Story written 2010

Enya had been under the weather for a long time (getting on for over a year). Her weakness and general well-being became worse over time. We were back and forth to the hospital with our concerns but never seemed to get any answers. Eventually she ended up in hospital with pneumonia; this seemed to be where the journey took a turn. Enya was treated with antibiotics but left hospital no better. She seemed in so much pain and was unable to walk or even be touched.

One evening whilst getting Enya ready for bed we noticed a lump that had appeared out of nowhere on her sternum. That afternoon we were rushed in for an ultrasound and the next day she was at another hospital for a biopsy. It all seemed to happen so quickly. The results of the biopsy a week later revealed that she had a rare haematological condition called Langerhans Cell Histiocytisis. At last we had some answers to why she had been so unwell but still we were very unaware of what the future held for Enya.

After many scans we found that Enya had multifocal bone LCH, and had many lesions on the skull, neck and spine. Enya is now undergoing an intensive course of chemotherapy and steroid treatment to suppress the condition.

We hope in the future she will regain quality of life and be allowed to be free from disease.

Update 31st December 2010

Enya has had a tough year and all the post she has received has certainly made her smile and helped with the days she wasn’t feeling her best. Post Pals brightened her day so thank you everyone so much.

Enya has currently finished her chemo treatment and although she may not be completely out of the woods, her future is very much more positive. Can I now request that post is sent to those who need a bit more TLC.

Thank you all again. I will keep everyone updated with Enya’s progress in 2011.

Update 26th October 2010

Enya is doing extremely well with her treatment, she currently has 2 more sessions of chemo and steroid treatment, and then she will be reviewed. She will need another MRI over Christmas time to see how the lesions on her spine and skull have reacted to the treatment. What treatment is needed next will depend on the results.

She has managed so well and the post she has been getting really has brightened up her day and put a big smile on her face. I can’t thank Post Pals enough for what they have done for her.

Story written 2007

It all started 12 months ago when Emma developed a cough. The Doctors said it was normal as she was teething but the cough never went away so I took her to another doctor who thought it was asthma. He sent her for chest X-rays which came back clear.

Emma would cough until she was sick; she missed a lot of nursery, so I missed a lot of college. Nine months later it began to settle down, however, she would have spells when it would come back strong for 1-2 weeks.

Emma started to get ill again, only this time she went off her food completely. She was having bad diarrhoea and was always being sick so we took her to our GP, A&E and even our local walk in centre. They all said she just had a viral infection but I wasn’t happy, in all we took Emma to see her GP about 40 times and our local A&E 15.In the September we took Emma to the hospital, we had to stay overnight. As well as the sickness and diarrhoea she was now having bad stomach pains. They didn’t examine her stomach and diagnosed another viral infection.

Three weeks later on the 12th November 2006 we took Emma back into hospital because Emma was having these pains and we saw a different doctor in A&E who found a lump in her stomach. This is when our lives changed forever.

We were told Emma had stage 4 Neuroblastoma, a type of childhood cancer. She is currently undergoing chemotherapy at Alder Hey, treatment includes chemotherapy, surgery, stem cell transplant, and oral chemo.

We write a daily diary entry on Emma’s website www.babyemma.co.uk

Update 2nd May 2008

April 23^rd marked the day of Emma’s first year in remission.

Emma continues to stay healthy and is so full of energy. Emma has an MIBG scan next month along with a spot urine test, so fingers crossed and lots of prayers that they both are clear.

Emma spends most of her time playing with either her peppa pig toys or Dora toys. She has developed a really cheeky little personality.

Update 15th April 2008

Thanks to the Thomas ball charity we managed to get away for a week at Easter and had an amazing time, as last year Emma was recovering from her first major operation. Emma has been really well and like always enjoying life, there isn’t a minute that goes by where she is not playing with her toys.

We have had a fair bit of post within the last 2 months, such as letters and pictures for her to colour in. Emma loves getting post – she gets more post than me and her dad, so thank you to everyone who has sent post to Emma and who continues to send it. Of course thank you to post pals too for making that happen.

Emma is on round 8 of accutane, normally you do 6 rounds, but we asked if we could extend it to 9 as Emma has never shown any side effects which we understand is very lucky and we are very thankful. Emma has been in remission now for nearly a year, so please keep praying that it stays that way.

Thanks once again.

Update 27th February 2008

Emma is still really healthy at the moment and enjoying life. We were in clinic on Monday 25th February seeing her doctor to discuss New York and he was pleased her scans were clear and she doesn’t need the 3F8.

She is not booked in to see her doctor until June, when she will have an MIBG, so we’re going to enjoy the next 4 months. Just please keep praying Emma stays this well.

Thank you so much to every one who has and continues to send letters, cards, post cards and presents. You have no idea how much this helps when keeping your child’s spirits up.

Also a massive THANK YOU to Post Pals as all this wouldn’t happen without the hard work of the team.

Update 3rd February 2008

Emma is really healthy at the moment. All her scans and tests were clear at New York’s MSKCC, so they do not want to do the 3F8 but want to keep a close eye on her by doing scans and tests every 3 months.

Emma is just being a typical 3 year old at the moment and all her hair is starting to come back darker and thicker than ever.

We have received over 40+ cards, letters, and presents for Emma since just before Christmas. Thank you so much!

Update 1st February 2008

I’m home safe from New York and most of all CANCER FREE! After having all the tests and scans (Bone Marrow, MIBG, CT, Urine and Blood Tests) I am now cancer free. These tests where different to the ones in the UK, they seemed more advance and done more to try and find cancer in my body. In the UK they only test the bone marrow in 2 places, at MSKCC they tested 4 different places and all came back negative. I needed to drink a contrast drink before I had the CT scan; it makes the picture clearer and more in depth. That came back all clear! Most of all, the doctor said that my MIBG scan was really good and clear, which was amazing as back in October there was some up take that looked like progressive disease, however, a CT showed nothing so it was great to see the pelvis area so clear.

So after 2 weeks of being poked with needles and getting put to sleep, I’m now home and very healthy. The doctors in New York want me to go back in 3 months time for the same test again as they believe that if the nastyblastoma comes back then the earlier they catch it the better they can treat it, but its up to Mummy and Daddy how and where I get checked up but I’m not bothered because am going to have fun fun fun!!!

Update 24th December 2007

Happy Christmas Eve! Mummy and Daddy told me that because I have been a very good girl, Father Christmas will be coming to my house tonight to leave some presents for me to open tomorrow morning. I can’t wait!

I’ve spent the last few days in hospital with a viral infection but I am getting better now. I still have a little cough but its going.

I have started my tablets again but this time I have to have 22 tablets everyday, so I have 11 in the morning and 11 in the evening but am a big girl and take them with no problems.

I went to see Cinderella in Manchester last Tuesday and it was really funny and I laughed from start to finish.

Update 28th November 2007

I have been really busy with my birthday party, seeing friends and having fun. My birthday party was amazing!

Tomorrow night I’m going to a special awards evening with Radio City 96.7. I have been nominated for the Child Of Courage award so it’s going to be a very special night as all my family are coming and it’s a star studded event.

I’m on Round 3 of my oral chemo. This is why I have 20 tablets everyday for 2 weeks then I rest for 2 weeks and this gets repeated for 6 months but I’m a really good girl and I have 10 in the morning and 10 in the evening.

Update 24th October 2007

I had my scan yesterday and it lasted about 30 minutes. We then needed to go and see our doctor so we waited in day care for him, Mummy and Daddy looked nervous but I was happy playing with the day care toys. The doctor took us into a side room and explained about the MIBG scan and why they did the CT scan today. The MIBG scan showed a little uptake in my belly and pelvis so I needed a CT scan to see if it looked abnormal, but the CT scan showed NOTHING! The MIBG is not 100% so when they compare the CT to MIBG, it shows that there is nothing wrong and everything is normal, so nothing to worry about. So everything is still on track, we have asked for the scans and reports to be forwarded to us so we can take them to America and see what they think.

At the moment I’m a happy little 2 year old (3 next month, don’t forget!) and because I’m on a very healthy diet I’m really well and plan to stay that way.

Update 21st October 2007

Well the doctor phoned and Daddy answered. My scan came back with something showing up on it, the doctor said it could be something or it could be nothing. I’m going back in hospital tomorrow for a CT scan and then we will have a meeting with my doctor straight after so we will know more about it tomorrow. I’m not one to be sad or feel sorry for myself so I’m spending the night playing with my toys and watching a dvd.

Update 16th October 2007

I spent the weekend in hospital because I was being sick but they don’t really know what it was, it could have been the side effect of the tablets I’m taking but I feel better now so thank you to all the doctors and nurses that helped me get better.

I was sent home on Sunday, but because I was having an MIBG scan today, I had to go back yesterday. They put a needle into my hand and it really hurt. Then I went and had a radioactive dye put into my body so they could take pictures. I was asleep for 2 hours and everything went well. I will get the results sometime tomorrow. Thank you to everyone for the emails and messages of support.

Update 24th September 2007

This month has been the best month ever! I have been so well and so full of energy. I went on an aeroplane for the first time; I went to see my grandparents in Spain and to thank all the people who have been raising money for me. I loved every minute of it and hope to go again some time.

Update 16th July 2007

Last week my Daddy spoke to my doctor on the phone and was told some good news, my tumour was over 99% dead and the other 1% had dying Neuroblastoma cells in which was amazing. You wouldn’t even think I had another operation as my scar looks just the same as last time.

I started my radiotherapy on the 10th July, it will stop my right kidney from working, Mummy and Daddy were very sad when they got this news as everyone has worked so hard to keep my kidney. I just hope I don’t get any problems with my other kidney.

The first day of radiotherapy was OK but on my second day I was sick all over our car. I was OK on the 3rd day, sleeping a little more. On Friday I was really sleepy, I slept from 4pm until 9am on Saturday morning. I ran into Mummy and Daddy’s room and woke them up you by shouting! You should have seen the look on their faces!

I have started my 2nd week of radiotherapy, but that hasn’t stopped me from being my normal cheeky self. I have been doing loads of stuff over the last few weeks, driving Mummy and Daddy round the bend and playing jokes on them. I don’t know where they got me from, I find Mummy asks me that at least once a day, but all you have to do is look at my Daddy and you know where I came from I got his sense of humour.

Update 26th June 2007

I had my operation last Wednesday, I went down to theatre at 9am, Mummy took me into a room and they gave me some magic milk and I went to sleep in Mummy’s arms. I know Mummy gets upset every time they give me the magic milk but what she does not know is that I really go and play with the teletubbies in teletubbie-land so she does not need to worry about me. The operation lasted 5 1/2 hours. The surgeons managed to remove the entire tumour. This is amazing as we only expected them to remove 2/3’s of it so thank you very much Mr Surgeon person.

I went into the recovery room and when I woke up Mummy was still there waiting for me. Everyone expected me to go to ICU but I ended up going back on my ward, I don’t need ICU care, as long as Mummy and Daddy are with me then that’s all that matters.

The next day I just stayed in bed watching DVDs all day but on Friday I wanted to go for a walk so I got up and went to the toy room and played with the toys. Am not going to let this operation get in the way of my toys!

I started eating and drinking on Saturday and then I was back to normal on Sunday, 4 days after an operation to remove a golf ball size tumour from my liver and I’m acting as if nothing has happened. GREAT! 🙂

So now I’m home and playing with all my toys and watching TV. The next step in my treatment is radiotherapy in July so I have a few weeks to build myself up.

Update 18th June 2007

Hello everyone, I have been a busy little girl since I last updated but it has not been good news. When I was in transplant I had an ultrasound on my belly, the one with the cold jelly! Anyway they saw something by my liver and needed to do a CT scan to see what it was. I have a tumour on my liver but the doctors don’t really know what it is and if it is alive or dead. The tumour has been there since day 1 and it has gone from 6cm x 4cm to 4cm to 3cm so we know it’s not growing. The doctors had a big meeting all about me and even asked for a second opinion about me. Last week went like this:

Monday – The doctor told me that after the meeting they have decided that it is to risky to remove and that the tumour is likely to be dead so they won’t remove it and I wont need another operation but they will ask another doctor to see what he thinks.

Tuesday – I went to see the doctor for my radiotherapy which is to start first week in July. Mummy and Daddy said we could go away for 1 week before the next stage of treatment starts. Daddy booked a caravan in Cornwall, starting this Saturday! Can’t wait!

Wednesday – Doctor calls to ask Mummy and Daddy to come in and speak to him on Friday.

Thursday – I have a CT scan for the planning of radiotherapy, Surgeon phones to say I have been booked in for the following Wednesday for operation to remove tumour from liver! WHAT?? So we need to cancel our holiday/break 🙁

Friday – Mummy and Daddy meet with the doctors and after asking loads of questions agree that the operation is in my best interest but have been told that they will not be able to remove the entire tumour!

So there you go, I started the week hoping to go away but ended up being booked in for another major operation for this Wednesday! What a life! It sucks having cancer but Mummy and Daddy make me laugh everyday and I’m in great health so I hope this operation is like the last one.

At the moment I’m in the “WHAT” stage and saying what to everything. I have taken up singing to the TV and am really cheeky to Mummy and Daddy. I’m back to my normal little self, the way I was before transplant. Dancing and singing everyday and smiling through this fight against cancer. I’m not letting this beast get me down. I’m only 2 years and 7 months old, I have my entire life ahead of me!

