C/O 19 Allder Way
South Croydon
Surrey
CR2 6JZ
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Megan H's Parents/Guardians

Elizabeth and Mick

Megan H's Siblings

Joe (31/08/00) loves Scooby Doo, Power Rangers and monsters. Stickers, sticker books, reading books. Dr Who, TMNT, anything to do with Harry Potter! Playing on his Nintendo DS!

Megan H's Interests

Doing puzzles, playing with paints etc, any messy play and looking at colourful books. Dolls and dressing up things. Cinderella. Stickers and sticker books. Disney princess. Minnie Mouse. Hairbands. Make up. Anything girly. Playing on the Nintendo DS!

Megan H's Favourite Colour

Pink

Is Megan H able to read?

No

Is Megan H able to use hands?

Yes

Is Megan H visually/hearing impaired?

No

Does Megan H suffer from any developmental delay?

No

Favourite type of post?

Postcards

Story written 2005

Megan was diagnosed with Neuroblastoma stage 4 in September 03, she was 6 months old. Megan’s tumour was in her chest compromising her breathing. Megan was transferred to London’s Great Ormond Street for treatment. The tumour in Megan’s chest was crushing all of her internal organs, making her unable to breathe on her own. She had to spend 2 weeks on a ventilator.

Eventually with chemotherapy the tumour was starting to shrink and Megan could be taken off the ventilator. She then had to have Chemotherapy to try and shrink the tumour in her chest and clear her bones, bone marrow and other organs of the cancer cells. This was a very rough time on the whole family, Joe had to go and live with my mum and dad for seven weeks.

Following chemotherapy test revealed that the tumour had shrunk and that the bones were nearly clear. Two more rounds of chemo would be done and then Megan would have surgery to remove the tumour. Surgery was scheduled for March the 26th 04, before surgery Megan had to have an angiogram and there was concern that a main vessel was running through the tumour. The angiogram showed that aorta was running straight through the middle. This would make surgery more difficult. Megan had surgery on March 26th, the operation was very successful, doctors managed to remove all the tumour apart from the small amount in her spine. Surgery was a complete success and Megan didn’t need any more treatment.

Megan is currently NED which is the equivalent of remission. Unfortunately due to spinal cord compression Megan has been left paraplegic has spinal scoliosis, and neuropathic bladder and bowel. We are just waiting for a wheelchair which should make life a lot easier for her and prevent her from getting so frustrated. She goes to a special needs nursery which she really enjoys.

Megan has a 20-30% chance of the Neuroblastoma coming back and she has to have MRI’s under general anaesthetic every 4 months.

She is a very happy little girl who enjoys life, but does get frustrated as she can’t do more.

Update 16th April 2008

Megan has had a very busy month. She celebrated her 5th birthday on March 12th, a day we never thought we would see. We had a party for her on the Sunday with family. We got her a pink fairy castle cake which she loved. As usual she was spoilt rotten and couldn’t have asked for more. She received some lovely presents via post pals and loads of stickers. Megan can never have too many stickers; the wheels on her wheelchair are full of princess ones.

We have had appointments with wheelchair services to try and find some suitable support for her chair that doesn’t restrict her movement too much. On Friday we will be going back to have a cast done of her back and make some sort of plastic support. We have an appointment at Stanmore Royal National Orthopaedic Hospital to see the spinal injuries consultant. We go there every 6 months and they’re excellent. We have also seen a rep about getting Megan a wheelabout, which is a sort of standing up wheelchair that she can self propel. We’ve tried 2 different ones and she took to it straight away. This would give her more independence and enable her to access so much more. We’re hoping to get some kind of charity funding, i won’t say too much in case it doesn’t work out, but will update you when i know more. 

We’ve had a busy month with physio sessions etc as usual. Megan has her next MRI and appointment with the oncologist in May, so fingers crossed the tumour hasn’t changes size or shape.

