Meggie D

30 November 2012

Story written 2012

Megan has severe uncontrolled epilepsy (she does not go more than 4 minutes without some sort of seizure activity), congenital hydrocephalus (shunt in situ), severe brain damage to the left side and partial to the right, cerebral palsy mainly to the left side, VSD, T.O.F., visual impairment, sensory processing disorder, and global development delay.

Meggie was diagnosed with hydrocephalus before birth. The chances of her surviving birth was less than 20% and we were told that should she survive her prognosis was very poor, that she would never be able to walk or talk, she would be blind and severely mentally impaired. Meggie was born at 33 weeks weighing 4lb, although the fluid in her head took a third of this! She had a cone shaped head and from day one was stared at by other parents / grandparents in N.I.C.U. At 24 hours old she was blue lighted to Great Ormond Street Hospital as it was discovered she needed urgent surgery to repair  tracheostomy fistula and again we were warned that she probably would not survive the journey, let alone the operation! However they didn’t reckon on Meggie’s strength, she not only survived that operation but also the operation a couple of days later to put a shunt into her head.

After a couple of weeks Meggie was transferred back to her local hospital, but unfortunately her condition kept worsening and several times she had to be resuscitated. At one point even a DNR was signed because it was felt her little body had had enough! But Meggie thought otherwise and, thanks to a doctor trying a new baby milk with added meds, Meggie turned a corner!

Over the next months she was regularly seen by different Doctors at GOSH as she is visually impaired, has a heart defect, spine defect, feeding problems. It was on the way home from one of these appointments that Meggie had her first seizure, quickly followed by several more. She was 8 months old! She was later diagnosed with cerebral palsy.

Meggie learnt to sit on her own at the age of 22 months. At the age of 4 she learnt to walk with a walking frame and at the age of 5 she took her first steps on her own!

She has always loved to sing and dance… first shuffling on her bottom and later holding onto the television! She even taught a ‘non verbal’ friend in school how to sign / sing JLS’ song ‘Everybody in Love’ and regularly entertains the staff and pupils at the special needs school she attends!

Meggie is 10 years old now. She totally loves JLS and says she is going to marry Aston! Unfortunately because her seizures are so bad we cannot take her to see JLS in concert or even to a book signing. She has so many seizures everyday and a recent telemetry study showed that the longest she goes without a seizure of some kind is 4 minutes. She has already ‘statused’ twice and we know we are on borrowed time as there is little that can be done as surgery would not work as she has so many ‘pockets’ of brain damage from the hydrocephalus etc.

Meggie is a very sociable little girl and loves chatting to people… even if she does ask exactly the same questions every time! Meggie loves playing ‘Doctors’, it is the only game she can really play (although she used to enjoy playing on her brothers DS), as she is only really age 2/3 years mentally.

Every one that meets Meggie never forgets her though, she is such a character and loved by so many! I think Meggie would be so happy to have ‘post pals’ as she loves people! But also for her family, mainly her 2 brothers, who miss so much of ‘normal life’ because of Meggie… yet they have never, ever complained. Last Saturday they were all ready to leave the house to go to town to watch Santa arrive and the Christmas lights switched on, but Meggie had a seizure in the doorway lasting 33 minutes. They just quietly took their coats off and got her bean bag for her to be comfortable in and sat with her.

Update 24th August 2016

Meggie is having a very ‘up and down’ time at the moment. She is not coping very well with school holidays and lots of family birthdays, so she has been having a lot more seizures every day! Because of this the family are having to have a very quiet holidays and are unable to go anywhere. This of course has been a bit unfair to Liam and Scarlett, but being the fantastic children that they are they have said they would rather stay at home and play with Meggie than to go on trips without her!
Meggie is still only age 2 – 4 yrs mentally and only plays ‘doctors’ or ‘vets’ with every doll and animal she has! She still loves monkeys, although she loves any cuddly toy! She loves listening to music … any music, and has the ability to learn and remember a song she has heard just once yet she cannot remember a person she met the day before or what she did! 3 years ago she was lucky enough to win a ‘meet and greet’ with her idols JLS, unfortunately the following day she had a huge seizure that wiped out her memory of meeting them. Then 2 days ago, after a particularly nasty and long seizure, she suddenly started telling everyone she meets that ‘she met JLS yesterday’!
Meggie loves receiving post from her Post Pals and sends her love to you all!
Liam is still a very loving, caring brother to Meggie and is about to start secondary school.