Update 2nd June 2007

I came home on Wednesday 30th May 2007. I was in transplant for only 19 days, and then moved into secondary transplant so I could have visitors. Those 19 days where the longest of my life, I think Mummy and Daddy will agree with me on that. I can’t imagine what Mummy and Daddy went through when I had 3 infections and the doctors talked about going to ICU because I was unable to take enough oxygen by myself. I was on oxygen for 7 days in total because of a chest infection and I was on every antibiotic going! I’m feeling a lot better now I’m home and I’m eating and drinking again so I don’t need the horrible NG Tube in my nose. I’m still not walking but that will come back with time. I never even lost any weight when I was in transplant, which the doctors where very pleased about.

Thank you everyone for all the cards and presents I received while I was in hospital. I received 100’s of cards and presents from around the world. Mummy and Daddy received some too.

Next step is radiotherapy; we have an appointment for the 12th June so we will see what happens and when they want us to start it. I’m planning on having loads of fun the next few days.

Update 3rd May 2007

It has started! I’m feeling the after affects of high dose chemo. The treatment I’m having now is probably the worst treatment I will ever have in my life and most people will never come close to pain and emotions you go through when having such harsh treatment. To go through high dose chemo and then a stem cell rescue to save your life is madness. To see other kids having chemo and the side affects of the treatment is unfair for anyone to witness. To be told you only have a 20% chance of beating this type of cancer is just unreal.

All this and I’m only 2 years old! I should be at home playing with my dolls and going to bed dreaming about fairies and princesses but I sit here playing with my sick bowl and listening to my IV machine beeping away in my dreams. I dream about being a normal little girl, not walking around the ward dragging my IV machine, no transfusions, no drugs and no more sickness. One day I will be back to normal. Everyday is making my body weaker but my mind stronger. I know I will grow up to be a success in life, going through this is the biggest lesson in life, the lesson being respect life and enjoy it to the max, if you do this then your life is a success. I’m just learning early, very early.

I sit here as I’m having a platelet transfusion (my levels are only 13), constant fluids are going into me and I have a really sore mouth, throat, belly and bum. My eyes are red and my face is very pale. My HB levels (red cells) are just above 7 so it looks like I will be having a blood transfusion tomorrow. I’m being sick every hour, sometimes more. The chemo has made my insides red raw so that when am sick, its blood! I’m so tired that I’m falling asleep as I’m being sick. I have not eaten for almost 1 week and when I try to drink, it comes back up with blood.

Mummy and Daddy are here at my bedside 24/7. They help me as I’m being sick, they change my bed when I have had an accident, they hold my head up for me when I’m to weak to do it myself. They try their best to make me happy. Daddy does silly things that make me laugh and Mummy runs around everywhere for me to make this experience as comfortable as possible.

Update 29th April 2007

What a week! I have had my little body filled with chemo for 5 days none stop, it finished on Saturday so they unplugged me and I was off to play with my toys. I have been stuck in bed since Tuesday and I was going to make the most of being free! There have been no problems this week although I’ve been sick a few times but this is because all the chemicals in my body and my belly. The chemo has killed all my mother cells that make my blood, platelets etc so as I use my cells up, no more will be getting made and my blood counts will start to drop, this should start happening in the next day or two. I will be moved into the transplant unit tomorrow and given back my stem cells on Tuesday and Wednesday this week. These will take about 7 days to get back into my bone marrow and start making my new cells. If am lucky I will be out in 4-6 weeks but it can take months. Please pray and send positive thoughts that it will be 4 weeks as I can’t stay away from the toy room any longer than that.

Update 27th April 2007

Well I’m here! I’m in Alder Hey Hospital in Liverpool and am having chemo and lots of it. I am on constant chemo that is going to destroy my bone marrow and make me really ill but kill any cancer cells that are hiding in my body.

I’m on the ward with other children but when my blood counts start to drop I will be moved into a special until and no one, apart from Mummy and Daddy, will be able to see me.

Update 13th April 2007

I received my start date for my bone marrow transplant; it starts on 23rd April 2007. I have 10 days to get even healthier and build my body up for this treatment. Out of everything I have been through, this is the most dangerous of all the treatments. I have chemo for 8 days straight! This will destroy my bone marrow and will make me really ill. I will be in isolation for anything from 4 to 12 weeks so I won’t be able to see any of my family, only Mummy and Daddy when am in transplant.

Update 9th April 2007

I’m home! Four days after my big operation, I’m fit and well enough to go home. I feel great; I get little pains in my belly but I’m big and brave. Bring on my transplant! We are now waiting for a letter to let us know when I start my transplant so for the next few weeks I will be getting even healthier and fitter so am in the best shape for transplant.

Update 8th April 2007

First of all, Happy Easter everyone! Thank you to everyone who sent me cards and presents, I received them from all around the world!

What a week! I think we should start with the main news, my operation. I was admitted to hospital on Tuesday 3rd to make sure I was ready for my op. My platelets where only 47 so I needed a platelet transfusion. The surgeon came to see me at 6:30pm and also to explain the operation to Mummy and Daddy. Mummy said he was brilliant in explaining stuff. He also told Mummy and Daddy that it was going to be a very long day for them tomorrow.

I was given a bed space on ward K3, this is the ward where my cancer journey started way back in November 2006 so I have lots of friends on there. Mummy and Daddy were given a room in the Mc House.

At 9:30am I was given a drug to calm me down and at 10am I was told it was time.

Daddy gave me a kiss outside as only 1 person is allowed in with me. Mummy came with me while they gave me some magic milk and off I went to teletubbie land. I don’t remember anything else for the rest of the day but Daddy told me that I was only in the operation for 3 hours and the surgeon said “it was the perfect operation” they managed to remove 100% of the tumour and save my kidney. I could not of asked for anything more. Thank you Mr Surgeon and his team!

I didn’t even have to go into ICU; I went straight into HDU and slept for the rest of the day. The next morning the doctor said I could go back to K3 so I was moved there at 11am. Mummy and Daddy bought me loads of new DVD’s so I watched them all day and night.

On Friday morning I was feeling a lot better. I was allowed a few swigs of water and some goat’s milk and I was sitting up in my bed. The doctors said I was doing fine and tomorrow I could start eating again.

Saturday was just unexpected! I woke up nice and early and wanted some breakfast so Mummy made me some nice organic weetabix with my goat’s milk and I ate all that up and then I wanted to go for a walk, yes a walk! The nurse said it was OK so off I went to play with the toys at the other end of the ward. I was even allowed to go for a walk off the ward so I went to see my friends on Oncology and to show off my new scar! I spent most of Saturday walking, bending and also running!

It’s amazing how well I am, Mummy and Daddy thought I would spend weeks in ICU but after only 2 days am up playing and walking as normal and am not on any pain relief.

Update 28th March 2007

Well, I am supposed to be on my way to hospital now but Mummy got a call yesterday morning saying that a emergency had come up and my “BIG OP” has been delayed until next week, 3rd April! I was all ready to get this nastyblastoma out of me but this just means I have another week to get more fit and healthy for my operation.

I have really enjoyed the last few days. All my family and friends have come round to wish me well… it looks like they will have to come again next week and bring me more presents! Hehehe.

 Update 25th March 2007

Emma is having her operation to remove the tumour on the 28th March, and her stem cell transplant hopefully 4 to 6 weeks after that. All is going well at the moment and we have had a lot of lovely hand made cards and gifts that have made her very happy and it’s all thanks to Post Pals.

Story written 2006

Darin was diagnosed in June 2002 with an astrotytoma in the optic-hypothalamic region; it is often referred to as an optic giloma. Darin has a variant called a pilomyxoid astrotytoma and although this is still a low grade brain tumour, this can behave aggressively.

Darin started his first chemo shortly after his diagnosis, it lasted a year. He then had a break of a year before restarting with the same chemo (careoplatin vincristing) due to tumour growth. During the second lot of chemo Darin experienced some hearing loss.

After a six month break Darin became symptomatic, a scan revealed new tumour growth and a cyst that needed draining. After an operation to drain the cyst, Darin started his latest chemo. As of September, Darin is six months into an eighteen month course of a weekly chemo called vinboastine.

For Darin all this chemo will not cure him, just buying him time in the hope that at some point in the future the tumour will burn itself out.

Darin has had many operations, from tumour biopsy and shunt placement, to shunt revisions and port placement (a type of central line). Darin has had five different ports; his latest was placed in august 2006.

Darin is visually impaired, he lost all his sight shortly after his diagnosis but in the next two years some gradually returned, his sight is now quite stable, enough that he has started to read and write.

Darin is an obsessive compulsive; he talks about the post and postman all the time and for him to receive his own mail would make his day!

Story update 2007

Darin finished chemotherapy but started suffering from more headaches and sleepyness, he was having the cyst/tumour drained weekly but it wasn’t helping for long, so in March 2007 he has started a 18 month course of chemotherapy again.

Update November 2009

Darin is now moving on from Post Pals, but I want everyone to know that Post Pals has been a wonderful addition to our life, the support that so many wonderful people have given us over the years has been amazing, through both good times and bad. Thank you.

Update 3rd August 2009

I’m sorry we don’t update too much anymore, Darin’s tumour seems to be holding steady which is great. Unfortunately I am now struggling with Darin’s behaviour, it hasn’t really ever gotten better since he was a toddler, but what was acceptable then really isn’t now. He is very needy and egocentric and can sometimes be quite aggressive. Most of the time he is a lovely child but he can change quickly if his routine changes. We are waiting for an appointment to see a clinical psychologist, in the hope that he can get some help.

Darin is away at over the wall camp this week in the Midlands. I’m missing him loads and it is strange not having Darin constantly following me around, but Emily and I are getting to spend quality time together, something that rarely happens when Darin is home.

Update 4th May 2009

Darin is doing well and we have had great news in that his tumour has shrunk a little – only the second time since his diagnosis!

Update 5th January 2009

Wow Christmas is over already and we are into another new year!

Darin had a pretty good month for the most part, his thyroid medicine is working well and his energy levels are so much better, which is great news.

Christmas was really special for all of us, I think it was the best since Darin was born. He got some really lovely gifts, including a pet dinosaur (called a pleo), which he loves as he can interact with it with out the use of remotes or any other type of control (which he finds very difficult to use).

Thank you so much to everyone that sent Darin a card, he loved having all the cards read to him. To our reindeer, Darin loved all the letters and he and Emily enjoyed all of Blitzen’s activities that were sent. To Post Pals for the goodies that were sent. Thank you to our two elves, who were Alan Barrett and a secret one, for all the gifts you sent, Darin loved opening every one of the pressies. Thanks to Karen, Molly, and Ruby, for the gifts you sent, Darin loves the car track and funny penguin and Emily always loves smellies. Thanks Nicola for the gift voucher, you read Emily’s mind, it was spent by the 27th on a bag she had had her eye on for quite a while! Thanks also for the box of goodies, Emily found it so useful. Darin also loved the pillowcase with the pressies inside, what a lovely idea, I have a feeling it will be used again. Thanks to C Cannon (hope that’s right) for the painting by numbers. I know I have missed at least one person as we also got an elephant mask and some stickers, but I seem to have misplaced who they were from, so I’m really sorry if I have missed you. Darin has really enjoyed every thing that you all have sent this year, thank you for all the support you have given us over the last few years, the cards and gifts have given Darin such a boost when he has been feeling low.

Update 1st December 2008

Well once again it has been a month of ups and downs. Darin is doing well at school but I was concerned about how tired he was getting, even though friends around me were telling me their kids were tired and it was just the time of year. I was still worried, so last week I called the endocrinologist (she deals with all the hormone stuff) and she rechecked Darin’s last blood results. It showed Darin was at the low end of normal for his thyroid so it was decided he should start on thyroxine. It’s just a small pill once a day, but it’s yet another medicine for him to take (and for me to remember!).

Darin had a lovely birthday. Thank you to Karen, Molly and Ruby and Post Pals for the pressies and to every one that sent him a card. He really enjoyed opening them all and having me read them all out to him.

We want to wish you all a very merry Christmas and hope for all our friends and fellow Pals that it’s an uneventful one (unless it is a good event).

Update 2nd November 2008

Darin has had a great month. People we have not seen for a long time keep coming up to me and saying how well he looks compared to last year and I have seen it too. He is willing to try new things, stuff that I thought he would never do. Last week we went down to Cornwall for the weekend and visited the Eden project, they had erected their ice rink already and I suggested we should all have a go. Darin was keen, but I was sceptical, I didn’t think he would last a minute after he got on the ice. Well he proved me wrong; he stayed on the ice for the whole 40 minute session and didn’t fall over at all.

It is really great to see Darin like this, so much of his life has revolved around the hospital, finally he is able to be a normal little boy. He does still get very tired so we do try not to do too much too quickly though. I just hope this lasts a long time!

Darin is counting down the days until his birthday. This year he is going to have a party with some of his friends and he is going to take them bowling as Darin wanted to do it last year but I didn’t think he was really well enough.

Thank you to everyone that sent Darin a postcard (Mandy, Michelle and family, Sarah and Gerry and Hannah) Julie Barrett and Post Pals for the pressie, which I think is an early birthday pressie so hasn’t been opened yet.

Update 7th September 2008

Darin has had a good month in general, although he is still getting headaches and is now saying they make him feel dizzy. Darin had his 3 monthly MRI and the cysts etc. are looking better. The tumour is pretty much the same and so there really isn’t an explanation as to why he is getting them. Darin had an eye appointment too which went quite well. We don’t usually see the same doctor and every time we have been before the doctor has never really seen past his eyes to the child, but this time the doctor really seemed interested in how Darin’s eyes affect everything he does and she promised to make an appointment to get him evaluated for low vision aids (although I’m told glasses won’t help him there are some other things that might like magnifiers). I was pleasantly surprised when we got an appointment through just a week later for the end of this month.