A big thank you to Maria Carney for the lovely things sent for Megan’s birthday. Also a huge thank you to Sally, Owen, Beth and Ellie. They sent Megan some lovely bits for her birthday and a letter from Ellie. Ellie is the same age as Megan and they sent some pictures too. Megan is going to send Ellie a lovely picture to say thank you. The picture of Ellie and her little sister Beth is in Megan’s photo album. This really put a smile on Megan’s face.

I can’t praise post pals enough. Since Megan’s problems all began as a result of Neuroblastoma, post pals have been great. They have supported us through lots of hospital admissions and operations. Joe always feels a little left out as Megan’s needs always have to be a priority. When posty arrives for him his smile is priceless. He spends a lot of time away from home and we miss him dreadfully. He loves receiving cards and letters etc when Megan’s having treatment or surgery. Thank you for making this possible.

Update 4th March 2008

Megan has had a fairly good month health wise. The infection in her back is healing well although there is still one patch that’s a bit puffy. The spasms in Megan’s legs are quite bad now; i need to make an appointment to review her medication. We have to strap her feet down in the chair so that one of them doesn’t get trapped in the wheels. She’s been recast for her night splints so hopefully this will help a little. We have an appointment with a rep to show us some new equipment that should help Megan. We are looking at a wheelabout which is a bit like a wheelchair but she would be standing. We will also try a few other things to see which suits her best. We have a date for her next operation - July 25th. Thankfully it’s the school holidays so she won’t miss any school. We are going to New Milton on 12th July so at least she gets a holiday before having MORE surgery.

Megan is doing great at school and has lots of friends. Her carer has been sick for the last 2 days so the school has had to muddle through on their own. We’re still going up to do the catheter, but the teacher goes on the training course next week, so hopefully we won’t need to go for much longer. 

Next Wednesday will be Megan’s 5th birthday. I can’t believe where the time goes. Another milestone in her life. Doctors said she wouldn’t be here and look how well she’s doing!

Thanks for posty that is still being sent to Megan and Joe. Megan wheels herself to the door everyday to see if there’s anything for her.

Update 29th January 2008

Megan is doing ok. Following her spinal surgery in December, Megan caught an infection in her wound. She was put on a strong course of antibiotics and now seems fine. We saw the spinal team at GOSH on Friday and they are happy with her progress. She can now start her physio properly again. She has been unable to do so much as she has been unwell but all systems are go now. We have a date for her next lengthening in July. We are away 12th July for a week and then she goes in for surgery July 25th. I’m glad as this means it will be done in the summer holidays so she won’t miss school.

Megan is doing great at school and has loads of friends. It’s tough without all the adaptations but we’ll get there eventually. We go back to GOSH for an MRI in May and to see the oncologist.

Thanks for the posty that you continue to send to Joe and Megan, it really helps to brighten their lives. A big thank you for the lovely drawing books and pens/pencils sent to Megan. She loves them.

Update 3rd January 2008

Megan had a tough month in December. She went in to have her spinal rods lengthened and an x-ray showed the rods had snapped. I phoned the surgeon and said i think the rods have snapped, of course they answered me as if i knew nothing. Anyway they phoned me back and said well spotted, they’ve snapped. She went in to have the old rods removed and a new one put in. The newer rods are a lot more heavy duty and hopefully will be ok for a few years at least. We asked if we’d done anything wrong and they said it just happens sometimes, Megan is just very unlucky. Her recovery was a lot slower this time and she was in a lot of pain. We were told that surgery will be worse as she gets older. Megan is now fed up with all her surgery and hospital appointments. She also wants to know why everything has happened to her. I’m unsure how to answer her, so she is having some counselling at school. Alison is really helping her through things. Unfortunately Megan is always going to be in hospital having procedures done.

I want to wish everyone a happy new year and thank you to everyone that continues to put a smile on Joe and Megan’s face. Post Pals has made such a difference to Joe and Megan’s lives. Everyday after school, the first thing they ask me is "have we got any post today mum?"  

A huge thank you to Joe and Megan’s Christmas elves this year. They were thrilled with their gifts. Megan was in hospital just before Christmas for spinal surgery, so all the cards and gifts really cheered her up at a tough time.