Scarlett is now 6yrs old and although she is very petite with blonde hair she is a Tomboy through and through! Like her brother loves Star Wars, Pocomon, lego and collecting Trump cards.
Like Meggie both Liam and Scarlett all love ‘making’ things and cooking together. Although Meggie is not very good at it, they both help her and let her think she has done it all herself!
They all love receiving their post and send a big ‘thank you’ to everyone!

Update 28th January 2016

Meggie has had a very up and down year with some very nasty, life-threatening seizures where we have thought we would lose her! She still has several ‘drop’ seizures every day, as well as her usual ones, but is always happy and smiling. Her mobility has worsened and she relies on her wheelchair a lot more. Although she is almost 14 yrs old, she still only has the mental age of 2 -3 yrs. She cannot write any more as she lost a lot of her skills and memory after some very bad seizures. But she does like to ‘draw’ pictures and colour (although it is more a patch of colour over a picture) and she enjoys it. She only plays ‘doctors’ and she loves snuggly cuddly toys, especially monkeys, she collects them! Meggie does not eat any sweets, only chocolate. Meggie loves all the cards, letters and parcels she receives from Post Pals and loves it when we read them to her. Thank you.

Marley is now 16 yrs old and, whilst he has had some lovely gifts over the past couple of years and is very grateful, we feel he should be removed from Post Pals.

Update 10th December 2014

We’re having a hard time right now, but I just wanted to say a big thank you to everyone for the post… it has made a huge difference to my babies. I’d also like to say a special thank you to a lovely lady called Regina and her niece… the Angel that arrived today was perfect and I needed her today. Thank you so much, she’s hanging in our room.

Update 13th October 2014

Hi everyone, the weather has caused chaos in my house and my two lung babies have been ill. Meggie has been up and down with seizures and sensory issues (never a good time of year for her) and my other children have also needed extra mum time. I’ve been ill too on top of it all. However, we have had some lovely post and it has really brightened things for my babies. So, a big, huge thank you to you all. Meggy has even taken part in a road safety exercise at school using her light up umbrella that Post Pals sent her! Thank you again everyone.

Update 1st June 2014

Meggie was admitted to hospital after she statused a couple of weeks ago. She was resuscitated but it has left her unable to walk now and barely able to move. She has lost a lot of her memory and is now ‘into’ Noddy, Dr Ranj and CBeebies… she sadly barely remembers JLS.

We are now living on a ‘one day at a time’ with Megs and also dealing with her older sister who has been diagnosed with a lifelong disability and is unfortunately unable to attend school and do her GCSE’s anymore. As a family we are truly suffering at the moment.

Update 22nd November 2013

My children, Meggie D, Scarlett, Liam and Marley, have had some lovely post from some special Post Pals. We are going through some things at the moment and I haven’t had time to personally thank you all, but you really have cheered my children up, so thank you.

Update 28th September 2013

Meggie is in hospital at the moment as she had a 38 hour ‘status seizure’. It was a bit touch and go but she is on the mend thank goodness! We are waiting for the results of CT scan / X-rays / shunt revision to see whether she will be transferred to GOSH or just her meds reviewed.

Thank you for everything sent to Meggie and her brothers and sisters, they make such a difference!

Update 30th March 2013

We had some news regarding Meggie’s health a couple of weeks ago from her GOSH neurologist that was quite upsetting. Her health is deteriorating and her seizures are worsening (she has had 6 in 2 hours this morning already). She is also losing a lot of skills she had developed, which is upsetting for her as well as us.

However, the next day she was sent a beautiful JLS necklace from a Post Pal! Thank you for the post sent to Meggie and her siblings, she has had some lovely mail which has always seemed to arrive when she’s having a particularly bad day.