We had a great holiday in Wales – it was raining most of the week but we managed to have a lovely relaxing break and Darin got to see and do lots of new things like candle making.

Darin is back at school already and because of the rain we didn’t get out as much as we would have liked during the holiday, so I think Darin was pleased to go back and see all his friends.

Thank you to every one that sent Darin a card this month, he really enjoys having them read to him.

Update 1st August 2008

Darin has had a pretty good month this month. He is still a bit tired and headachy; it seems to be a common thing nowadays. The headaches are only in the morning now, so I think it’s just that the shunt is not draining correctly whilst Darin is laying down. It has been suggested I try one of those support pillows that are V shaped to try and stop him laying flat at night.

We are going on holiday on Saturday to a caravan in Clarach bay Wales. We are hoping the weather is nice!!

Please would you all spare a thought for Paula, Rob and Joe, as Jack Bradley B is being buried today. We had got to know the family so well over the last few years and we are all devastated that Jack lost his battle after fighting so hard for so long.

Thank you to Viks for the Post Pals party, it was so nice to meet some of the other families as well as Kate D and Karen (Sami).

Thank you to Percy the dog (and Jane for writing the letter). Also to Susan, Mandy, Lindsay and Karen, Molly and Ruby for the post cards. Thanks to Linda B, Maddie, Kerry and Amy, Helen, Michelle, Tim and Jonathan (X2) and Erin F’s Nanny and Granddad (also X2) for the cards. To Post pals for the Kung Fu Panda card mask and colouring picture. To June Junko for the card with the elephant and cats mini posters. Julie Barrett for the card and cardboard make your own elephant. Nicky for the card and colouring book and Grace and Chris for the card and sticker book. I seem to have a few other bits and pieces that I’m not sure where came from so if you sent any thing else, thank you.

Update 3rd July 2008

What a month! As usual Darin is keeping me on my toes. He had been doing quite well until Sunday. We took him to his swimming lesson and he flatly refused to even get changed to go in the pool. I was pretty cross and took him home. We were supposed to visit family as there was a birthday that afternoon, so I told Darin because he was so naughty he would have to stay home with Emily. So off I went. Well I got there and sat down and as soon as I did I got a call from Emily saying Darin had been sick. James, my boyfriend, said he thought Darin had just wound himself up which is not like him at all so we came home. Darin said he was fine and had a lay down but 5 minutes later he was sick again. I was concerned enough to call the hospital and they said someone would call back. About 10 minutes later Darin was sick again and by now I decided something had to be wrong and we headed off to the hospital.

Darin continued to vomit (10 times in total poor thing) so it was decided to keep him in and do a scan. It showed what looked like a shunt failure. On Monday and Tuesday morning Darin seemed to be better so he was scanned again and put on the surgery list just in case. By mid morning on Tuesday Darin was really sleepy and the scan was the same so they took him down and put in a new shunt and a device to drain one of the cysts that is becoming problematic as need be. The operation lasted about two hours but in true Darin style (stubbornness more like) he decided he didn’t want to wake up after the operation so was in recovery for quite a while. The operation was successful and it was felt Darin was well enough to come home yesterday and hopefully back to school Monday. Darin is not allowed to wash his hair for two weeks, which is not good as his head is covered in betadine or something like that and is really yucky and there will be no swimming for at least a month.

I felt so guilty for being cross with him. He has had a shunt for 6 years and never gone down hill that fast before, so I will need to be a bit more in tune with how he is feeling in future!

As usual I want to say thank you to every one at Post Pals and all of you that write, email or just think of Darin. Thank you to Hayley Thorn, Tracy, Gerry and Emily, Post Pals, Karen (Sami), Sophie P, Kerry and Amy, Tor, Dawn, Kate W, Shelia S, Mandy, Despina, Hannah and Gerry and Lindsay and Navaz for the cards, letters and postcards. To Tracy and family for the postman Pat sticker set, Sophie P for the stickers and pegboard, Post Pals for the elephant wrist band and cow and really big thank you to Munira Hamdan for adopting the pygmy elephant from the WWF in Darin’s name – he really loves the stuffed elephant and has named him Squirty.

Update 2nd June 2008

Darin is due a scan on Thursday. I don’t normally get on edge but Darin has started to get headaches and is very tired again so I just hope it is nothing and not a new cyst or the old one rearing its ugly head.

I just wanted to say a huge thank you to everyone involved with Post Pals. Darin has had so many wonderful messages of support and they have really helped during some tough times. Thank you to Julie Barrett, Viks, Mandy, Alison, Linda B, Helen F and pal Erin F’s Nanny and Granddad for the cards and post cards. Also to Sheila for the letter, postcard and key ring and to Karen, Molly and Ruby for the cards, I hope Ruby is feeling better now.

Update 6th May 2008

Darin is doing well, although he is still getting some headaches.

Last week Darin started to learn the guitar. He had been asking to learn for at least a year, but was told he was too young until now. He seems to have really enjoyed his first lesson.

Thanks to all that have sent Darin posty these last couple of months, he has really enjoyed every thing that has been sent. Also, thank you to Jade Boyd – Emily loved the lamp.

Update 2nd March 2008

Darin has had a pretty stable month. His headaches had lessened (as for a while they were mostly only in mornings as a result from lying flat all night, with the occasional one during the day) but unfortunately they do seem to be increasing again. I have not heard from the neurosurgeon as to what he wants to do yet – you may have noticed from past posts that we often play this waiting game. I don’t mind at the moment as Darin is too well for me to feel comfortable with him going in for another major surgery.

I have also decided that after missing out on the only holiday we had booked last year that we are going to have a really special one this year. So with the help of the Christian Lewis Trust we are going to Disneyland Paris for a few days next week.

I have also been approached by Make A Wish who asked if they could use Darin’s photo for some of their fundraising. I think he is going to be on the next dairy crest envelope collection as well as the MAW home money boxes.

I want to say thank you to every one that has sent Darin post this month. Unfortunately I am not too sure who sent what (my mum helped Darin open most of his post this month so it was everywhere – they both got a little carried away but had so much fun!) I do know that Karen, Molly and Ruby sent Darin a keyring with an elephant on it as well as a picture and a huge thank you to Leonie for the craft drawers and all the cards from your art trading card group. Also to Kate for the poem, I think I will frame it and put it next to the photo collage that Vikki sent. Thank you to Judi, Lindsay, Nicky, Eety and family, Michelle, Erin F’s Nanny and Granddad, Wayne, Helen, Julie and family, Linda, Kathryn, Cathe, Marylin and Damian, Colette, Sophie, Ann, Jenn, Hanna, St Matthews Sunday School, Mrs Skinner, Linsay and Navaz, An and Daphne. I really can not say thank you enough for all the support every one of you has given Darin, it has often given him something to smile about when he was feeling pretty low.

Update 1st February 2008

Well I’m not really sure where to start this update. If you have been reading Darin’s caringbridge site then you will know he has been having headaches and neck pains. Darin had a scan yesterday, which I will add he was so good for. My son is like a jumping bean, he just can’t keep still, yet he managed to lie still for more than 45 minutes yesterday. I was able to find the oncologist and we sat down and looked at the scans together (we used to have to wait for a radiologist to read them first, but now it’s all put straight on the computer and can be looked at immediately). We could both see that there was an area where the tumour has grown and that there is a bit of cystic activity. I have heard that sometimes the tumour can get a bit angry after the radiation just before it dies; however, the oncologist doesn’t think that is the case and wants Darin back on chemo soon. We have to wait until next Thursday when there will be a tumour board meeting to see what the recommendations will be. The scans will also need to be looked at by the neurosurgeons to see if something can be done about the cyst – they may go in and drain it or try and debulk it again!

I keep comparing how Darin was a year ago to now and there is none, this time last year he was sleeping most of the day away, I had a hard time getting him up to do anything, now he is full of life again. It gives me hope that this is just a temporary blip.

Thank you to Julie Wolverton, Erica, Kate Dee, Carol and David Bleasdale and Sophie P for your cards this month. Karen thank you for your email, sorry I didn’t email you back I will try to soon and I hope you are doing Ok!

Update 2nd January 2008

December just flew by for us. In general Darin is doing well, he is managing school although towards the end of term he was a bit tired. However he is complaining of some leg pain, we are seeing our consultant this month and will bring it up with him.

Christmas was wonderful; we spent the day at home playing with so many new toys. Boxing Day I had my mum and sister and her two kids over. It was hectic but a lot of fun.

Last week I thought Darin was having more trouble hearing so I called the audiologist, hoping to get an appointment within a week or two, but luckily they had an open slot that day. It turns out there seems to be a large build up of wax that is blocking the sound (this sometimes happens after radiation in the areas Darin had his) we were sent home with drops and an appointment for mid January to have his ears syringed.

Thank you to every one that sent Christmas cards, we had 33 in total, so I hope you don’t mind if this is a collective thank you to everyone and not done individually.

Thank you to Kelly and Emma for your letters and to Becki, Karen (Sami), Julie Barrett, Vikki’s Granddad for your gifts and to Karen Moore and family for the gifts for both Darin and Emily (Darin loved the stickers and Emily loves doing her nails), also to the person that sent Darin the stocking with his name on it, sorry we lost the label so I can’t remember who it was from. To our Elves this year, Allan Barrett and Paul and William another thank you, all the gifts were wonderful and much appreciated.

Update 5th December 2007

On the whole, Darin is well. We celebrated his birthday by going bowling and then eating pizza and we all had a lovely time. I do find it hard sometimes finding things both kids enjoy, not just because there is such a big age gap between them, but also because Darin finds most normal things difficult to do! I think bowling is a great compromise (once Darin got over the noisy atmosphere) as it is so adaptable.

Every one is really looking forward to Christmas this year and seeing out what started as such a bad year, but turned in to one of the best since Darin’s diagnosis.

Thank you to Megan C, Josh P, Katelyn M, Josh W, David B and Sanders school for the cards and pictures and to Post Pals, Karen, Julie B and Karen M for the cards and pressies. I feel like I have missed some people out, if I have I’m sorry that I haven’t put your names down, I think I wrote two lists this month and seem to have misplaced one of them (will have to check Darin’s room and see if he has it!)

Update 1st November 2007

This month has once again been full of ups and downs! On the up, Darin finally got his wish. It was a really lovely day and was picked up by the local newspaper (http://www.thisisbristol.co.uk/new/util/content.jsp?id=18695343 this was issued from an earlier press release and we didn’t manage to do it all, but I love the picture) as well as both BBC and ITV local news. It was also filmed by MAW and may be used to promote the charity (I got the video yesterday, I think it was so well put together). I will try and put it up on the internet along with some of the pictures. We have also been approached by cancer research as Darin got a little star last year and also that’s life magazine. I am not a great fundraiser but really feel if I can get people to understand how even so called benign (I hate that word) brain tumours are devastating then I feel I am doing my bit to help.

On the down side, Darin is still getting headaches and feeling sick. I took him in last week and they did a CT scan but every thing looked ok, this week he does seem a bit better though. Darin had an MRI on tuesday, it is his first since the radiation and this will be used as the base line from now on (he will be scanned every three months again now) from here we are hoping for stability or shrinkage of the tumour, any thing but growth! Next week we are going down to the West of England school, where Darin will get a full evaluation of his vision. It’s a two day assessment so should be very informative.

The week after is Darin’s birthday, he wanted a party for his friends, but I was too late, so instead we will just make it a family thing. He has decided he would like to go bowling then maybe pizza hut.

Can you believe we are just 8 weeks from Christmas! I keep looking back on this time last year, I’m so glad that it’s behind us now, Darin is doing so well compared to then, it has been a tough year for all of us!

Thank you to Karen for your letter, as usual Darin loves hearing about you, Molly and Ruby. To Julie Barrett for the book (which Darin loves) and Deb and Derek, I read the story of Sadako and her 1000 cranes a few years ago. I tried to fold a crane myself but couldn’t, one day I will get the hang of it and will fold 1000 cranes (well I just need 999 now), then I will visit her memorial, maybe I will get my wish, that one day Darin will be cured! Sorry if I missed any one out, my mum said that there is some more mail at her house but we have not been able to pop round and get it yet.

Update 3rd October 2007

Darin had a quiet start to the month, only a couple of appointments. He is quite tired, maybe down to the radiation or being back at school full time or perhaps a mixture of both. Darin had his port out last week along with 3 teeth, 2 were loose and the other he had managed to ground down right to the gum. Unfortunately, some of the port had got stuck and the surgeon couldn’t get it all out, but I’m told it really shouldn’t cause too much of a problem though.

I had to meet with the school this week regarding Darin’s literacy, they are really concerned that Darin is struggling with print reading. The school purchased a CCTV magnifier but it has to be enlarged so much that all the detail on the page is lost. They feel that Darin should be learning Braille again, which I completely support. We thought he would need Braille when he was a toddler, but the last two years he proved us all wrong by reading. Unfortunately, the debulking this year must have done some extra damage, it may settle and he may be able to read large print again, but it is best to start Braille skills early as it is very hard to pick up as you get older. He will still be using print to write though as he is too weak to use a Brailler. He now has his own laptop at school and is learning touch typing using speech software.

I think we finally have a date from Make A Wish as long as there are no more delays it will be October 16th. The post office are even going to supply him with his own uniform! I haven’t told him that it’s defiantly happening; I think I will keep it a surprise.

Thank you to post pals, Julie Barrett, Sophie P, and Sonia for the post cards, cards, letters and gifts. Julie, Paradise Park looks lovely, I will have to take Darin there one day. To Karen, George, Molly and Ruby, thank you again for your lovely cards, letters, pictures and gifts. Darin has had lots of fun colouring in postman Pat.