Update 9th December 2007

We went to GOSH on Tuesday to have the pre-op x-rays ready for surgery on Wednesday. Unfortunately, Megan’s x-rays showed that the spinal rod had snapped. Only a 6% chance of this happening, but yes, my girl did it.

Anyway, she has had to have a new rod put in so has been cut from her neck down to bottom. She is in a lot of pain and recovery is very slow this time. I can’t believe this has happened just before Christmas, not sure how long we will be in for. Hopefully out by the end of next week.

A huge thank you for the cards and presents that Megan has received. They really have helped her to smile these past few days, although i have to say she’s probably only managed 1 smile. Also a huge thank you for the parcels that Joe received. He got 2 boxes with Dr who and Power rangers, he loved them. When we’re out of hospital i will forward the photos i have taken. 

Thanks again, you really are doing a great job. Not only for the sick kids but their siblings. Joe has felt left out this week and been craving attention so posty really helps him.

Update 30th November 2007

Megan has had a few bad weeks. Her scoliosis has progressed and is causing her pain. We saw the spinal team who did an emergency CT scan as they thought the rod at the top of the spine may have dislodged. The scan shows the rod has indeed dislodged but there is now concern that the screw at the top has come out causing her the discomfort. Anyway, this will be sorted next week as we go into GOSH on Wednesday for more spinal surgery. Hopefully things will improve after this. We will be in hospital for about a week; I’m dreading it and find it difficult to see Megan in such pain.

On a better note, things are going great for Megan at school. We still don’t have all the adaptations in place yet, but we’re getting there. Megan is looking forward to all her Christmas activities so i just hope she will be well enough to be there. 

A huge thank you to the lady that sent Megan the colouring book and pens/pencils. She has had loads of fun and i have lots of pictures on my fridge door now. Sorry i can’t name you in person, but Megan got excited and just ripped your details, sorry.

Well i want to wish you all a merry Christmas and hope you get everything you wish for. If anyone would like to send Megan any posty when she is in hospital please make it to: Megan H, c/o Sky ward, Great Ormond Street hospital, Great Ormond Street, London, WC1N 3JH. Thanks, love Beth xxx

Update 27th November 2007

Hope you’re all well. I just wanted to let you know that Megan will be going into GOSH next week for more spinal surgery. Firstly Mr Tucker will lengthen the rods and then they need to repair the dislodged screw at the top of her spine. The progression is very noticeable now and is causing her a great deal of discomfort. She is quite anxious about going back to hospital and really doesn’t want to go. I’ve tried explaining she will be fine but she remembers the pain she was in before. I know it’s going to get worse over the years rather than easier.

Update 30th October 2007

Megan has had a very busy month with school and appointments. Her scoliosis has got worse and she has been in a lot of pain. The rods have dislodged in the top of her back and she needs surgery to sort that as well as making them longer. So she will have a few extra days in hospital and surgery is booked for 5th December. Due to the pain in her back she has lost a lot of weight in the last 2 weeks as she has not been eating. Her appetite the last few days seems to have improved slightly; hopefully we can begin to get back to our school routine. Megan is really enjoying school and has her own care worker Jackie. Jackie and Megan have really hit it off over the last month, Megan really trusts her which is great.

Thanks for the letters/cards that Joe and Megan have received this month, they both still run to the postman to see what he has brought.

Update 30th August 2007

Megan is doing ok at the moment. She’s having increasing pain in her back and arm, indicating the need for more surgery. She isn’t sleeping as she can’t get comfortable or move herself in bed. We are seeing the spinal team on 10th September so i will discuss these issues with them.

Megan is due to start school on September 17th. This is a huge step for us all and something we never thought we would see. She is going to a mainstream school and will have full time support. I will update you all with how she does.

Joe celebrates his 7th birthday tomorrow; i can’t believe my baby is growing up. 

Well until next time, thanks for the posty Joe and Megan receive. Huge thanks to SOLAK for the gorgeous quilt that was sent to Megan. She loves it and wants it with her all the time. They can’t wait to see the postman everyday to see if there is anything for them, so thank you to you all once again.