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Lydia M

23 November 2012

Story written 2012

Lydia was diagnosed with Gorlin Syndrome when she was born. Lyd’s was poorly when she was little and had meningitis when she was just 7 weeks old and complications. She has spent her childhood in and out of hospital but has always been brave and our plan was to give her an amazing childhood to remember during the hospital stays she would have as an adult (which are almost guaranteed due to Gorlin Syndrome). However, Lydia got diagnosed with a Meduloblastoma (a cancerous brain tumor) this summer and is currently undergoing chemotherapy which is making her very poorly. Although we always knew she would be an ill grown up it has felt very unfair that she hasn’t had much time to be a child. The days where she is very sick or in pain are hard, but she plays on, cheering up all of the adults around her with her wonderful imagination and silly games. The tests she has to have are numerous and it is hard to explain how something that hurts can be good for you, but Lydia is patient and trusting and the little things seem to help her remember that life isn’t all tests and feeling ill! She has lots of trouble with her tummy, seems to get neutropenic very quickly (thank you to all the blood donors out there) and is obviously very sick from chemo. She can’t have radio therapy because of her Gorlins, so the chemo has a bigger job to do and is at a higher doses to help it do it.

Thank you so much for reading this and for thinking of Lydia. Lydia and I have sent post to other Pals since Lydia was little and it’s a great comfort to know that there are people out there who care enough to brighten their day, and now Lydia’s too, as she is more poorly than we ever imagined. Thank you so much to the Post Pals team too, you do an amazing job!

Update 29th May 2014

We are very sad to say Lydia passed away peacefully at home, with her Mum and Dad at her side, following her battle with a brain tumour.

Update 21st June 2013

With so many Children on Post Pals I think that now is a good time for Lydia to ‘move on’. She has had such fantastic post over the last 7/8 months and although we still have some hurdles and recovery to get through, I think it would be better that other children benefit from the lovely letters and post that gets sent. Lydia really enjoyed getting so many letters and presents and we will continue to send post, just as we did before Lydia got sick.

Thanks so much to everybody.

Update 10th May 2013

Lydia is home!!! Thank you so so much to everyone who has sent Lydia post this month. We are pleased to say that after 10 long weeks of isolation Lydia is back home We originally only had two days at home then back in with an infection, but have now been home for two weeks and Lydia is even managing to go to school for short spells. We won’t find out how successful this high dose has been until mid June when lydia has her MRIs, so for now we are hoping for the best and enjoying all being together as a family at home. Lydia’s blood levels are still very unpredictable but that should start to steady itself soon.

Thanks again for all the wonderful support Lydia had throughout the isolation period and I am slowly starting to work my way through the massive pile of thank you we need to write!

Update 20th April 2013

We are so pleased that Lydia is home, it has been a very long and tough (nearly) 10 weeks and Lydia has been mega brave the whole way through. There is still a way to go in recovery and home brings its own new challenges, but we are heading in the right direction!

Thanks to everyone who sends post.

Update 13th April 2013

Lydia is home for 24 hours! We will be back on the ward again tomorrow evening but she is still very excited to be allowed home.

Thanks again for all the lovely post, it has made a big difference. This high dose chemo and stem cell transplant was much harder than we expected but we are very proud of Lyds and the finish line is in sight!!

Update 24th February 2013

Lyds has gone down hill fairly rapidly over the last 48hrs and was only awake for about 2 hours today and even then most of that time she spent throwing up. She hasn’t managed to eat for 4 days now so they are starting TPN feeds tomorrow. She hasn’t opened post for a couple of days but is looking forward to doing it soon.

Update 5th February 2013

Lydia has now had enough stem cells harvested to move onto high dose chemotherapy, she will then have her stem cells returned to her (the same as a bone marrow transplant but the cells are Lydia’s own. This is often the hardest part of cancer treatment and Lydia will be in hospital for quite a while.

