he was sharing a room with his big sister Jenny so didnt disturb us until about 7.30. Megan however had to be woken at about 9am. Joe and Megan were both spoilt rotten and spent the morning playing with there new toys. We had lunch at about 3pm. After clearing the table and clearing up it was time to open the pressies from under the tree. We have never ripped everything open at once. This way the kids get to know what they have. Santa was good to me also, i got a new lcd monitor, a scanner, loads of perfume. My friend got me a tiffany necklace. It was strange my dad not being around, something we are going to have to get used to.

New year was going to be a quite one as we had no babysitter. Well my mums neighbour decided at the last minute to have a party. We got an invite and had a great night. Megan fell asleep at 11.45pm and missed big ben and everything. She was feeling a bit under the wether the whole of christmas, and before really. Shes been to the doctors so many times lately and nothing has been done.

Well eventually she got antibiotics. She had such a bad snot problem, i took her back and told them i wasnt leaving until something was done. The gp gave me a prescription for antibiotics and we started that night. 36 hours later she was much better and the nose problem had dissapeared. The day she finished the ab's she started to have a terrible cough. Finally on Wednesday this week i phoned the gp and told them i was worried. I said i wanted to see her usuall doctor. There was no appinotment with him and they offered me someone else. I have already seen 2 doctors that no nothing about Megan, only what they have read. They agreed i could see dr Johnson as he knows her, and knows what she is like. She was very floppy, lethargic, febrile. He phoned the local hospital where the sho asked us to come in.

After waiting for what seemed like ages the nurse came to triage Megan. I told her that she had been diagnosed with Neuroblastoma stage 1V 2 years ago. She asked me what that was. Cut a long story short, they thought i was thick until they actually realised i did know what i was talking about. The doctor put a line in to get bloods. She had a catheter put in for urine tests to be done, and the doctor also requested a chest x-ray. We were admitted to the childrens ward and just had to wait. Megan came to life at about 1.30 in the morning, typical when im exhausted. The bloods all came back normal, as did the urine tests and the chest x-ray was all clear. The doctors were a bit baffled, and have told me that they think its virul.

We were sent home on Thursday lunchtime, where upon Megan slept all day and all night. Friday she seemed alot better and was awake all day. She woke up this morning a bit cranky again, with the most terrible cough. She has her MRI next week and its been decided to include images of her head aswell. She has been complaining of eye pain for some months now, so it makes sense to include it in the same scan, otherwise she will need another anaesthetic.

I will update with her results in a couple of weeks. We see the oncologist on January 19th for results. She just hasnt been well since the scarlet fever really, so we just want these scans out of the way so we can be positive about everything.
Lots of love Beth, Mick, Joe and Megan

Please sign the so we know youve stopped by.

Check out these great links below

This is a little boy called Toby, he is from the UK. Toby was diagnosed with Neuroblastoma stage 4 the same time as Megan, had surgery within a few days of each other and has problems with his bowell, bladder and leg weakness. His family would really love to hear from you.
bobby wright
This little boy needs to raise funds to get treatment in the USA


The Daniel Bowler memorial trust fund


A fantastic lady, she designs Megans page and has a wonderful site in memory of her dad.

Friday, December 23, 2005 7:21 AM CST

Hope you all had a great christmas. Joe and Megan were really spoilt as usuall.





I will do a proper update after new year. Hope you all have a good one.




Check out these great links below






fantastic charity offering uk holidays for families

Monday, November 28, 2005 23.00GMT

Monday 5th December 21.00

Just a quick note to let you know that we are off to Euro Disney on Thursday. We are going with the Thomas Ball charity, check out the link at the bottom of the page. Joe and Megan are so excited they are driving me crazy. I have to say i am a little excited myself. I will update with photos when we get back.

Well we have just got back from our weekend away to TJ's. This is the new lodge that the Thomas Ball Charity own and kindly gave to us for the weekend. We arrived on Friday and it was freezing. It took ages to get the lodge warm. Didnt do anything on Friday, but thought we would go out Saturday. We went to Bournemouth beach and walked around, it was really cold and blowly but we did have fun.

We went on a boat trip around the sandbanks, which Joe and Megan really enjoyed. After this we went on to Boscombe to do a bit of shopping. I got a few xmas pressies, and i got Megan a really cute santa suit.




All in all we had a great break and thank The Thomas Ball charity for offering us the break.




Joe enjoying the tiny bath at the lodge


Enjoying a dvd before bed


Milford on sea




insisted on going on the top bunk with Joe

As you can see we had a great time. Megan has got over her scarlet fever really well. She has had a bit of a cold the last few days, and been a bit unsettled at night. No more hospital appointment until January, which is when we have her 4 monthly MRI scan. This will be done under anasthetic again, its far kinder for Megan. And we go for catheter training on January 11th.