Update 6th August 2007

Joe and Megan broke up from school 1 week early as we were going to stay in The Thomas Ball lodge in New Milton. We had a fantastic time and a well needed break. Joe and Megan spent every evening dancing with Sammy seahorse and friends. This is the 3rd year we’ve been there and we hope to be going next year.

 

On July 7th it was my cousins wedding. Joe and Megan were to be pageboy and bridesmaid. The weather was lovely and the kids did a great job. Megan pushed herself down the aisle and all you could hear were the spokey dokies on her wheels going round. I have to say it was quite an emotional day seeing Megan; 4 years ago we were told she wouldn’t be here and look at her now.

 

Health wise Megan’s not doing badly. She has been getting some pain in her right shoulder again if she’s laid on it too long or used it too much. The local pediatrician started her on an epilepsy medication for neuropathic pain 6 months ago, and she’s been great. I’m wondering if the dose needs to be slightly increased, we see the pediatrician in a few weeks so i will discuss this with her. It is very visible now that Megan has grown since her surgery in May, we see the spinal team in September and should find out when the next surgery is, I’m sure it will be at Christmas.

 

Joe has got his first wobbly tooth; he discovered it last night and is very excited about how much the tooth fairy will leave him! It feels like he is really growing up now. Joe will be celebrating his 7th birthday on 31st August, thanks to everyone who takes the time to send something.

Update 4th June 2007

Megan’s surgery on May 9th went well. The surgeons managed to lengthen the rods by 2cm's which is a great success. Following surgery Megan was in a lot of pain for a few days but she’s now back to her usual self and back to school. She will have to go in for more spinal surgery just before Christmas. Her latest MRI showed no evidence of disease which is fantastic, she will have another MRI in a year but we will go and see the oncologist in 6 months.

Things on the school front are improving. I have a meeting with the LEA today for a mediation meeting. The LEA have agreed to half fund a hygiene room at Joe’s school if the school pay the other. This shouldn’t be a problem and we’re just waiting for the rubber stamp of approval. So after fighting for 2 years, i think we have finally got there. I will let you all know. 

Megan is looking forward to being a bridesmaid for my cousin Emily next month and we’re just sorting out hair and everything. Megan keeps telling everyone she is going to be a princess. Well until next time, thanks for sending Joe and Megan things through the post and I’m not sure who to thank but we received 4 parcels all from John Lewis when Megan was in hospital. Two gifts for Megan and one each for Joe and me. So whoever you are, thank you very much.

Update 1st May 2007

Megan is doing ok at the moment. We have had lots of appointments lately. Megan had her MRI scan done on 17th April, we saw the consultant for the results and they all came back clear. We will see her again in 6 months and then have 1 more MRI done in a year’s time. She feels the chance of relapse is quite small now, although never say never.

Megan goes in for more spinal surgery on May 9th. She has grown so much that she is quite curved again; she is definitely ready for the rods to be lengthened. Hopefully she will only be in hospital for 3-4 days.

We’re still fighting with the local council with regards to Megan’s reception class in September. We have still been refused a place at Joes school so i am going to a tribunal in June, fingers crossed. 

Thanks for the cards Megan has received, it really does put a smile on her face. I will update when we get out the hospital.

Update 3rd February 2007

Megan saw the spinal team last Monday and she will be having an MRI of her neck done when she has the oncology checks done. Her pain is much better now, but she still complains from time to time. She will be having surgery again in May to lengthen the rods. Time goes so quick, were only just sorting out the problems from the last surgery.

On a better note Megan got her new chair. She is now a very independent little lady with attitude. I can’t believe how different she is since getting it. Well i suppose she is 4 in March. I still think of her as my baby. Anyway thanks again for all you do, you’re all great.

Update 11th January 2007

Results were good. There is no sign of active Neuroblastoma. The tumour will always remain there as it cant be removed. She will be scanned again in April and see how we go from there. We see the spinal team on Monday to discuss the pain issues.