Update 9th January 2013

We’re HOME! The whole family is excited that cycle 5 is now finished and we are home. Lydia spent Christmas and New year on the ward and although the staff did an amazing job to make it special it still lacked that christmasy feeling, although Lydia made the best out of it. Unfortunately, the doctors weren’t able to harvest Lydia’s stem cells last month as there simply weren’t enough mobile ones despite all the hospitals efforts to shift them. She still however needs to have a stem cell transplant and high dose chemo as soon as possible so they have acquired some extra drug from GOSH that they haven’t used on Piam Brown before, but are hopeful it will help get some stem cells for harvest. The plan is to go in for harvest on the 26th January and start high dose the following week. This Friday (11th) Lydia has her first MRI since she started treatment which the whole family are nervous about, but after that we should have about two weeks to cram in some fun (and probably some school) before we start the next phase. Thank you, thank you, THANK YOU for all the amazing post Lydia has received, we are truly overwhelmed. I’m sorry I haven’t written many thank you letters but Lydia is really grateful and it lights up her face when her post arrives.

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Sapphire B

23 November 2012

Story written 2013

Sapphire was diagnosed with Cancer at the end of January 2011. A large tumour was found in her stomach and she had an operation to remove it in February. Unfortunately the tumour had grown back by March and Sapphire has so far had eight courses of chemotherapy and had to have another operation in September 2011.

She was in hospital pretty much since she was diagnosed, so has not been able to be with her friends and family much. The chemotherapy has taken its toll and she had lots of different infections to deal with. We were hoping that the operation will be a step towards recovery.

Before all of this started Sapphire was a very outdoors kind of girl, always very active, cycling, swimming, gymnastics, trampolining, skipping etc. The most frustrating thing for her is the lack of energy and not being able to do the things she loves. Through everything Sapphire has managed to stay positive and always has a smile for anyone.

Unfortunately the operation did not go as expected and the doctors discovered that Sapphire’s cancer is not responding to chemotherapy and at this time there is nothing more they can do for her. We are waiting for news of clinical trials that are appropriate for Sapphire’s cancer. In the meantime she is on a reduced dose of chemo on an ongoing basis to try to keep her as well as possible for as long as possible.

Update 29th January 2016

Sapphire is recovering well from transplant and it has been confirmed that she is in remission from the leukaemia. The next few months will tell us if this is permanent. She is spending a lot more time at home and is trying to get back into a normal routine, she has also started studying again for her exams later this year.

Update 6th July 2015

Sapphire had her stem cell transplant on 30th May and the last six weeks have been a real struggle for her. The treatment has been really intense and she is in a lot of pain. We are hoping to see improvement over the next few weeks.

Update 11th May 2015

Sapphire is being admitted for transplant on the 20th May and will be in for approximately 5-6 weeks if all goes well. She is quite nervous as it is going to be really tough.

Update 22nd February 2015

Sapphire has sadly returned to Post Pals as she has cancer again. This time she is battling Acute Myeloid Leukaemia caused by the chemotherapy she had in the past.

Sapphire started chemotherapy 2 days after her 16th birthday and will be in hospital for at least 6 weeks.

Update 29th July 2014

Hi, this is Sapphire. I wanted to write this update myself so I can share my amazing news with you all.

In October 2011 when the doctors told us that there is nothing more they could do for me I was a bit scared but I was determined that I would not let cancer beat me. I really don’t remember most of what I went through – my mum and dad tell me and show me pictures. I do know that it was hard and it hurt a lot and I do know that all of the letters, postcards, emails and gifts, made my journey so much easier and brought fun and laughter in to my life just when I needed them the most. I will never forget the kindness shown to me and I will always remember the strength these things brought me.

So here’s my news… I am officially in remission and cancer free hehehe! I can finally say that I KICKED CANCERS BUTT. Sadly this means it is time for me to move on and make way for someone else to feel the love and support shown to me by everyone involved with Post Pals. I will keep in touch on the Facebook page and send you updates from time to time.

So… my consultant says that I have to do what my parents say, knuckle down at school and pass my GCSE’s next year. I think it’s time for me to have some fun and be a normal teenager for a while first!

Thank you is not enough, words cannot say what I feel about Post Pals. There are so many individuals that have written to me and I will try to write to as many of you as I can. The biggest thank you goes to Vikki and Kate, two really amazing people.