Will update really soon, hopefully with some more exciting news. Check out the links below. Samantha is a little girl fighting Neuroblastoma. She is only a few days younger than Megan.

Friday, November 18, 2005 11.00 GMT

Thanks for get well wishes for Megan, she is feeling much better now. She is now back at school. Ive been told that scarlet fever can lead to problems with youre heart or kidneys later on in life. How much of this is true, i dont know but i am going to do some research.


Well after waiting for 9 weeks for Megans uro-dynamics results i got in the car and drove to London. I have left countless messages and heard nothing so i thought i would drive there and demand some results. The nurse in the department told me that she had lost the notes and couldnt inform me of results, (how convenient is that). Anyway the results showed that she has some bladder control but she does leave a bit of residue. To cut a long story short, we would need to catherterize eventually, maybe a year or so. I explained that Megans wee to me always smells a bit stale. We have decided to start catheter training on January 11th. We will only do it twice a day but she will get used to it, and we can at least drain her bladder.

Whilst at Great Ormond Street we took a cheque to the fundrasing dept for £1,200 This was money that we had in leau of flowers at dads funeral. I wanted to specify that the amount of money goes directly to Elephant day care, where Megan got her chemo, rather than being absorbed into main funds. I think he would of been proud of the final amount.

Megan still has no dummy, i though we would have problems when she was really ill, but she has mentioned the D word. She keeps telling me she is a big girl now.

Well we dont have anymore trips to the hospital until after christmas now. To think that two years ago we didnt even know if we would make it home for christmas day. We will be spending christmas eve and christmas day with my mum and sister, then boxing day we will be going to see Micks sister and her family. Ive nearly finished my christmas shopping, and me and the kids will get the tree up about December 1st. We love to do things early.

I will update again real soon. Love Beth

Joe and Megan with baby Ellie





Check out these links
This little girl has recently been diagnosed with Neuroblastoma stage 4

Monday, October 31, 2005 16.36 GMT

Sorry for lack of updates, been really busy. Also my computer has broken and i have been waiting for 2 weeks to get it fixed. HOPEFULLY the engineer will have the parts to get me up and running again tomorrow.

Nothing to report really. I am still waiting for the results of her uro dynamics tests that were done about 7 weeks ago. I keep phoning but getting no answers. We dont have any more hospital appointments until January now.

Next week i am going to have a look at 2 future schools for Megan. One is already wheelchair accesible, and the other is where Joe goes. In an ideal world i would like for her to go to school with Joe, but unfortunately there is no access as yet. The school is having the builders in to see wether it would be possible to adapt the school. The good thing is she doesnt start until 2007, so we have time to look at our options and see what will be best for Megan. Im looking forward to both children going back to school tomorrow, this last week has been really hard work. They fight like cat and dog.
Update 7th NOvember 2200

We have spent the whole day at casualty with Megan. She was running a high fever for 2 days and developed a nasty blotchy rash. Anyway after waiting 8 hours we were told that she had scarlet fever. Heres a picture of her looking rather blotchy.


Update 2nd November

Megan woke this morning and couldnt find her dummy, (id put it in my pocket). She had already decided that she was going to give it to father christmas for all the new babies. In return father christmas was going to give her a new doll. Anyway she went the whole day without it and went to sleep tonight without it. I have added a photo of her new doll that has taken dummies place, i think you will agree her and Stephanie (her new cabbage patch baby look really happy)
Ive also just heard about a little girl girl called Samantha, she lives in the UK and has recently been diagnosed with stage 1V Neuroblastoma. Please stop by and offer her family some support.
SAMANTHA

I will update real soon with some recent photos.
Lots of love Beth, Mick, Joe and Megan

This page was lovingly designed by BRENDA






Check out these great links

Monday, September 26, 2005 3:37 PM CDT

Sorry havnt updated sooner. Life seems hectic at the moment. Well as you can gather Megans MRI scan went really well. She is still NED. Megan has been off treatment for 17 months now , but the fear of relapse is always there. This week is 2 years since diagnosis for Megan. So much has hapenned in that short space of time.



Megan also had some bladder assesments done at Great Ormond Street. Early indications show that she does have some bladder control. We dont know how much yet, we are still waiting for an appointment with the Urologist to get definate results. Hopefully this means that we can wait to start catherterising her. The surgeons put a small tube through Megans tummy to use for the tests, and all the time it was there Megan new when she was having a wee. Now the tube has gone she seems to have no knowing of it. STRANGE.

Megan is now back at playgroup and enjoying it so much. Im in the process of sorting out her nursery place for next year. Joe is now in year 1. I cant believe he is in his second year of proper school, they grow so fast.