Update 3rd January 2007

Unfortunately Megan was quite poorly in the lead up to Christmas. She was running an extremely high temperature and was generally unwell. We were admitted to Great Ormond Street. The spinal surgeons thought maybe her spinal rods were infected. She was scheduled for an MRI. The doctors started her on iv antibiotics and her temp started to come down and she felt a little better. The MRI showed no fluid or puss around the rods which is great. However they noticed that the tumour in her spine had grown a little. We had to see the oncologist to discuss things. They tested some urine for VMA which came back normal. This can be an indication of Neuroblastoma, although not always. Her oncologist doesn’t feel that the Neuroblastoma has flared up again but she ordered an MIBG scan to be done. This will tell us for sure if anything has returned. Her scan will be done on January 3rd, please keep everything crossed for us.

We managed to make it home for Christmas. They let us out Christmas Eve, the best Christmas present ever. We had a fantastic Christmas and the kids were spoilt rotten. Thank you to everyone that sent gifts for the kids. I’m sorry i can’t mention everyone but as we were in hospital my neighbours were getting my post and sorting it for me. Unfortunately some tags went astray. A huge thank you to everyone that sent gifts to Joe and Megan for Christmas though.  An extra special thank you to Megan’s Christmas elf Beanie. Megan loved receiving her big box of gifts. I wanted to thank you personally but mislaid your email address. Thank you to everyone that sent cards for Joe and Megan. They loved receiving cards from the reindeers and ran to the post every morning. 

Wishing you all a very happy New Year and thank you for your continued support in keeping a smile on sick kids faces.

Update 28th December 2006

Megan was discharged from GOSH on Christmas Eve, so at least we managed to make it home for Christmas. She’s doing well at the moment although were still waiting for some scans to be done. We were told last Wednesday that Megan’s tumour in her spine has got bigger. The oncologists don’t seem too concerned at the moment, although were not quite as relaxed as they are. She is scheduled to have an MIBG scan on 4th January. Fingers crossed everything will be well.

As far as her being poorly goes they are still not sure what the problem was. Blood tests show that she has a severe infection somewhere but no-one seems to know where. The MRI showed no signs of fluid or puss to the spinal rods. They say that maybe she has a deep seeded infection. She went to theatre last week and had a pic line put in. She is very difficult to get a cannula in, and this has also made her terrified of doctors/nurses coming near her now. Anyway she is on oral antibiotics until January 15th, we will see the spinal team on that day and then she will have to remain on oral antibiotics for a further 3 months. 

I want to thank you for your hard work over the last year. It has really put a great big smile on Megan’s face to receive posty, also Joe has been very lucky to receive a few bits. He has been unintentionally left out lately and this makes him feel like a special boy, so thanks again.

I will let you know when we have the MIBG results on 11th January. We’re praying for no Neuroblastoma cells to show up and will hopefully find out why the tumour is growing.

Update 30th November 2006

Megan is continuing to do well following her recent spinal surgery. We saw the surgeon on 24th November and they don’t want to see her until May, yey! We have had an ongoing battle with wheelchair services. She needs a new wheelchair and it cost over £1000. Well a few hissy fits saying i couldn’t cope without a new chair seemed to help. Her new chair should arrive in 6-8 weeks. The council has refused to adapt Joe’s school ready for Megan to start there in September. It will cost over £200,000 and i know it’s a lot but i feel it’s important for her to be with Joe and why should Joe move? I’m going to fight to the bitter end, and if need be take the local council to tribunal. I feel as if she’s being discriminated against because she has Neuroblastoma.

Well we’re all prepared for Christmas. I’ve nearly finished my shopping and the tree and decorations went up at the weekend. I know I’m early but Joe and Megan hassled me for hours. Megan is so excited this year; she’ll be 4 in March so knows more of what’s going on. She keeps telling me she wants Minnie Mouse and Cinderella for Christmas so she’s been quite easy to please. Joe just wants Dr Who, pj's, pants, socks, so again Christmas is quite easy for me this year. 