That’s it for now, lots of love to you all, from Sapphire xxx

Update 1st March 2014

Sapphire has spent most of February in hospital. She has had a major operation to remove the tumours from her stomach and this will be followed up with radiotherapy. We are waiting for her operation follow up appointment to find out wether the operation was a success and how much radiotherapy she will need.

As you know, in October 2011 Sapphire’s cancer was deemed terminal and she was given 6 to 12 months. She fought hard and refused to let this get the better of her and as a result she has now been given his operation, which if successful, will leave her cancer free. Everyone involved in Sapphire’s care over the past three years are surprised that she got here. She has fought this head on, facing each day with a positive attitude and a very big smile. We are so proud of her and are thankful that we have our little girl back.

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Georgia C

09 November 2012

Story written 2012

Georgia was born a beautiful and healthy baby, but at 11 weeks old she started to have fits. I took Georgia to see our GP who said it was nothing. My instinct knew he was wrong. He refused to see us again and so I got an appointment through our health visitor later that same day. We were sent to the children’s ward, where we stayed for the next 4 months.

Georgia had West Syndrome which has now developed to Lennox Gastaut Syndrome. Georgia requires 24 hour care and has daily severe seizures. Georgia has lots of severe complex medical needs.

Georgia has a beautiful quality of life as we involve her in everything we do. She goes on holiday abroad with us every year, which takes a lot of planning, but it is well worth it.

Georgia requires use of a lot of equipment – bipap ventilator, feeding pump, suction machine, sats monitor, oxygen and also has a vagal nerve simulator, but she never ever complains. She is happy, strong and perfect to us, in every way.

Update 1st May 2016

Georgia has been having a rough time again with her seizures. Just wish we could get them under control. Everything else has stayed the same.

Update 16th November 2016

Georgia has been waiting for a date to go into hospital for major surgery on her hip. She had the date through for 7th November. All other things remain the same. A big massive thank you to everyone.

Update 12th October 2016

Georgia’s having such a tough time at the moment as her hip is out of socket causing horrendous pain. She’s waiting for major surgery. She’s having her leg in traction tomorrow and going to theatre on Friday for injections in her hip. She stopped breathing on Saturday while we were at home and it was terrifying.

Update 2nd October 2016

Georgia didn’t return to school after the big summer holidays as we moved house and unfortunately everything seemed to go wrong. We’ve spent the last 4 weeks staying at our local children’s hospice the Donna Louise trust. Georgia’s going back to school tomorrow, her first day since July, I think she will be very tired. All were very beautiful and Georgia loved them. I want to say an enormous thank you to all the lovely kind people who think of Georgia and send all the post and gifts thank you so much again

Update 5th September 2016

Georgia’s going to see the consultant on Thursday to see what will happen regarding her hip. She’s been have more seizures too. We should be moving house on Friday as our house is no longer suitable for Georgia’s needs.

Update 16th August 2016

Georgia’s just come out of hospital after having a procedure on her hip that was causing horrendous pain. Thank you so much to you all.

Update 4th May 2016

Hi, just a little update on Princess Georgia and to let you know that she got discharged from hospital at the end of March.  She was in intensive care for a long month and fought and fought to get better. Georgia had over 70 get well cards, so thank you so much to my special friends. She’s had around 2 each week since she’s been home. She really enjoys me reading them to her. The lovely nice light nights will be here soon and hopefully brighten our days. x

Update 4th March 2016

Georgia’s not been well since Sunday and is in Intensive care. Thank you so much for all the beautiful gifts and post and balloons.

Update 5th February 2016

Georgia is still having a bad time with her seizures, we are hoping at the next hospital appointment the doctors can do something to help. Georgia loves me reading her post to her and loves to help with opening her beautiful gifts. It puts a big massive smile on her face, thank you so much.

Update 21st January 2016

Georgia is not too good this week, she’s been off school since last week with increased seizures. Before this she was doing really well and really enjoying school and spending more time in her standing frame.

Update 2nd December 2015

Georgia should be going into hospital this month for Botox, but it’s been delayed until the New Year. She’s still having ups and downs with her fits, wish we had a magic wand. She has a few health problems going on with gynaecologically, but fingers crossed we can get them sorted. Georgia continues to smile and be happy which is so lovely to see. Hope you all have a wonderful Christmas!