Update 29th September 2007

Darin was asked ‘If you could have a wish, what would it be?’ and he said to be a postman or to drive a digger. Make a wish are going to make him a postman for the day, and Post Pals arranged for him to go to diggerland. His mum said:

The weather was great and the park wasn’t too busy. In the morning we went fishing for ducks, searched for some treasure and did some digging using static diggers. We then drove some dumper trucks which Darin really enjoyed. After lunch we met up with Barry who took Darin out to a special area where he got to drive a full size JCB. He had great fun steering the JCB around on the mud and even got to shovel up, lift, and dump big loads of mud all over the place. After, he was very lucky and was given some lovely souvenirs from the shop and a certificate to prove he had driven a full size JCB all on his own, which he is very proud to show off.

It was a lovely day which we all enjoyed, especially Darin.

You can see the pictures here http://www.picturetrail.com/gallery/view?p=999&gid=17889907&uid=7162282

Update 10th September 2007

Darin finished the radiation in the middle of August. It felt very strange for while suddenly not having to be at the hospital every day, but we got over that quickly and began enjoying what was left of the summer holiday.

Last week we were invited to RAF Lyneham with a few other Clic Sargent families, the first thing we got to see was a Hercules plane. It was something that Darin had never seen before (the last time we were that close to a plane was about 3 years ago when we flew easy jet to Glasgow to stay at a Clic Sargent home called Malcolm Sargent House so he would not remember that). Darin was really scared but I managed to coax him in to the cockpit where he got to sit in the pilots chair and play with the controls which he did quite enjoy, but was still a little on edge. We had a very nice lunch and then got to see a bit more. They had a demonstration of some of the equipment they use, their guns, tents etc and then we got to see one of their fire engines, Darin loved that, he even got to drive it round the block. We all then got a ride in a herc simulator, which Darin quite enjoyed also.

We have also heard from make a wish. There had been some delays about granting his wish to be a postman, mostly due to all the strike action recently, but we heard on friday that the post office would love to help, so now it is being decided what they can do and how. Darin may even get his own uniform (if they make them small enough) and the possibility that it may be filmed as well, which would be a lovely keepsake. Hopefully it will be granted soon before it gets too cold.

Darin is really well at the moment, apart from catching a couple of bugs and getting a bit of sickness and diarrhoea (on wednesday he was sick twice and the second time his NG tube came out as well). I managed to get the doctors to agree that it did not need to be passed back down, so we are now NG free!! Without the tube Darin no longer looks ill which is nice.

Thank you again to post pals and every one that posted to Darin and Emily (thanks Kate D, she loved the pen and takes it to school with her). Thank you to Sameer, our pal Nicole D, Sophie P, Kate D again for your cards letters and pressies. Hope I didn’t miss any one, I think I kept up with what was being opened! A huge thanks to Karen Moore for all your support and gifts, Darin really enjoyed getting your letters and playing with your gifts.

To every one that has emailed Darin in the past, there was a mix up with our email address, so I did not receive any for quite a while. I just got about 17 of them all in one go! Here’s a belated thanks for all your thoughts and kind words.

Update 1st August 2007

Darin is doing so well now, better than anyone ever expected. We are now half way through the radiation and every body can see such an improvement in him, he is only taking the odd nap here and there. On a bad note though, the debulking has made Darin’s sight deteriorate again. I have had to contact a residential school for the blind so that he could be assessed as even his school are not sure what is best for him. He can no longer see the large print he was able to read, but we think he has a little too much sight to go back to braille. We will be going there in November for the two day assessment.

This month we are looking forward to ‘make a wish’ granting Darin’s wish to be a postman. He is really looking forward to it.

Thank you to Despina, Sophie P, Susanna Wilde, Cathe Garnett, Theresa, Fam Lappey, Pippa, Ellyn and everyone at postpals (he loved the balloon by the way) for the postcards, cards and gifts. Also a very special thanks to Karen Moore (Darin is really enjoying everything you have sent and getting to know you all) and to our well wisher for all the gifts you sent, Darin loves the tin of crayons and the colouring books, he also really enjoyed seeing the beast grow in his cage. As usual I hope I haven’t missed anyone, if I have, thank you.

Update 1st July 2007

The past week has seen Darin really start to recover. He managed 2 full days at school last week, something he has not managed to do for a very long time. I’m hoping he will manage even more this week. Unfortunately he starts radiation on the 9th, and no one can be sure how this will affect him so it might put us back again, but he is really enjoying being around his friends again.

Darin has been so brave this last month. He has had to endure some things that he really hates, the mould of the mask that he will have to wear for each treatment being the worst. He had to try and keep still while the tech put plaster of paris on his face and then wait for it to dry (he has a huge aversion to messy things like that!) Darin will have to wear the mask for about 20 minutes, 5 days a week, for 6 weeks. Something else that will be very difficult as he also doesn’t like to be confined.

Thank you to everyone that has sent post, visited his website or just thought of him. Thanks also to everyone at postpals for all that you have done.

Update 14th June 2007

I had a call yesterday from a booking clerk with dates for Darin to get his mask fitted and start his radiation. I’m not really sure how I’m feeling at the moment, I’m pretty upset that the call didn’t come from our oncologist and we didn’t have another meeting with the radiologist first. He will be getting the mask fitted next week, scans the week after and radiation will start the week after that.

I had to look after my two nephews last week; they are aged 2 and 3. The two together even at their age were so much easier than Darin, they played on their own and didn’t need me every 2 minutes. The time with them really highlighted how different Darin is and what this tumour has really done to him. I wouldn’t change him for the world, he is a very special little boy, but it really did make me feel like I have missed out on some special times that were replaced by hospital visits and chemo!

Update 7th June 2007

Not to much to report at the moment, apart from some headaches and still being tired, Darin is doing well. We are waiting on a scan to see if anything is going on!

Darin is still on the night feeds. We had some initial teething troubles where Darin managed to pull the tubes apart two nights in a row, getting milk everywhere. I can tell you even a small amount of it seems huge, I had to wash everything even his pillows were dripping with the stuff. I am glad I persevered as Darin has put on weight and looks so much healthier. I will put it down as one of the many things I can look back on and laugh about.

Darin is still not back at school, he managed half a day on monday, but has been too tired to go back since.

Thank you to everyone that has sent Darin cards and presents during our hospital stay, they really brightened up some very long stressful days!

Update 18th May 2007

Darin was discharged from the hospital on Tuesday. He has done remarkably well; everyone is so pleased with him. It’s really a testament to how great our neurosurgeons are and what a fighter Darin is.

Update 28th April 2007

Darin is recovering well, with just a few issues and he will be back in theatre on Tuesday.

Update 26th April 2007

Darin had his operation on Tuesday (sorry my fault for the wrong day) and it was a very lengthy one lasting 10 hours. He is recovering well though – so well that the neurosurgeons are considering operating again on Friday or Monday to try and get some more tumour out, as they didn’t get much from the brainstem.

Update 18th April 2007

Darin had another episode on Monday. He was falling over and was very shaky. He was scanned on admittance in case it was a shunt malfunction. Unfortunately it showed the tumour is still growing even with the chemo. It has really started to press on the brainstem, causing him to become very sleepy and clumsy. It is being decided if de-bulking the tumour will help or if we should just do radiation. I am devastated. You always know this day might come, but hope it never does as there are so many risks. He has already been pencilled in for the operation on Monday, if all the doctors involved agree it is the best thing to do.

Update 8th March 2007

Darin has a scan tomorrow and will be starting chemo on Monday. It’s a new one for us so I’m quite anxious as to how it will make him feel.

Update 5th March 2007

Darin will be restarting chemo in the next couple of weeks as he is still having so many problems with his cyst and our oncologist doesn’t want things to start getting out of control. Darin will be on this latest chemo for 18 months, but if after six months things are not at least stable, then we will have to switch to another chemo. We are just waiting one final time on the neuro surgeons to see if they will put another drain into the cyst to give Darin some freedom from his headaches. Darin is as always being such a brave fighter but I wonder what all of this is really doing to him.

On a good note Darin is starting Beavers. I thought it would be hard to get him in, but the group I found had a couple of spaces and its quite small with only 13 other kids. The leader is one of the BMT nurses at our hospital and known to Jack Bradley B’s mum, so that has really put my mind at rest about leaving him without the 1 to 1 he is used to.

Update 9th February 2007

Darin has continued to have his cyst drained this month; unfortunately it no longer seems to be successful as Darin has started to get headaches again.

Thank you to Julie Barrett for your cards and note pads to both Darin and Emily. Kate Dee, Katie, Nicky W, Anne Parie and all in Bradenton, Florida for your cards. Rachel for the postcard and Susie for your card and the lovely elephant, Darin said he was very cross for being stuffed in the envelope and very relieved to get out! :o) I do think he is still a bit annoyed though as he still wont tell us his name…

Update 2nd January 2007

Darin has had a good month this month; however he has become anaemic and is still going in to hospital weekly to drain the cyst.

Thank you to everyone that sent Darin a card for Christmas, I would like to say thank you to all, but we got so many and I don’t want this update to go on for too long! Thank you to Julie and Alan Barrett for all the gifts you sent this month. To Paul and Barbara Morgan for the snowman activity book, Karen Reece for all the stickers and chocolate, Susanna Wilde for the fridge magnet, post pals for the stocking kit and Charlie for your gift, the cars and Christmas activity book have been played with a lot.

Update 2nd December 2006

Darin is feeling better now that the weekly chemo has been stopped. It puts me on edge though as there is now nothing to stop new tumour growth, this means any signs (like loss of balance) will have me in knots thinking there is new growth. We are still waiting to hear if Darin will need surgery on the cyst, he has had it drained a couple of times now.

Thank you to every one that sent Darin cards and presents this month, they really cheer him up.

Update 17th November 2006

Darin is still not right! I have to wait until monday to talk with the oncologist about what we will do. I missed his call this evening due to a trip to A and E (Darin has developed a lump near his port, the x ray showed nothing was broken so next time the port is accessed they will put some dye through it to check it’s not leaking).

A huge thank you to Laura and Chris for the birthday card, to Kate for the card and stickers, Julie and Alan for the card, book and Postman Pat make a scene, Mandi for the card and elephant make and build and Kate Dee for the toy elephant, we all got a kick out of the way the arms and legs grew and shrank (I hope I got everyone and all the right names with their pressies, Darin got to them again before me he was so excited).

Update 9th November 2006

Darin had an mri scan today, there are some changes and we think Darin will need surgery next week, please read his page to keep up with the latest news.

Update 2nd November 2006

Darin has had a bit of an up and down month. We are waiting for a MRI scan to see if the tumour is stable and a test to see if Darin is developing diabetes insipidus (not the same as diabetes this is to do with thirst).

Thank you to Cherie and Itsy, Katie Hammond, Karen, Nicky Walker, Becky and Julie and Alan Barrett, for the cards and gifts you sent. Darin has really enjoyed receiving them. Thank you also to the person that sent Darin the note pad from Israel, sorry I don’t know your name.

Story written 2005

It was early November 2004 when we first noticed a small bump on Daniels chest. We (Sue and I) believe it to have been caused when Daniel had fallen off his skateboard a few days earlier. We decided to keep an eye on it.

Daniel had also had a cold and he started to have difficulty in breathing by the second week in November.

On the first two visits to the doctor they believed him to have asthma and an inhaler was prescribed. Needless to say it didn’t work and we attended the GP for a third time. By this time his veins were very prominent and his breathing was worse each day.

The doctor was obviously very concerned. Within five minutes he gave us a sealed envelope and told us to go straight to A+E. As soon as we were in the car I told sue to open it. It said “Tumour???” We felt sick and my speed increased to 90mph.

Whilst in A+E, a squad of doctors examined him. Blood was taken, Daniel was petrified. Following the x-ray we were told the earth shattering news that he had cancer. It was the worst day of our lives.

The situation with his breathing was critical. Chemotherapy began immediately.

About a week later we were told that Daniel had Non-Hodgkin Lymphoma T-cell stage 3.

The chemotherapy appears to be working but every single day is a nightmare relived.

Daniel is the bravest 6 year old I know. He’s spent months in hospital; endured severe pain, had 14 general anaesthetics etc.

Update June 2007

I would like to thank you for all the help and support and contacts, cards and presents received through this great site.

I think that the time has come for Daniel to go onto the “Moved on” list. He has been off chemotherapy for over 6 months and is doing well. His Consultant is very pleased with his recovery and we hope this will continue.

So from Daniel and all the family, “Thank you, Post Pals”.

James (Daniel’s Dad)

Update 13th May 2007

Daniel is doing very well 6 months on from the end of chemo. He is due to have his booster injections again soon as the chemo wiped them out.

Daniel has now made it to the Backwell Wanderers Team (kit is black shorts and green and black vertical stripes for the top). He loves it and his favourite player is Manchester United’s Ronaldo, together with the rest of their team!

Update 31st March 2007

Daniel has been in the wars recently. He caught Chicken Pox from his 3 sisters and ended up being unable to fight them off without being in hospital. So, in he went… for a week. He had a really bad time of it and ended up having his 17th general anaesthetic. We were assured it was for the best but the longline that was inserted only lasted 12 hours. Anyway he ended up learning how to take tablets and was eventually able to go home. He has since started to play for Backwell Wanderers which is all he seems to live for at the moment!!!

Update 30th December 2006

Daniel finished his chemo in November so we’re pleased but at the same time rather apprehensive as to whether it has all worked.

We had a scare a few weeks ago when he ended up in hospital with concussion that he sustained at school playing football! He recovered fairly quickly but we seem to be forever paying trips to the hospital!!