We have Megan’s next MRI scan on January 2nd, and results on 11th. Scan time is so hard especially as time goes on. We thought it would get easier but NO. Let’s just hope that nasty tumour is still not growing.

Well have a great Christmas one and all! Thank you to everyone who sends posty to Joe and Megan. Julie and Allan Barrett, Kate Dee, Laura and Chris for the doll, she loves it. A huge thank you to Megan R for her lovely gift to Megan. Megan loves receiving posty and really enjoyed the stamper and especially the Cinderella notebook and pen. She keeps telling everyone she has a diary now.

Update 31st October 2006

Megan is recovering really well following her spinal surgery. Her scar is healing really well and the stitches have nearly all dissolved. We will see the spinal surgeon for a follow up on November 24th. She will return to nursery on the 27th November all being well. We are trying to organize a new wheelchair for Megan, but of course the problem will be the funding. We’ve just received the letter regarding Megan’s next MRI scan. It has been booked for January 2nd; hopefully the hangover will be gone by then! ;-) We will get the results on 11th January. The longer she has been in the clear the slimmer the chances of it coming back.

Well we’re all looking forward to Christmas. Joe only wants Dr Who and Megan wants everything in sight. The year goes by so quickly; i can’t believe it’s nearly Christmas again. It will be the 2nd Christmas without my dad. 

I want to say thanks to everyone that continues to send posty to Joe and Megan. I can’t remember everyone by name but you really make a difference to Joe and Megan.

Update 4th October 2006

Megan’s operation last week was cancelled. We were all prepared to go in and then with 24 hours to go they cancelled. No explanation - i was just told something came up. Anyway, Megan will be now going in to hospital tomorrow for surgery on Friday. We’re not looking forward to this operation, but she is in a lot of pain. Although initially she will be in a lot of pain, she should feel much better after.

Megan has now started at main stream nursery. She is really enjoying it, although the nursery have realised how much extra support is needed. We are now trying to start the statutory statement to get her extra support at school. Her teachers are really supportive to all her needs. 

Our trip to EuroDisney was great. We can’t thank the children’s magical mystery tour enough. This organisation has been taking sick kids to EuroDisney for 13 years now. It’s quite an experience to see over 100 black cabs, police bikes, ambulances, AA and convoy vehicles all following each other down the motorway. The police bikes were stopping everyone at red lights and the motorway junctions so the convoy wasn’t broken. It was a very breathtaking experience. We all had a great time but were very tired when we came home. Our cab driver Mick stayed with us for the whole trip and helped us around the park.

Megan and Joe would like to say a big thank you to everyone that has sent posty this month. Big thanks to Kate Dee and Julie and Alan Barrett. I can’t thank everyone but you know who you are.

Update 12th August 2006

We just wanted to let you know that Megan will be having spinal surgery on Friday 29th September. We will be admitted on 28th. She will be in hospital for about 7-10 days. This will be 3 years to the day since she was diagnosed with Neuroblastoma. We are of course anxious about this but know it needs to be done.

Update 27th July 2006

Megan is having quite a lot of pain at the moment with her spine. I’m sure this hot weather doesn’t help. She’s taking more codeine to try and ease the pain. We go for pre-op on August 11th, so we should know when she will be having surgery. Although I’m 100% that it will be September.

We have just returned from New Milton where we spent a week at the Thomas Ball holiday chalet. We had a great time and Joe and Megan enjoyed singing and dancing with Sammy Seahorse. 

Megan will be starting nursery in September. We’re still battling to find a suitable school for reception next year. Why can’t people see past the wheelchair and realise that Megan is a normal little girl? Things are very stressed at the moment.

Well i hope everyone is having a good summer. Joe will be celebrating his 6th birthday on August 31st. We’re going to try and make it really special after last year. My dad’s funeral was the day before so we didn’t feel like celebrating, so we must make it special this year.

A big thank you once again to Julie and Alan Barratt. Joe and Megan really look forward to racing for the postman.