I have spent today at the local hospital with Joe. He has glue ear. The doctor used a small vacuum to clear the wax. Now he can hear again.

Anyway getting tired, so off to bed. Will update really soon.

Lots of love Beth

I have added photos of the horses and hearse from dads funeral to album.





This page has been lovingly designed by BRENDA

Sunday, September 18, 2005 3:02 PM CDT

Sorry its taken so long to update. Megans scans were last week and they show that she is still NED. Her VMA levels were within normal range and the scan showed no uptake of Neuroblastoma in the dead tissue.

Megan also had her bladder assesments done and tests showed that she does have some bladder control. We now have to wait for a follow up appointment with the urologist. I will do a proper update in the next few days.
Lots of love Beth


Megan holding the tatty teddy she won at christophers childrens hospice family day

Thursday, September 1, 2005 21.57GMT

Well whats been hapenning. We had my dads funeral Tuesday. Over 200 people turned up to say goodbye, he was a popular man. He had lots of lovely flowers and we also collected over £200 in donations. The money will go to Great Ormond Street, a charity im sure he would approve of.


He was taken on his final journey by a horse drawn hearse, they were spectacular, im sure he would of approved.

We celebrated Joes 5th birthday yesterday, (thanks for his cards). He seemed to have a great day and got loads of new toys.


Joe is really in to dressing up these days

Megan also loves dressing up


Megan loved the donkeys at Christophers childrens hospice family day in Guildford


So excited she had to have two goes

If Megan can do it so can i.


We are back at Great ormond street next Wednesday for Megans next MRI scan. We will get the results on 15th, so we will be prying for clean scans.

On a lighter note, i want to say congratulations to my cousin Emily and her boyfriend Matt. Emily gave birth to Ellie just after 8am, 1st September Mother and baby both doing well.


Joe having a cuddle with baby Ellie

I will update very soon with results.
Lots of love Beth

Also to let you know Beebo, a little boy that was fighting Neuroblastoma gained his wings yesterday, his family could do with youre support. His link is at the bottom of Megans page

September 7th 2005, 21.50

Just a quickie to let you know Megan had her mri under ga today. It was far easier and kinder to do it this way. Everything went well but we will have to wait until Thursday 15th for the results. Im a big fan of ga for this procedure now, sedation definately isnt for Megan

Tuesday, August 23, 2005 2:11 PM CDT

Not much to say really. Were still all running on autopilot since my dad died last Wednesday. His funeral has been organised for next Tuesday, the 30th August. We have organised a horse drawn hearse to take him on his last journey. It sounds as though there may be a lot of people there.

The day after my dads funeral is Joes 5th birthday. Were going to try and make it a really special day for him, he deserves it.

Well September 7th were back to Great Ormond Street for Megans MRI scan. She will have the scan under GA as she always fails sedation. We will get the results on the 15th September. Megan will then have her uro dynamics tests done on 14th, and 15th September.

I will do a proper update soon.

Lots of love Beth


Happy 5th Birthday to Joe, Wednesday 31st August



getting ready for a night out on holiday


taking a bath in her boat

Wednesday, August 17, 2005 9:25 AM CDT

Sorry havnt updated sooner. We went away on holiday but had to come home early as my dad was very poorly. He has been fighting prostate cancer but it beat him. He died in the early hours of this morning. I will update as soon as i can, but my computer has also crashed and im having to use my sisters when i can

Lots of love Beth

Friday, July 29, 2005 15:30 GMT

Hi

Not a great deal to update really. Sorry i havnt done it sooner. Megan is adapting really well to her new wheelchair. Shes only had it 2 weeks and is already learning tricks, not bad for a 2 year old. We are still waiting for spoke guards from wheelchair services, but knowing Croydon that will take about 6 months. I have noticed that when we take Megan out in her wheelchair we get alot of stares. Most people look and smile but you get the odd one that just cant take there eyes off her.

Well its now the summer holidays, and the kids are driving me crazy already. To think we have another 6 weeks. Im trying to think of things to do to keep them occupied. August 6th we are going away for a week. Were off to Hampshire to spend the week in Toms retreat. This is a chalet owned by the Thomas Ball Charity, and they have kindly offered for us to stay there. We are really looking forward to it. The only thing is Joe is convinced we are getting there by plane. We hope to spend 1 day in the isle of white, at least Joe will get to go on a boat.

Just after we get back off holiday it will be Joes 5th birthday. We have organised for him to have a party at the local ball park with all his school friends. Megan enjoys going there as well, so it should be fun.

We dont have anymore hospital appointments now until September 7th. This is at Great Ormand Street and is for her next set of scans. I hate this time, we will only have to wait a week for the results this time. Megan will be having her MRI under GA this time, and for future scans. The last time she had scans the doctors spent over an hour trying to get a cannula in. Megan became hysterical and very upset. I would rather she had a GA its much kinder for her, and much kinder for me.