Daniel is on medication for another three or four months and then there will be none.

Thanks to Kate, Lorna and Nicky. We love the cards and pressies. You’re all too generous. Daniel and the kids were VERY excited about the cards from the Reindeer!! Thanks to anyone I’ve missed out. The kids end up getting hold of the post before we do so we’re just left with a huge mess of ripped up envelopes!

Update 19th November 2006

Daniel’s 2 year anniversary came on 11.11.06. He finished his chemo on this day and now has only a few months left of his other drugs. He’s full of life and he loves his football. Daniel and the girls love opening their letters and pressies!

Update 1st October 2006

Thanks again for all the mail received.

Daniel has just two more months of chemo and then it’s wait and see time. The doctors are very pleased with his progress and he’ll be pleased to stop the medication.

Update 16th June 2006

Unfortunately Daniel seems to have picked up the “slap cheek” virus which has caused his bloods to crash. He’s well in himself but has to stay off school as a result.

Thanks go to Julie for the lovely cards to Daniel and likewise to Nicky for the ones to Francesca.

Update 7th May 2006

Daniel’s had a bit of a rough time with a nasty virus which wiped him out for a week at Easter. He had to come off of the chemo. To make things worse Gabriella ended up with Pneumonia and the entire family went down with a sick bug!! We’re all better now, thankfully.

Update 1st April 2006

Daniel’s blood levels have been a little up and down recently. He’s also had a very bad cough and had to go to the hospital yesterday and was put on antibiotics. He already seems better. He was out pretending to run a marathon yesterday evening!! Natasha, Gabriella and poor old Dad now seem to have caught it!! Always the way!

The kids love all the home made cards. They’re superb. Thanks to Nicky W. Francesca loved the jokes!! Thanks to Lorna, the girls loved the growing kit. Thanks to everybody else that have sent gifts to Daniel and the girls.

Update 2nd March 2006

Post Pals has brought smiles to us yet again this month, so thanks to you all.

Daniel has had a few colds recently and Gabriella had to go to the local hospital to get checked out. She had the virus that’s been doing the rounds in the school. She’s better now. Daniel seems to have a new cold and his blood count has dropped a little so his oral chemo has had to be reduced. He remains in good spirits and is looking forward to seeing the Bristol Clifton suspension bridge and the SS Great Britain tomorrow with his class. I hope it’s not too cold.

Update – Daniel loved the trip and is now an expert on Isambard Kingdom Brunel!

Update 18th February 2006

Daniel goes from strength to strength. He saw his Consultant, who’s GREAT, and she recommended upping his chemo dose to 175%!!! That’s not even in his protocol. Anyway the higher the dose he can take the better. It helps to prevent any return of the NHL.

Daniel’s had a few coughs and colds but nothing major.

I’d like to say thanks to all the post pals out there. It’s been great reading the letters etc to the kids.

Update 24th December 2005

On behalf of Daniel and his entire family, thank you for all your support over this year. It’s really made a difference to our lives. Merry Christmas and a Happy New Year to you all.

Update 10th December 2005

Daniel continues to do well and his blood figures are great so he stays on 150% Mercaptopurine and Methotrexate… That’s over two months on 150 now!

He’s loving being back at school. He did the Christmas Nativity play with his twin sisters. He was one of the choirboys messing about at the back with his friends!

Update 15th November 2005

Daniel continues to do really well. He’s still on 150% of his 6MP and Methotrexate and his consultant is very pleased with how is able to tolerate this chemo. She said he must have very efficient kidneys and liver. She also said he doesn’t need to see the cardiologist for five years!

Daniel loves being back at school. He’s even keen to practise his writing and spelling at home unaided!!

He’s back to his old self again, at last.

It’s been 12 months and 4 days since he was diagnosed and our lives changed forever… but wow, what a difference a year makes!!

He’s a top boy that’s fought every step of the way. We are so proud of him.

Update 20th October 2005

Daniel is doing really well. His bloods are very good and he’s been on 150% of chemo for the last two weeks.

He had his first haircut in over 12 months yesterday. It’s starting to go a little darker.

Daniel has started his football again helped by a recent visit to Bristol City and he’s even started Karate!

Update 23rd September 2005

I had my line out yesterday after 10 months!

Update 27th July 2005

Daniel is doing well at the moment. He has just started his Maintenance Therapy which involves 2 years of oral chemotherapy. It shouldn’t knock him as badly as the previous eight months of intensive intravenous chemo.

His blood levels recovered well enough for him to be able to return to school for the last week of term. He loved seeing his friends again.

We’re hoping that his Hickman Line will be removed so that when he returns to school in September he’ll feel more himself. His hair has started to grow and he says he wants it to grow as long as Anakin Skywalker’s in the Star Wars film Revenge of the Sith!!

He’s in good spirits and can’t wait to get back to school.

He’s enjoyed all the post he has received as have his sisters.

All the children loved making things with the modeling clay. Mostly fruit and Star Wars lightsabres!! He loved the cards had made by the Primary school.

I, on behalf of Daniel, would like to say a big THANK YOU to all those kind hearted people out there. It really restores faith in human kind.

Story written 2008

Dan is 13 years old and his sister Mollie has been featured on Post Pals for some time.

Doctors have found a large mass in Dan’s knee bone and have told us that it is very serious and life threatening as they think its cancer, they just don’t know which type until they have done more tests. They have referred him to Birmingham hospital which he will go to this week. We don’t know for how long for but they told us to prepare for a long stay.

Update 16th March 2011

Now that Daniel is 16 I think it’s time for Daniel to leave Post Pals and make a space for another sick child.

What Post Pals has done for Daniel has been amazing and I would like to say a big THANK YOU to everyone who has taken the time to write to Daniel and send him gifts.

I hope that these generous people can now send the gifts and cards to another deserving child and put a smile on their faces like they have done with Daniel.

Once again, I’d like to say a huge THANK YOU to everyone who has taken the time to send Daniel post for the last couple of years.

Update 10th January 2011

Daniel is doing really well with his physio although they have told us his leg will never be straight and it is as straight as he can get it. He goes to the hospital next week for routine tests so we are hoping everything is going to be ok.

Daniels PSP got stolen so he no longer uses one but he’s still into greyhounds and music.

Thank you for Daniel’s Post Pals post, it’s very appreciated.

Update 9th December 2010

Daniel saw the consultant from Birmingham the other day and he was really pleased with Dan’s progress, even though he his still unable to bend or straighten his leg fully. They can’t see it getting any better though and think it will be like that permanently.

Many thanks to everyone who continues to send post to Daniel, Post Pals always manages to put a smile on my son’s face, even though he’s 15 and thinks he’s an adult.

Update 17th October 2010

Daniel is due to go to Birmingham next week for a week of intense physio to try and get his leg straight.

I think what Post Pals do is amazing; I know they manage to put a smile on my child’s face so I’m sure they do it to other children as well. To me that it priceless and to all the people who take time out of their lives to write a letter or send a gift – a big THANK YOU to you.

Update 14th August 2010

Daniel is due to have another operation on his leg (2/9/10) at Birmingham Royal Orphopaedic. After this he will hopefully be able to straighten and bend his leg and will be able to walk properly, as since he went on the Ellen McArthur Sailing trip in July his leg has got a lot worse.

Thank you to everyone to has taken the time to send Daniel post as it’s very much appreciated.

Update 5th June 2010

Daniel is still awaiting a date for his operation and is getting very frustrated as he can’t walk properly, but has got a new leg brace for support.

Thank you to everyone who sent post to Daniel last month, it was very much appreciated.

Update 1st May 2010

Daniel has to have another operation on his leg next month to hopefully get it straight enough so he will be able to walk better and unaided. We just have to wait for a graze to heal on his knee from another fall.

Thanks to everybody who has taken the time to send Daniel post this month as he has had lots. Thank you to everyone who has sent Daniel a gift this month, especially the person who sent him a boxful of x-box games but didn’t leave an address, and the person who sent him PSP games and the greyhound rescue in Scotland.

Update 10th April 2010

Daniel is having a lot of trouble with his leg at the minute and is having lots of physio as he is unable to walk properly which is causing him to have problems with his back and spine. We are waiting to see what his consultant says on 12/4/10 as he his getting very tired and feels down a lot.

Thank you for the post that has been sent to Daniel.

Update 6th February 2010

Daniel had a full leg pot/cast put on a few weeks ago and was told on Tuesday that he would have it on for a couple of months. He wasn’t very happy as he thought he would have it off for his birthday, but hopefully it will get his leg straight so he won’t need to go back to Birmingham for another operation.

We would like to thank everyone who has taken the time to go out and buy a card or gift or send a letter to Daniel, it is very much appreciated.

A big thank you to the McQueen Family for the Lego Bionicles that they sent Morgan yesterday. He really loved it and it gave us a couple of hours peace as he made a fort for it with a shoe box and was playing with it for hours. It’s the little things that count.

Update 2nd December 2009

Daniel had a fall on Friday and cannot straighten his leg. Luckily he hasn’t done any damage to it (as the physio thought he may have) but it has put him back to the beginning as he has been losing weight drastically so has got to have special feeds again.

Thank you for he post Daniel received in November.

Update 2nd November 2009

Daniel has had his Broviac line taken out and they are trying to get his dose sorted with his injections, as it keeps knocking his levels low every time he has it and hasn’t managed to get to the normal dose yet. He is also having a lot of physio on his leg to build his muscles back up but is having problems with his hip as the muscle has gone weak. He is also having problems with the ankle on his good leg, as he is starting to walk on the side of his foot, so we are seeing the orthotics people this week.

Thank you for the mail that Daniel has received this month.

Update 4th September 2009

Daniel has just started his injections.

Thank you for cards, letters and gifts that he received last month.

Update 20th August 2009

Daniel has finally finished his chemo and is now waiting to start his injections.

Thank you for the cards, letters and gifts that have been sent to him this month.

Update 18th July 2009

Daniel has had a bad time in hospital with pneumonia and was really ill for a while. Although he has got over the worst of it, he still has infection on his chest and it has really knocked him for six.

Thank you for the cards, letters and gifts Daniel has received this month.

Update 16th June 2009

Daniel spent all of last month in hospital with chemo.

Thank you for the post he has received, we think what Post Pals do is brilliant and it cheers the children up.

Update 4th May 2009

Daniel is still undergoing chemo. He was supposed to be in Birmingham for intense physio but has been sent home because his levels were low.

Thank you to everyone who has sent Daniel a card this month.

Update 7th March 2009

Daniel had is operation in Birmingham and it was a success.

Thank you for all the lovely birthday cards Daniel received this month and for the letter and gifts he received.

Update 11th February 2009

Daniel is going to Birmingham tomorrow to have an operation to give him a new knee and bone.

Thank you to everyone that has sent Daniel a card, letter, or gift this month.

Update 28th November 2008

Daniel goes back into hospital on Monday to start his chemo and he will be in for the next 3 weeks.

Thank you to everyone who sent cards and post to Daniel this month as post brightens up his day.

Update 7th November 2008

Daniel has just come back from Sheffield Children’s Hospital today as he had his line put in. He goes back in on Monday to have a kidney scan and to start his chemo. He will hopefully be home Wednesday or Thursday if everything goes ok.

Update 29th October 2008

We had it confirmed today that Daniel has definitely got Osteosarcoma and that it has spread to his soft tissue and we are now waiting to hear from Sheffield as to when he will start his chemo.

Update 24th October 2008

The doctors are 99.9% sure Daniel has Osteosarcoma, it won’t be confirmed until Tuesday or Wednesday of next week though.

Story written 2007

At the age of 18 months (in Jan ’05), Christian was diagnosed with a very rare cancer (approx 15 children a year world wide) called Clear Cell Sarcoma of the Kidney (CCSK). He underwent 5 ½ hours of surgery to remove the tumour and kidney and we were told he had Stage II. He then underwent 8 months of chemotherapy during which time he was often ill and spent a lot of time in our local hospital.

However he finished his chemo on Sept 30th 2005 and spent most of 2006 doing what most normal 2 year olds do – attending nursery, making lots of friends and playing. However, in the summer I noticed that he seemed to tire quite quickly, and he was starting to wake in the night complaining of a sore knee. At his 3 monthly check in August I mentioned this to his consultant who was a bit worried as CCSK tends to spread to the bone. She examined his left leg but couldn’t find any swelling. We decided to wait until his next check in November. In between the two appointments his night waking increased, and I did phone the hospital to let them know, but the messages didn’t get passed on, as I was to find out later. Whilst everyone told me how well Christian was looking, I just knew that he wasn’t right. At our next check up in November it was decided that he should be booked in for an MRI scan. The results showed that there was an increased area of activity on his left femur. Whilst they were 99% sure that it was the same cancer that had come back, they were reluctant to start chemo until this was confirmed with a biopsy. We trekked to the specialist bone hospital in Stanmore for the biopsy, and a week later were told that they didn’t get enough sample and that we would need to go back – this time for an incision biopsy (as opposed to the needle one).This could not be done for another week, and then we had to wait another week for the results – which were what we had known all along; that the CCSK was back.

He has now started an intensive round of chemo (I thought the first time was pretty intensive!) for 15 weeks, followed by a one off really intensive dose whereby he will be so ill he will have to remain in the hospital for anything from 4 weeks upwards. During this time he will receive a stem cell transplant. After this we will have to consider radiotherapy and/or surgery. They have warned us that the odds are stacked against us, but we have absolute faith in the doctors and know that Christian is a true little fighter! At present we are nearly half way through the first lot of chemotherapy.

Update 5th January 2008

Christian has just had a check up at the hospital and apart from some unexplained tiredness that we are keeping our eye on, he is still in remission, so I feel we should now change his status to moved on.