Update 28th June 2006

Megan is doing ok at the moment. She is still having trouble with the back pain, due to the scoliosis. She will have her pre-op appointment in August, then all systems go for surgery in September. I’m dreading this but it needs to be done.

We’ve just been reviewed by the uro-dynamics team. Megan is still wet in between catheters, so they have decided to increase her medication and given her bigger catheters. If the medicine doesn’t work then we will have to increase the catheters to every 3 hours.

Nothing else on the health front really. I’m battling with the education department at the moment to find suitable schooling. I didn’t realise how stressful this would be. Every school mentions inclusion, but that’s as far as it goes. I will keep you all updated.

We’re going on holiday on the 8th July. We’re staying in New Milton at the Thomas Ball Charity holiday home. We are looking forward to getting away, and its lovely there.

Thank you to everyone who continues to send posty to Joe and Megan, they get very excited when the postman arrives. A big thank you to Julie Barrett, who continues to send lovely little things for Megan.

Update 19th May 2006

Just to let you all know that Megan’s scans have come back all clear. There is no sign of any disease. A great weight has been lifted. She will have another scan in November.

Update 15th May 2006

Megan is doing great at the moment, although she seems to be having a lot of pain due to the scoliosis. We have seen the GP and he has written to the surgeon regarding her surgery. The local paediatrician has also prescribed some Codeine for the pain. Hopefully this will help.

Megan had her MRI scans last week to check that the cancer hasn’t returned. We will get the results on May 18th. The catheterisation is working well and Megan doesn’t seem bothered by it at all.

On a great note Megan has been asked to go on the magical taxi tour. This is where 100 black cabs take sick kids and their families on a magical tour. We will be going to Euro Disney on September 15th. This is a massive event that gets a lot of publicity worldwide. Last year the cabs were in a convoy on the motorway for 3 miles. I’m sure it makes great viewing and it is something for us all to look forward to.

Megan’s lift will be fitted this week; this will make life so much easier for me and Mick, and give Megan a lot more independence. She needs to be doing things on her own as she does get very frustrated having to rely on everyone else.

Anyway until next time i want to say a continued thank you to everyone who sends posty to Joe and Megan, it really makes their day. I would like also like to say a great big thank you to Julie Barrett. She sends some lovely posty to Joe and Megan; also her parents sent a lovely huge doll to Megan. She has named her Emily and insists on taking her to bed with her every night.

Update 22nd March 2006

Just wanted to let you know how Megan’s is doing. We now have to catheterize her. We have spent 2 days at Great Ormond Street for training. At first Megan wasn’t too keen, but she has adapted really well to her new routine.

She will be having her spinal surgery in September. Her spine has now progressed to 60 degree. The surgeon wants to insert some spinal growth rods. She will then have to have the rods lengthened every 6-12 months as she grows. She will then have her spine fused when she is a teenager. I’m not looking forward to this but it has to be done.

I want to say a big thank you to everyone that sent gifts and cards for Megan’s birthday. I must admit i have lost count of the number of cards she received.  I would also like to say thank you to everyone that sent a little something for Joe.  It meant a lot to him while Megan was being spoilt rotten.  She had a great day with loads of pressies and a small party for family. Look forward to updating you all soon.

Update 4th March 2006

Megan is doing well at the moment. She had a review at Stanmore earlier this month. They seem pleased with her progress. They did talk about botox injections in her ankles because she has lots of spasms.

Megan was seen at Great Ormond Street yesterday by the spinal surgeon. Her 40 degree scoliosis has now progressed to 60 degree's in just 6 months. He has decided he wants to get her in for surgery. They want to put in spinal growth rods that will grow with her. This means she will need surgery every 6-12 months to lengthen the rod, as she grows. There is a 6 month wait, but I’m sure that will arrive really quickly.

Megan will be celebrating her 3rd birthday on Sunday 12th March. This is such a big milestone considering she was so poorly 2 1/2 years ago. Not much planned really, just lots of presents and cake.

A big thank you to everyone who continues to send cards and gifts. It really means a lot to Joe and Megan.