Update 16th October 2015

Georgia has been very up and down for a while with her seizures, her hormones are playing a big part in the increase of them. But there’s not a lot that can be done, I was hoping something like the pill would have helped, but because she’s not mobile there’s a high risk of blood clots. She’s going into hospital before Christmas to have Botox in her arms and legs, I’m praying it has a good effect. Georgia is 16 in just over a week, we are so very proud of her.

Update 22nd July 2015

Georgia has now broken up from school for 7 weeks of summer holidays. We love the school holidays because we get to spend lots of time together. Georgia is currently on a little holiday to Centre Parcs. She’s having a fabulous time but has had a seizure every day. I’m hoping she has a better day tomorrow as she’s making fairy wings, a wand and a tiara. Afterwards we are going to make a hobbie pony. Georgia is also going on a lovely cruise over the holidays for 12 nights and she loves going on them.

Thanks so much to all our post pals for all the beautiful cards and gifts as it puts a big smile on Georgia’s face.

Update 10th June 2015

Georgia is continuing to chat away when she’s having her good days. Her teachers are so pleased and happy at how well Georgia is doing at school.

We would like to thank all of Georgia’s Pals for all of her cards, letters, postcards and gifts. Georgia loves me reading them all to her. You’re all so very kind and make Georgia’s day. Thank you so much.

Update 3rd December 2014

Georgia has been having another rough time with her seizures. The wonderful Daisy Garland dietician has adjusted Georgia’s ketogenic diet and we are keeping our fingers crossed that she will be having less seizures.

It really makes Georgia so sad when she’s fitting a lot, but the post and the beautiful cards and gifts really brighten her day up. Thank you so much.

Update 22nd October 2014

Georgia is having a bad time with her seizures at the moment. She will be 15 on Monday so we are praying the seizures will settle down before then.

Update 28th September 2014

Georgia was rushed into hospital last week from school as she stopped breathing. After a very scary phone call from school, I raced there. We went to hospital on a blue light. Georgia was allowed home later that day. She also went into hospital 4 weeks ago to have 9 teeth out and she did amazingly well and came home a few hours later.

Update 2nd August 2014

Georgia would like to say a massive thank you for all the cards and gifts, they are all so beautiful. Some have come from as far as America, Australia, China, and all over the UK. Thank you so much as they really brighten our day up.

Georgia is having a lovely time at the seaside in Wales. We have come with big brother, Dan, and our two dogs, Charlie and Freddie. The sun is shining and Georgia is really happy.

Update 12th June 2014

Georgia was recently rushed into hospital because of her seizures. She also had a nasty ear infection which was treated with antibiotics. She’s having yet more seizures, so I rang Manchester children’s hospital today and they want us to monitor Georgia’s ketone levels. They will ring us tomorrow to see if they need to alter the ketogenic diet.

Update 15th May 2014

Georgia is still on the ketogenic diet and is doing very well on it.

We took Georgia on a cruise to the Canary Islands and we all had a brilliant time. Georgia made some lovely friends. We carried Georgia along the beach so she could go into the sea, it was a special moment and she was smiling and vocalising with so much happiness.

Update 12th March 2014

Just before Christmas Georgia was in hospital in Manchester to trial the ketogenic diet as her seizures are very bad. We have seen positive results and Manchester have decided to continue with the ketogenic diet.

Thank you so much for all the beautiful cards, letters, postcards and gifts for Georgia. They always put a smile on Georgia’s face when I read them all to her. She loves touching and feeling all of her lovely gifts too. Georgia has also received beautiful post from as far as China, Miami, and Canada, which is amazing. Thanks to all of you lovely people who think of Georgia. It really does mean so much.

Update 27th September 2013

Thank you to everyone for Georgia’s post and lovely gifts. Georgia is not very well at the moment and was in hospital last weekend. It really cheers us up reading all the beautiful cards to Georgia. Thank you again.

Update 13th February 2013

Georgia has been off school for the past 2 weeks as she hasn’t been very well and is currently on antibiotics.

Thank you for all the lovely cards, letters and gifts, that Georgia has received. We are so very grateful for all your support.

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