However, I would like to thank each and every person who so kindly sent the boys presents and cards. I will try to send some photos for you. A big thank you to all of Santa’s reindeer – Henry was delighted with their cards! Thanks also to the person who sent Henry some much loved Yu-Gi-Oh cards – I couldn’t read their writing properly for their email address and so have not been able to thank them.

Happy New Year to you all – and thank you for helping to make this past 12 months bearable!

Update 12th December 2007

Christian has been a bit poorly in November, which included a dreaded hospital visit. However, he has since recovered and is thoroughly enjoying school. He has his next big check up in the New Year, and assuming we get the ALL CLEAR I will suggest changing Christian’s status on Post Pals site to Moved On as I feel there are other, more poorly children on the site who deserve the cards, emails and gifts more than us. In the mean time, thank you to everyone who has been sending things our way regularly over the past 11 months. You are all angels.

Update 7th November 2007

Christian continued to do really well during October, but towards the end he was appearing to look exhausted – even after a week for half term of relaxing and not doing much. He is now quite poorly but I am sure it is just a nasty cough or cold bug that he can’t quite fight.

Update 28th September 2007

Last week Christian had a bone scan and a CT scan and the results came back today – he is clear of cancer!

We’ve got a long way to go and he is still in danger from the treatment (his kidney function, for example, is still not what it should be) but we are obviously very relieved.

Update 7th August 2007

All is well with us here. Christian recovering nicely and we had a glorious two weeks in Spain at the beginning of July and are going back for the last week of August. We are still not sure if they have managed to get rid of the cancer and will not know until September when he will have an MRI of his leg and a full body bone scan, so fingers crossed.

As always thanks to everyone at Post Pals and to everyone who has sent the boys cards and birthday presents too! They have been over the moon with everything. Kate Dee, Katie Plant, and of course the wonderful Jamie – a big thank you! However, since Christian is doing so well at the moment we feel slightly fraudulent accepting such generosity!

Update 11th July 2007

Christian completed his radiotherapy on 4^th July and had his Hickman Line removed on 5^th July!! We are all very excited about the summer now and looking forward to going to Spain later this month. Christian can not wait to jump in the swimming pool and run around on the beach. Psychologically he seems to have been quite affected by everything and is having terrible night terrors that can go on for most of the night, or just for 30 minutes. I really hope that when we are in Spain he will start to forget about everything that has happened to him this last year. Physically he seems to be getting stronger every day as his appetite increases. He still wakes up every now and then at night with tummy pain, but that seems to be the end of the mucositis which he got from the High Dose Chemo.

Thank you to everyone at Post Pals and to Jamie Harrington, Bambino Baby, Jack, Harry, Charlee and Chris, Cathe Garnett, Chad Freeman, Craig Packham and WWF – and of course anyone I have forgotten as there are still occasions when the boys get to the post before I do!

Update 11th June 2007

The transplant is over – Hoorah! The month spent in hospital was tough and not without the odd complication but Christian is now at home recovering well. He seems to be doing OK, but is still in pain (especially at night). We have had two weeks at home, off from all chemotherapy and other drugs which has been great. However, we are due back at the hospital to start his daily radiotherapy Thursday 14^th June. Poor thing will have to have it under a General Anesthetic every day.

Thank you as always to all of you at Post Pals – you are great. Thanks also to Julie and Alan Barratt, Katie Plant, Jamie Harrington, Helen Brierley, all the lovely Pal emails that have been forwarded and anyone else I have forgotten (I am not at home at the moment so don’t have access to all the cards and notes that I saved specifically for this message!! Sorry!) The boys really have been spoilt this month by all of you and we are eternally grateful x

Update 3rd May 2007

Christian has now been in the hospital for one week. He was due to have the Stem Cell Transplant today, but they have decided to hold off until tomorrow morning. This has something to do with his chemo finishing late on Monday evening and they need to have 72 hours between the chemo and the transplant. Once he has the transplant we have been told it can take about 3 weeks for his body to start making blood cells again. In this time we expect him to be quite poorly. However, on a happier note, he has been doing remarkably well with everything so far. He was receiving continuous chemo for 5 days prior to the High Dose and apart from nausea (which was controlled with about 4 different anti-nausea drugs) he has been on pretty good form. He seems genuinely quite happy to stay at the hospital, although we are changing rooms today as our pull out bed has bed bugs!! How disgusting is that!! This isn’t necessarily the hospitals fault as once these little critters get in your bed, you are stuck with them. The hospital said they have had them before and threw out the mattress, but the bugs bury themselves into the wood of the bed too! Oh well, hope they aren’t in the new room!

Big thank you’s to the following for their generous gifts and cards etc for both the boys:  Helen Brierley, Kate Dee, Julie Barrett, Katie Plant and of course lovely JAMIE!! Not forgetting all of the most wonderful girls at Post Pals. You are all angels.

Update 1st April 2007

Christian has had a relatively good month with only one local hospital visit for a platelet and HB transfusion. He also managed a morning at nursery before they broke up for the Easter holidays! He was admitted for his last chemo, before the Intensive High Dose and Stem Cell Transplant, on Weds 28/3 and we were due to leave on Friday evening, but he spiked a temperature and came down with a nasty cold. As of today (1/4) he is still there, but is definitely feeling better so we hope to have him home soon. We had some good news this month with the results of his MRI saying that there was no spreading of the cancer, although it is still very obviously in his left femur. He is due to go in for a CT scan of his chest, tummy and pelvis this month and then on approx 26/4 he will be admitted for the Intensive High Dose. They have decided to give him really high doses of two of the chemo’s he has been having over the last 4 months, on a daily basis for one week prior to the Big One. The Stem Cell transplant is due on about May 3^rd. We have been told that we will be in hospital for approx 4 – 6 weeks.

As always I would like to thank everyone at Post Pals for bringing great big smiles to both Henry and Christian. I would also like to say thank you and send a hug to Katie Plant, Kate Dee, Alison Richards, Helen Brierley and a big thank you hug to Jamie H. Christian also received his beautiful quilt and he loves it!

Update 2nd March 2007

Christian is in hospital at the moment. He was admitted on Wednesday as his Hickman Line site (where it enters the skin) was looking very red and sore and a bit infected. Even though he was neutrepenic (no white blood cells) he didn’t have a temperature and was on quite good form so we were hoping to come home yesterday (Thursday) evening. However, towards the end of the day, the biopsy scar on his leg started to get red and swollen and he spiked a temperature so he has stayed in again. My husband and I, and about 100 of our friends, are due to run in a 10k race this weekend in aid of our local hospital. We have so far raised about £65,000! Fingers crossed that we will make it!!

As always, a big thank you to Jamie H (Christian’s new best pal!) Kate Dee, Angie, Leanne & Bailey, Angela and all at Post Pals. I am sorry if I have missed anyone off but yet again I don’t always get to the post before the kids! Please don’t stop sending your cards and gifts – they always brighten our day.

Update 11th February 2007

Christian has been in and out of hospital since he started treatment – mainly due to his blood count being so low he can’t fight infections. He was admitted into our local hospital for 5 days recently and on top of all the various different intravenous antibiotics and other chemicals being pumped into him he received two blood transfusions. We are due back at hospital next week for 3 days of chemo as an in patient. Only two more of this round left – then the Big One.

Thank you from all of us to all the lovely people who have been sending cards, letters, emails and gifts. Christian has received many cards, letters and little packages – the problem is he and his brother are always in such an excited hurry when they see them that they open it all up before I get there and so I unfortunately I don’t always find out who has sent them. The people I do know to thank are, Kate Dee, Helen Brierley, Laura H, Jamie Harrington and the Garnett Family in the States. Please forgive me if I haven’t mentioned your name, I promise to keep a better eye on the post from now on and get to it before anyone else!

Story written 2005

Chloe was born with Complex Congenital Heart Disease, she has 4 large defects in her heart.

She spent her first year of life in hospital with various related illnesses and underwent her first surgery at 6 months old. She was NG tube fed all this time. At 19 months old she had her second lot of surgery followed 3 hours later by her third due to internal bleeding.

Two days before her 2nd birthday, she suffered two big strokes and was paralysed on her left side. She worked hard over the next year to regain mobility, and did really well, although she still suffers with stiffness from time to time.

She finally managed to stop tube feeding at about 4 years old, but finds it very difficult to eat still. At 5 years old she had her fourth major surgery, and suffered many many complications, she had 12 procedures in 10 weeks and missed the entire of summer 2004.

Its taken her another year to recover from her ordeal, and is on a high calorie, high fat diet, which she finds very tough to deal with, as well as being on many restrictive medications requiring blood tests and limiting her daily life to not being allowed to play outside with other children in case she gets hurt or too tired, or being able to take part In school PE classes.

She is now awaiting the day when she will have to be placed on the transplant list for a heart and lung transplant. She can only get about in her wheelchair when we are out anywhere and tires very fast.

Update 12th November 2008

Rehearsals for The Choir are still going strong and Chloe loves it.

Health wise, all is pretty much the same. She has a check up in December, so we will have more to say then.

Update 1st October 2008

Not much to report, Chloe has got a new wheelchair, this time with big wheels that have flowers on them. She can’t push it much herself, but she does try and feels a bit more independent doing so.

An exciting bit of news is that Chloe, along with other members of her school and various other schools in the area, have been chosen to make up a choir for the new series of The Choir going out next year. She is being filmed lots and is so excited; she loves to sing and had to go through an x factor style audition to be selected.

Health wise everything is as it ever was, we just take it day by day. Her flu jab is the end of October and check up is in December.

Update 2nd May 2008

There isn’t much to report on the health front, but thank you so much to everyone who has sent clip on earrings to Chloe – she is so very happy with them!

Update 3rd March 2008

Chloe had her check up and although she is doing ok right now and they are very pleased with how she is coping, the deterioration in her heart has started and now we start the hopefully years long road to her transplant, but sadly it means she is going to slowly get sicker and sicker. We are taking all the precautions to slow down the deterioration – no exercise at all, no more dancing, or anything that will basically tire her out. She is coping ok with the news, just very disappointed, as you can imagine. She also asked her doctor if she could get her ears pierced and they said no, so we have been trying to find pretty, girlie, clip on earrings. We’re not having much luck, so if anyone knows where we can find some, please let us know!

Update 3rd December 2007

Unfortunately we were burgled on November 24^th and Chloe lost most of her dvds, cds, her playstation2 and her nintendo ds and games. So, the excitement of the Christmas build up is tarnished right now.

We are going to the Roald Dahl museum though on December 11th. Then we are going to Butlins in Minehead for Christmas which will be lots of fun.

Chloe has a check up on December 13th; we will let you know how it goes.

Update 30th October 2007

We went to the nickelodeon kid’s choice awards and they put us at the side of the stage where all the acts came off, so we had a great view and lots of waves from people. Chloe and Harry from McFly enjoyed much flirting, waves, blown kisses and held hands as he waited to go on stage. That’s my girl!! The best part for her though was meeting Josh Peck from her favourite tv show Drake and Josh. He came off stage and walked past her, then turned and came back towards her. He knelt down in front of her, held out his arms and she sat there completely shocked for a few seconds, then leaned forward and he picked her up out of her wheelchair and hugged her tight. He then chatted with her for a few seconds, there were more hugs and then he put her back. As he walked off she looked at me and opened her mouth like a goldfish, then started crying! She was just completely overwhelmed by the experience, but i didn’t tell you that part shhhhh! She met the Harry Potter cast, Shayne Ward, McFly, and all the stars from nickelodeon tv. The only sad part is we weren’t allowed cameras and we kept to that rule. It’s a shame the various teenage girls who hounded McFly towards the end didn’t – they fell over Chloe’s chair, stood in front of her and didn’t care one bit when we asked them to move, but that didn’t diminish what was an amazing day out. The children even got goody bags and glow sticks etc!

Update 8th October 2007

Chloe is doing well and enjoying being back at school. She has a check up in December and i will be able to update more then.

We are going to the Nickelodeon Kids Choice Awards on October 20th after Alex won tickets. We are very excited!

Update 22nd April 2007

As some of you may know, Chloe is in hospital at the moment and is really poorly with a viral infection (vomitus maximus) and her heart wasn’t really coping with the strain of it all.

Update 2nd March 2007

Chloe has had to give up both her dancing classes, she tried so hard but in the end it all got too much for her to cope with. She is very, very depressed at the moment. She is starting to realize that she isn’t supergirl, and that her illness seriously does have its limitations. She is starting to question everything now, and is at a low point.

Update 25th February 2007

Chloe was finally well enough to start dance classes for the first time in her life. Thank you for all the nice messages congratulating her; she loved it but has now had to stop as it was too much strain on her body. She is very upset about it and for the first time in a few years feeling very depressed as the reality of her illness hits.

Update 4th December 2006

Chloe finally got her Flu jab after a big argument with our local GPs saying they were not doing them until January. Chloe’s wonderful CLN got on the case and she had it done in November and was very brave.

Update 31st October 2006

Chloe is feeling much better now and is back at school.

Update 14th October 2006

Just to let you know Chloe isn’t doing so well at the moment. She caught a sickness bug about 2 weeks ago and it has really knocked her back. We were in hospital for a few days and she is allowed home on confinement. She isn’t eating at all and drinking only what she needs, in order to stay out of hospital. The hospital thinks that her aspirin is beginning to irritate her stomach and have put her on omeprazole to help it. So she is very poorly at the moment and is confined to her bed and also the sofa for a couple of hours a day where she spends most of her time watching high school musical (her new favourite thing ever) or sleeping.