Update 20th January 2006

Just wanted to let you know Megan has just had her MRI and the results came back all clear today. The remaining tumour is not active and hasn’t grown at all.  This is great news as we were sure she might have relapsed as she has been so unwell lately. Catheter training next week and back to see the spinal surgeon in March. I’m sure he’s going to want to do surgery.

Update 30th December 2005

Megan is doing ok at the moment apart from suffering with a really bad cough and cold that she seems to have had for ages. She is finally on antibiotics. Euro Disney was great; we met loads of the characters and had a great time. Thank you to The Thomas Ball Charity for making the trip possible. We had a really good Christmas, although it was strange my dad not being with us. Megan is due for her next MRI scan on January 11th, we will get results on the 19th. Then we are back to Great Ormond Street on January 23rd and 24th for catheter training, something I’m not looking forward to but has to be done.

I would like to say a great big thank you to Sally Barrett who was their Christmas Elf this year. We received a HUGE box for both the children. The children loved opening all the presents from the Christmas Elves. Also a great big thank you to everyone else that sent them gifts.

I wish everyone a great new year and hope that 2006 is a better year for us all.

Update 6th December 2005

Just to let you know we are going to Euro Disney on Thursday. This trip has been organised through The Thomas Ball Charity. Three magical days with Mickey, Minnie and friends. Megan is doing great, but had a slight ear infection last week. Will update when we return.

Update 23rd November 2005

Megan is doing really well at the moment. She seems to have got over the scarlet fever really well. Great Ormond Street have decided that we will start catheterizing Megan. We go for training in this procedure on January 11th.

Friday 25th November we are going to stay in New Milton at TJ's. This is the new lodge recently purchased through the Thomas Ball charity. We went in the summer but had to return early due to my dad being so unwell. Anyway the charity have offered it to us again for the weekend. We are really looking forward to it.

Nothing else to report really. We have no hospital appointments until January now, yey. This will be the big one though. It will be her MRI to check the remaining tumour in her spine hasn’t changed at all. We hate scan time, its a really scary time.

I look forward to the next update, i can let you know about the break were having.

Update 7th October 2005

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.

Update 3rd October 2005

I would like to say a big thank you to anyone who sent posty to Joe and Megan. My dad lost a short battle with cancer in August and posty has really helped them both. 

Megan has recently had her 4 monthly MRI scans. They all came back clear, which means Megan is till NED. She also had some bladder scans done which so that she does have some bladder control. We have to wait to meet with her urologist but hopefully this means we wont have to catherterise just yet.

On a downside, Megan's scoliosis has progressed. The spinal surgeon will see her in 6 months and if there is more progression she will have surgery, to have a spinal growth rod.

Again a big thank you to everyone who sends posty, it really brightens their day.

Update 17th September 2005

The good news is that Megans scans all came back clear. It has been such a tough few months we needed some good news.

Also her bladder assesments show she has slight bladder control which is great. We have to wait for an appointment with the urologist but we had good news all round. 

Update 29th June 2005

What a fab thing you do. Joe and Megan enjoy getting parcels/envelopes for them, it makes them feel special. I want to say thank you to Kate, Sue and Lorna for the lovely gifts.

Megan is doing well. She finally got her wheelchair, its only took 10 months! She’s learning really quickly.

Her tests at Great Ormond Street were cancelled as she had an infection. These were bladder tests and are very important, so I have to change for another appointment.

Now it’s the school holidays, we are all looking forward to a holiday in August. We are going to Hampshire for a week and can’t wait. The holiday has been donated by the Thomas ball charity. We are so grateful for their generosity. I can’t wait to let you know all about it.

No more hospital appointments for 4 weeks (that’s a first!). The next MRI is scheduled for September, so that will be a tough time.

We are looking forward to Joe’s birthday at the end of the month. We have booked a party at the local ball park for him and his school friends, they both really enjoy going there.

Update 22nd June 2005

We are back at Great Ormond Street 4th July to have pre-op assessment 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 Megan's Neurologist. Her appointment was cancelled when she had chickenpox.