I will update again after the holiday with new pics, have a good holiday.

Lots of love Beth, Mick, Joe and Megan








Megan enjoying the clown sent to her by Lorna Rogers via Postpals

Friday, July 15, 2005 1630 GMT

Just a quickie, Megan is enjoying her new chair. Its taking a bit of getting used to but in time she will be roaring round. Joe loves it aswell but i dont know how much longer we can keep are ankles unharmed.

Megans tests at Great Ormond Street were cancelled. She has an infection and is on antibiotics. It will probably be another 3 months before we get another appointment.

I will do a proper update when i have a little more time.

Lots of love Beth, Mick, Joe and Megan












Megan enjoying her rainbow clown, given to her by Lorna Rogers, via post pals


Joe and Megan enjoying paints from Kate Dee, via post pals

Thursday, July 14, 2005 1600 GMT

just a quickie. Megan is adjusting to her new chair. The hot weather is not making it easy for her. Her tests at Great Ormond Street were cancelled, she has in infection and is taking antibiotics. I will update in the next day or two, when i have more time.

I have added a few photos in the album.

Love Beth

Tuesday, July 12, 2005 10.40 GMT

Hi All

Just a quickie to let you know Megan finally got her wheelchair this afternoon. I will do an update tomorrow and will try and get some photos loaded onto her page

Friday, July 1, 2005 13.30 GMT

Well the wheelchair saga is still ongoing> i phoned wheelchair services yesterday and was told that the parts that were needed hadnt even been ordered yet. We were told 3 weeks ago that they would be done that day. I am so angry, the staff were so unhelpfull. All they kept saying was "i do understand how youre feeling". I asked them if they had a disabled child and of course they didnt. How do they understand? Anyway cut a very long story short Megan will have to wait about another month. Its so unfair that youre child cant have the equipment they need.

Were of to GOSH on Monday for pre-assesment for Megans tests the following week. Im hoping that they can get bloods without making her too distressed. Last time she needed a cannula in, they tried for over an hour and still had no success. We will be admitted on Monday 11th for all her uro-dynamics tests to be done. She will go to theatre to have pubic lines inserted and then will have endless tests done the following day. Hopefully after this they can decide when and if we need to do intermitent catherterization (bad spelling). I would rather start now than have to wait when she is more aware of what is going on. Although i am not looking forward to it.

Megan is going to special needs playgroup 3 mornings a week. The staff are fantastic and can do all her excercises etc. She really enjoys herself and i have trouble persuading her we have to go home. Hopefully in September her hours will be increased. Next year she will be due to start nursery, so i have to start thinking where i would like her to go. I would like to keep her main stream rather than sending her to a special needs school. Her legs dont work, but her brain works over time. I will just need the advice of the OT and portage worker to choose the right nursery.

I have to go and get Joe from school now, so i will update after the next set of tests and hopefully i will be able to tell you all about her wheelchair. LOL.

Lots lof love Mick, Beth, Joe and Megan

Wednesday, June 15, 2005 09.15 GMT

Sorry its been a while since i updated. Not a great deal has been happening really. Megan was due to get her wheelchair last week. We went for the appointment and saw the chair. Its quite groovy really, and very cute being that it is so small. Megan was not impressed to begin with. I had to sit in a wheelchair and show her what to do. Then daddy had to show her what to do, she then thought she would quite like a go. That was it, she loved it. She quickly picked up what she had to do in order to move. She thought she was in a car and kept crashing into things on purpose. Anyway cut a long story short, we could not bring the chair home with us. For some reason the chair needs lots of modification and the cushion hadnt been ordered. We have waited 9 months for this and have now been told it will be another month. I made it known i wasnt happy, its like giving her a sweet and then taking it away.

We are back at Great Ormond Street 4th July to have pre-op assesment for the following week when she will have the pubic lines put in to check the proper function of her bladder. We will be going in on the 11th july and have to stay over night in the patients hotel. MOre tests will be done on July 12th. We are still waiting for an appointment with Carlos de Souza, this is Megans Neurologist. Her appointment was cancelled when she had chickenpox. I keep phoning but it is getting me nowhere.

We have also had a healer in to look at Megans back and legs. Its a friend of Megans cousin and were not having to pay, he wants to see what he can do for her. Im not sure if i believe in healing powers but at the end of the day, it wont do her any harm. I have to massage grated root ginger into her back. He will be coming back in a week or so.

Will update again soon, hopefully we will have Megans wheelchair by then and i can let you all know how she is gatting on.

Love Mick, Beth, Joe and Megan