Update 1st October 2006

A special mention goes to Hayley this month, who even with her studies, writes to Chloe every week without fail and Chloe loves her letters.

Update 29th July 2006

We are going on holiday on August 5th, first holiday in 3 years, Chloe is finally well enough to go and we are so excited!

Update 18th June 2006

Chloe had an excellent birthday! She got a Furby baby, The Bratz Rock Angels Cruiser, more bratz dolls than my fingers could handle opening, lots of glittery stuff and money which she spent in the local toy shop with scary speed on a Furby Mummy, a Tamagotchi, a Bratz bop it game, a golfing set and a skipping rope. Thanks to the post pals people who sent some lovely cards.

The day after that was her cardiac check up and after her scary blue incident a few days before i wasn’t expecting good news, but luckily, all looks good. The flow in the heart is good and there are no blockages in the Pulmonary Arteries, which means the new anticoagulation therapy is proving effective. She has gained 3lbs in 6 months and they put her medication up accordingly, but the best bit of all was that her sats were at 96% (the highest ever without oxygen) Her next appointment is in another 6 months time.

She has just discovered the TV show Drake and Josh and it’s her new favourite show and Jesse McCartney is her new favourite singer.

Update 6th June 2006

Chloe woke up in the night and vomited all over me. She was breathless and hot, so I put her fan on in her room and slept in with her to monitor her breathing. When she woke up this morning she resembled a bottle of blue WKD so i checked her sats and BP. Her sats were a paltry 24% hence why she was so god damn blue and her BP was a little low but that was expected with her sats so low. Not to bother, I’m used to this! So out came her little oxygen tank, i made a call to the Hospital, who told me to give 2 hours on 100% oxygen then the rest of the day at 50% oxygen until her sats were at her normal 80% The people in the oxygen department brought me another 2 little tanks (they are little so Chloe can move about with them) She had her 2 hours on 100% and the blueness subsided enough for her not to look like a smurf!

Its Chloe’s birthday tomorrow, she will be seven. Seven i ask you!!! Who’d have thought it? Two years ago in august her doctors said to me, Carol, its time, she is slipping away, we think we should let her go peacefully, she has suffered so much. I agreed, and we sat and we waited and… she got better! Doctors ate their hats, nurses rejoiced and Chloe wondered what the fuss was about.

I think that’s the first time that’s happened to us, nooooooooooooo actually that’s about the 4th time since she was born! Got to admit though, that time was the hardest. And now 2 years on, she is 7, and doing pretty damn well if i say so myself. We shall have a good day, I’m so so so proud of her!

Update 31st May 2006

Chloe has a cardiac check up next Thursday, and it’s her birthday next Wednesday. I shall update you all to let you know how they went soon.

Update 28th April 2006

Chloe was chosen as her schools May Queen, and was crowned today. The other children did dances and entertained her. They did maypole dancing, which was amazing to watch. It was very sweet to watch the royal procession, with Chloe escorted by Robin Hood, also known as Brendon.

Update 13th March 2006

Chloe is laid up with the Flu, it always knocks her hard, and we usually end up in hospital at some point. She has her flu jab, so the strain is a lot less than it would be, but she doesn’t have the immunity to fight the bug, so she is confined to bed, and probably will be for at least a week. We are trying non hospital admittance this time. I’m being very strict on fluids, not so much food though, who wants to eat when you’re ill?

I had just started decorating her room for her – it’s typical! I’ve moved her into my room for the time being though so I can get it done.

Update 3rd March 2006

She is losing weight, dropped from 21kg to 19kg again in about 3 weeks, so her calories have been upped and she has to start having the powder in her juice again. They are saying if she carry’s on dropping, it’s the tube again.

The school is being great and the kitchen are giving her extra cheese and crackers and doing full fat versions of the food, which is such a load off my mind with all this health kick in schools, which obviously is really good, but there are some exceptions and Chloe is one of them.

Update 11th February 2006

This week Chloe made the front page of the local paper, to promote CHD week and post pals.

Update 27th January 2006

Just wanted to say a  huge thank you to all who sent cards and presents to Chloe in December and over Christmas, i’m trying to get round to emailing everyone a thank you letter from Chloe, but there are so many people! Chloe was over the moon with everything she got, and I have been truly stunned by people’s generosity.

Update 15th December 2005

Chloe had a cardiac check up today, and for the first time ever it was all good.

Her heart functions are stable, there is zero fluid in either chest cavity (yup I said ZERO yaaaay) and her sats were at an all time high of 90% and she has gone from 19 kilos to 21 kilos in a year, not much, but for her it’s up and that’s amazing.

They plan on upping her medications on her next visit, which will be in a record 6 months time!!! Never had an appointment so far away before.

They think she needs to see the respiratory doctor again for her asthma, to discuss the possibility of steroid inhalers now, as the salbutomol and budesonide isn’t enough to stop an attack from starting, if that makes sense. The only drawback with steroids is that it brings a possibility of heart failure in cardiac kids if over used, but we shall cross that when we come to it. For the moment I’m revelling in the happy.

Story written 2006

Chloe was diagnosed with ALL on the 20th of May 2005. Five weeks previous to this she had woken in the middle of the night screaming with pain in her lower back, which was very frightening, and so we took her straight to A&E. They gave her lots of pain relief but were unable to find a reason for it so we were sent home. We made several return trips to A&E over the next few weeks as Chloe was clearly not right. Normally a really happy and bright little girl, she was often in pain, tired and general not herself so eventually she was admitted onto the children’s ward for blood tests. That evening the consultant led us away from Chloe to a private room to tell us that they believed Chloe had leukaemia and would be transferred to London for further tests to confirm this on Monday. It was impossible to describe the devastation that we felt – it simply breaks your heart. We hoped that they could be wrong and it was an agonising wait until the Tuesday for the diagnosis to be confirmed.

Chloe started chemotherapy treatment immediately and the nightmare of what was ahead really hit us. To hold your sobbing child while needles are inserted and general anaesthetics given, to try to force her to take endless tablets and to simply try to explain to your beautiful little girl why all of this is happening to her is horrifying.

But Chloe is truly amazing child and her strength and determination have amazed everyone who knows her. She tries very hard to be brave, even when she is very scared and we are so proud of her. Five weeks after her diagnosis, having had a lumber puncture, bone marrow test, portocath fitted and chemotherapy four days beforehand, she took part in cancer research race for life and managed to walk 1KM before we carried her the other 4KM to the finish. She was adamant she wanted to take part, no matter what we said, and we know that it is this stubborn determination that will get her through this.

She has had a traumatic nine months, including spending Christmas in hospital with pneumonia, and will not finish treatment until September 2007. Despite all this she is still full of smiles and giggles on good days and brings joy into the lives of everyone she knows.

Story update 2007

Chloe joined postpals in Feb 2006 and at this time had been receiving various forms of chemotherapy treatment since May 2005, when she was diagnosed with leukaemia. She has had many ups and downs over 2006 which have included hospital stays and the terrible side effects that come from chemo but she continues to amaze everyone who knows her with her courage and determination to live life. She has faced so much, and continues to do so but never complains. She is a very special little girl who will always bring a smile to your face.

Update 17th February 2008

First of all I have to apologise for the delay in updates. As usual time just runs away!!

Chloe and Charlie had a lovely Christmas and many, many thanks for all the wonderful cards and gifts that they received. A special thanks to Liz Cook, Jane and Kat, Jenny, Julie, Viks and Hayley. The children were thrilled with everything they received and so much thought had obviously been put into what was sent.  

January has been a bit of a low month for Chloe as she has struggled to recover from the bug she picked up just before Christmas but is now bright and well. She is about to begin her childhood reimmunisations (more needles!) but it is essential that these are done.

It seems only right that at this time Chloe should now become “moved on”. She has loved being part of Post Pals and we can never thank people enough for all they have done for her and Charlie. So many people have taken the time to lift her spirits on darker days and I hope they know how much that has meant. Every card, letter and postcard has been kept and she has a very impressive box of them. I hope that we have made some friends for life through Post Pals!

She has now been chemo free for more than six months and, as each day passes, we see a little more of the little girl she was before leukaemia became part of her life. She is changing in appearance quite dramatically – gaining height and losing the steroid weight, but in character she continues to be stubborn and determined, taking on too much to the point of leaving herself exhausted, but we gave up trying to stop her a long time ago!! She is a girl who knows her own mind and who are we to tell her otherwise!

Thank you so much to everyone who has been part of Chloe’s journey.

Update 21st December 2007

We would like to wish all the wonderful Post Pals team, the Pals and families and all the kind people who send smiles to Chloe and Charlie, a really wonderful and peaceful Christmas and a happy and healthy new year.

Chloe has had a nasty bug this week (which we now all have) which was difficult as we were at Euro Disney! However, with the help of paracetomol and Chloe being a trooper, we still had a lovely time and hopefully we will all be fully recovered by Christmas.

The children are getting excited, especially with the arrival of post pals gifts and cards and they are all under the tree ready for the big day.

Christmas Day will mark exactly five months since Chloe’s last chemotherapy and, although we still worry, it is wonderful for her to be able to fight off these bugs on her own with no hospital involved!!

Update 3rd November 2007

This month we have really noticed an improvement in Chloe’s energy level, which has been wonderful to see. We took the children to the Science Museum/ Natural History Museum and then on to Hyde Park and at no point did Chloe show any signs of being tired or complain of pain in her legs. It sounds like a very small thing, but for such a long time any kind of activity like this would have reduced Chloe to a wheelchair or being carried. Darren and I sat in the park at the end of the day watching the children play and it really felt like a turning point and we both felt emotional. We have our Chloe back and we hope so much that her life will now be the same as any other 9 year old, she so deserves it.

The Pride of Britain Awards were simply amazing and Chloe did so well. It was a very daunting experience for her going on stage in front of all those people but, anyone who saw it, will have seen Chloe as she pretty much always is, giggling!! It was three days full of wonderful memories and a truly surreal experience.

Thank you so much to post pals for always being there to support Chloe. Special thanks to Katie for the beautiful fairy book, I can’t imagine how long it took to make! Thanks also to everyone who has sent congratulations cards and messages to Chloe. Thanks you for my parcel too, which was a complete surprise, and very, very thoughtful.

Update 8th October 2007

Chloe has been generally keeping well over the last month apart from the dreaded skin problems. Two weeks ago she had the operation to remove her portacath so she is finally needle free. It is fantastic to see her with energy and enjoying life.

We have had an amazing secret for the last month and are finally able to say that Chloe has won a PRIDE OF BRITAIN AWARD!! We are off to London in a couple of hours for three days and are all very excited (and very nervous!) Chloe was chosen as the Fundraiser of the Year and we are so proud of her. It is not really about the amount of money that she has raised, but how determined she was to take part in Race for Life twice despite how ill she was. The awards will be shown on ITV on Wednesday 10th October at 9pm and I think there will be a write up in the daily mirror in the next couple of days.

A huge, huge thank you to everyone who continues to support Chloe, Charlie and us and we will be thinking of all the children at Post Pals when Chloe receives her award.

Update 24th August 2007

We have had a pretty busy summer since Chloe’s treatment ended, so apologies that Chloe is still sending birthday thank you’s out rather late!

The last day of treatment coincided with the last day of school, which was also Charlie’s last day at primary school. He won the Head Teachers Award, which is the best award the school presents to a year 6 pupil for outstanding effort and achievement and his head teacher said some really lovely things about him. It was a very emotional day, all in all, and we were just full of pride for both of our children and what they have achieved, despite all they have had to cope with over the last two years.

The first week of the summer holiday we spent at Crowhurst Park near Hastings and had a lovely relaxing week. It is a really beautiful place and there are plenty of children there, so Chloe and Charlie had a great week building dens and having mud fights (hence, lots of clothes went in the bin!!) They had so much fun that it was impossible to be cross and it was just lovely to see them having fun together.

The second week Chloe and I went to Butlins with my family, as Charlie was at camp with the scouts for the week and Butlins is Daddy’s worst nightmare! We had a fun time dancing etc, having very late nights and spending Daddy’s money! We were truly shattered by the time we got home!

Chloe was definitely on a high for those first two weeks energy wise, but she is suffering very badly with a “coming off chemo rash” all over her face and upper body. Along with that, she has very bad infected molluscum on her face too. Bless her, it is all very sore and does not look pretty. She has over 80 molluscum on her face alone. We have been at the Marsden this week to see her consultant and a dermatologist and have come away with a very large bag of medications to try and help, but it could be months before all this settles down. She has also had an eye infection which left her with swollen eyes that were completely bloodshot, so we are applying eye drops too. Of course all this is minor compared to chemotherapy, but it is frustrating as it is so visible and means Chloe has to put up with lots of comments from other children. I know she is going to have a tough time when she goes back to school with this.

Life feels very strange at the moment as we are all adjusting to life without the chemo and we are full of mixed emotions, but we are just taking each day as it comes. As always, we are so grateful to everyone who has sent cards and gifts to Chloe and Charlie. The sunflowers from Kat were absolutely beautiful and Chloe wore her “I kicked cancer’s butt” t- shirt with pride and sang the “no mo chemo song” down the phone to her auntie and cousin! Thank you Viks.

Update 21st July 2007

Chloe was discharged from hospital in time for her birthday, which was a lovely day. We went to London to the Amazing Great Children’s Party which is put on by Children with Leukaemia and Chloe and Charlie had lots of fun. The Race for Life was postponed because of the weather (no surprise!) so Chloe had a couple of extra weeks to recover from her hospital stay and her LAST intravenous chemo before she took part, which was better for her.

We did the Race last Sunday and she was fantastic. As she started the Race as Cancer Research’s guest of honour, we were at the very back of 2000 women, but there was no way Chloe was finishing last this time! I think excitement and adrenalin kicked in and she was literally running it, weaving her way through all the people. She was absolutely shattered at the end but very, very pleased with herself, especially as she crossed the line before mummy and her aunties! Three days before this she was at the Marsden having her last bone marrow aspirate and lumbar puncture so it really was a huge effort for her. She has raised lots of money for Cancer Research and we are still collecting it in so a huge thank you to anyone who sponsored her. She really did earn every penny.

This coming Wednesday, the 25th, will see Chloe take her last dose of oral chemotherapy and on Thursday we will be at the local hospital for her last pentamidine, which will end her treatment. It has been a long, long journey but throughout Chloe has been an absolute star. Her consultant has discussed many scenarios of what may happen now with us and I think it will be a long time before we truly relax with Chloe, if ever, but we are excited at the prospect of seeing our beautiful daughter recover from what her body has been subjected to, and to have the luxury of simply being like other children again. For Chloe it will mean no more weekly blood tests (after more than two years she is still terrified of the needle), no more tablets to swallow everyday that stick in her throat, no more intravenous chemo that makes her so ill that she can’t go to school and do the things that she loves, like ballet and no more hospital stays. She will be seen every six weeks for check ups and she is also having an echocardiogram in August to check for any damage to her heart that the chemo may have done. At some point she will also have an operation to remove her portacath but there is a waiting list for this so we do not know when yet!

Thank you to everyone at postpals who have supported Chloe, Charlie and us through all of this. Often, on the days when we have all been struggling, a card from someone we do not know has arrived and it has made such a difference to know that there are so many people out there thinking of Chloe and wishing her well.

Update 30th June 2007

Just a quick update to say that Chloe has been in hospital since Wednesday spiking temperatures of 40.7. They are going to let her go to the Race for Life tomorrow assuming her temperature stays down and we are hoping to be discharged Monday. It’s so annoying to be so near the end of treatment and still Chloe is putting up with so much.

Update 12th June 2007

Chloe is having a rough time since her last iv chemo last Tuesday. By now we would expect to see her picking up but this morning she woke up and was violently sick. She has been clammy with shakes, but her temperature has stayed normal so we are assuming she has picked up something on top of the side effects of the chemo. She had her bloods done today, as she does every Tuesday, so I am hoping she will not be neutropenic. If she were, the hospital would most likely want her in to have a look at her, which tends to turn into “we’ll keep her in to keep an eye on her”.

We are so near the end of treatment now, only six and a half weeks to go, but in truth it is hard to feel any sense of excitement about this at the moment. Chemotherapy is like a monster that you have to inflict on your child in order to fight off the bigger monster that is cancer. It’s a hard place to be, no matter where you are in the journey.

Thank you so much for all that Post Pals does. We have been privileged to make friends with some wonderful people through Post Pals and their support of Chloe, Charlie and ourselves has been amazing. Kat, you truly are a star. Viks, Kate, you work so hard for all the children and to everyone behind the scenes; we are forever indebted to you for bringing those smiles to Chloe, especially on the days when nothing else could.

I’d also like to say thank you to Jenny, Hayley, Katie, Tara, Judith, Leslie and Susanna – thank you all for the sunshine you bring to Chloe’s cloudy days. She and Charlie get so much pleasure from all your kindness.

Update 16th May 2007

Chloe is off school at the moment due to the effects of iv chemo and steroids. She told me she feels so fed up and as steroids cause depression, I suppose this is what she is experiencing, along with the pains and aches of chemo.

She has been asked by Cancer Research UK to be their guest of honour at our local Race for Life in July and start the race, which she is very excited about. She will also be taking part with a little team, although it will definitely be a slow walk rather than a race, as 5km is a long way for Chloe. Last time Chloe took part in Race for Life, it was five weeks after her diagnosis and turned out to be a very traumatic experience – there is a full story on Chloe’s sponsor page if anyone wants to read it. The address is www.raceforlifesponsorme.org/chloesteam. She has been in the local paper this week to get publicity for Cancer Research and hopefully some sponsors. She totally takes it in her stride (unlike mummy, who gets very nervous). Fingers crossed that she will be well on the day.

Thank you so much to Jenny and Kat, you are both so kind. Also to Hayley, who takes so much time to write letters to Chloe. Thanks to Kate for Charlie’s Dr Who card, which he is mad on and thank you to everyone who takes the trouble to send emails and cards – it is always appreciated. Also, thank you to whoever sent me the gifts from John Lewis – there is no name with them, but it was lovely and totally unexpected.

Update 3rd April 2007

Chloe has had a good month managing school every day for the last three weeks. She is still having lower doses of chemo which is probably why she has more energy than normal, but it’s lovely to see her being able to swim and go to ballet, which she absolutely loves. We are now counting down the months to the end of treatment!!

Update 4th March 2007

Chloe spent a week in hospital this month on iv antibiotics. She took oral antibiotics for ten days but the day after they finished she spiked a temperature and was clearly not well so was admitted. She was also in extreme pain this month from the iv chemo and so was given morphine in hospital to cope with it.

She has been back at school this week and is bright despite very low blood counts. Her counts are so affected by the oral chemo that she has had many weeks now where she has been unable to take it, which is a concern, but we are at the Marsden this week and so will be discussing this with her consultant.

Special thanks to Jenny, Kat, Kate, Hayley and Julie – your kindness is always appreciated.

Update 13th February 2007

Chloe got off to a pretty bad start in the New Year by catching chickenpox. So much for having immunity to it! She was in hospital for six days on the iv aciclivor that they give to reduce the effects and then had it orally for five days as well. As her temperature was spiking they also gave her iv antibiotics. To add to the stress, this all happened a couple of days before Charlie took his 11+ so he was a very upset little boy, coping with exams, his mummy at the hospital and a sick sister. Between Darren and I, we juggled hospital overnight stays to try and reassure Charlie and show him he is just as important as Chloe, but it was a very difficult week emotionally to say the least.

Perhaps this is not the place to say it, but I’m sure that any parent who has a child with cancer that also has other children, knows the awfulness of feeling that you are letting your healthy child down by focusing so much on your sick child. It is very hard to not feel that you are failing them, and yet, you have absolutely no control over the situation. I think that week we felt it as a family more than ever.

At the moment Chloe has a chest infection and is on oral antibiotics. Her blood counts were better this week, so despite spiking temps, we are still at home and hoping to stay here!!

Update 31st December 2006

Chloe managed to keep well for Christmas and we had a lovely time. The children were totally spoilt with lovely gifts from post pals and family. We had a slight hiccup when my niece came out in chicken pox three days before Christmas meaning Chloe had to be tested for antibodies, as they had been together all week. Chicken pox is a huge issue for immuno suppressed children, but thankfully Chloe does have antibodies, saving her from an unpleasant injection. It meant not being able to spend Christmas with family, which Chloe was upset about, but at least she was well. Hopefully as she has antibodies she will not come out in chicken pox but I have been told this is not a guarantee, so we will soon know by the end of this week.

Chloe had iv chemo the day after boxing day (postponed from the previous week to try and keep her well for Christmas) and has had a rough week with side effects but it is one more dose to cross off!!

We wish everyone a happy new year and say a MASSIVE thank you for all the lovely things the children received. Many thanks to Judith, Julie, Peter, Jenny, Viks, Hayley, Georgie’s Fund and a very special thank you to Kat, who was the children’s elf. The parcel she sent was amazing and so thoughtful, especially as Kat is not well herself.

Update 3rd December 2006

Chloe came out of hospital after seven days and, touch wood, has got through this week with no cough or temperature for the first time in nearly three months! She had iv chemo on Tuesday, which had been postponed from the previous week because she was too ill, but she has really fought hard to get to school this week to not miss out on any activities. We will be at the Royal Marsden Hospital on Wednesday for Chloe to have a lumber puncture and intrathecal chemo and to see the consultant.

Chloe and Charlie are getting very excited about Christmas and we hope so much that she will stay well this year as last year was so awful, with Chloe in hospital with pneumonia for the whole of Christmas.

Thank you so much for all the lovely post that the children continue to receive. Chloe has had so much support through postpals and, as her parents; it lifts our hearts too to know there are so many kind people wishing her well. Thanks to Amy (Jack M’s mum) Hayley, Jenny, Julie, Alan, Katie, Laura and Chris, Viks, Kate, Kat, Cherie and all those special people who make a difference, and huge thanks to Becky Basanda who sent an amazing parcel from America and Glenda and the lovely children, whose gifts arrived yesterday, causing much excitement.

Update 21st November 2006

Chloe did fantastic in her Gala – 2 silver medals and 1 bronze. She was amazing and really deserved to do well, especially as she is now back in hospital with a u.t.i. and chest infection, spiking very high temperatures.

Update 18th November 2006

Chloe was in hospital last week for a few days with a temperature. As her neutrophil count was very low i.e. she has no immune system, she is given intravenous antibiotics to fight the infection that her body can’t. In herself she has remained quite bright, but still has the dreaded cough which everyone seems to have at the moment, that just will not go. Chloe would like to write something herself so here it is!

Yesterday i went to my cousins birthday party at the captin digby and i dressed as belle. Tonight i am going to swim in my swimming clubs gala and these are the races i am doing: 25m backstroke, 25m freestyle and the 25m family race which i am doing with my brother and my daddy but mummy is going to watch and cheer me on. Thank you to everybody who sends me things and who e-mails me. I am making thank you’s to send.

Chloe is unable to swim very much anymore due to her low blood counts and often being unwell but despite this she wants to swim in the gala. She knows she is likely to come last but is determined to have a go and this says so much about Chloe. She is such a fighter and we are so proud and inspired by her determination.

Update 7th October 2006

Chloe has had a very mixed month health wise. She has had some kind of bug which made her very sick and then in the last week was not great with her iv chemo and had bad side effects from coming off her steroids. I know when she is feeling really bad as she generally never complains, but last week when she was in a lot of pain she said “its not fair mummy”. This is about the most you will ever hear her say when she is really fed up with it all. Thankfully she seems to have improved in the last few days and the smiles are back.

Her brother has been unwell over the last couple of days with a high temperature, so we are crossing everything that she doesn’t catch it, as it would mean hospital for her. She already has a very nasty chesty cough. They have only been back at school 3 weeks and already the bugs are about!!

On a much brighter note Chloe did have a pretty amazing experience last weekend as she got to meet Kylie Minogue!! She entered a competition on Newsround to go to Kylie’s book signing in Oxford Street and she won!!!! They had 100 places so she was very lucky and it had nothing to do with her illness. She was not feeling too well but there was no way she was not going! She had her copy of The Showgirl Princess signed and a photo with Kylie. Kylie told her she looked very pretty, which was nice. As Kylie was diagnosed a couple of weeks before Chloe it all felt a bit ironic them meeting. The first time Chloe had to have a blood transfusion, a couple of days after finding out about the leukemia, she was absolutely distraught and terrified. To try and make it better I said “you never know, it might be someone famous blood” and she said “as long as it’s not Kylie’s as she’s got cancer”. At that time she knew that she had leukemia but not that it was a form of cancer. It was a heartbreaking moment for me, said in such innocence, so it was lovely to see them together 17 months later. It’s funny how life works sometimes.

Thank you to all those special people who have sent cards, letters, postcards, emails and gifts to Chloe this month. I apologize if she has not gotten back to you yet, especially to Hayley, who takes so much time and effort with her letters, it has been one of those months!

Update 12th September 2006

Chloe has had more energy over the summer holidays than we have seen her have since before she was diagnosed. It has been so lovely to see her able to ride her bike and really have fun with friends. We do not know if this is because she has not been at school or whether her body is maybe coping with the chemo better, but whichever, it has felt like we have had the “old” Chloe back.

The intravenous chemo and steroids are still making her feel bad but this month the effects only lasted about eight days, which is a big improvement. We went to Wales at the end of August and had a really great holiday. This week she is due in London for her chemo via lumbar puncture and then her next IV chemo is on 26th September, so fingers crossed she will cope well again. She is such a star; we are incredibly proud of her.

Thank you so much to everyone who has sent a card, letter or gift to Chloe this month. Thanks to Hayley for her lovely letters, Julie and Alan, Viks, Kat, Katie, Nicky, Kate, Judith, Becky, Charlotte and Maddy, Cherie and all the people from the Cardmaking Forum Raker who have sent such beautiful cards. They must have taken ages to make. Many thanks also for the post that is sent to Charlie.

Update 4th August 2006

Chloe received so many lovely birthday cards and gifts. Special thanks to Julie, Nicky, Viks, Kate, Cherie, Laura and everyone who takes time to write to her and Charlie. She is still sending her own thank you’s but likes to make them so I’m afraid it is a slow process!

We had a really lovely time at EuroDisney and Chloe was treated like a princess, thanks to the Christian Lewis Trust, who made the arrangements for us. They make the hotel booking and arrange a special blue badge for Chloe that means we did not have to queue for any rides and all the staff go out of their way to give her (and us) a truly special holiday. It was very emotional at times, and difficult not to worry, especially when Chloe was very sick on our second day, but we are so glad that we decided to go. It was wonderful to see her so happy and all the characters made a bee line for her, cuddling and blowing her kisses. Mary Poppins, who Chloe loves, gave her a ‘special’ nod and Minnie Mouse twirled with her and made her feel so important in front of all the other children. It truly is a magical place.

Unfortunately reality is never far away and the iv chemo was given the day after we got back but we had an extra, extra special treat that night as we took her to see Westlife, and thanks to her Uncle Paul, Chloe was invited backstage to meet them!! All in all it was quite a week.

The chemo did it’s usual, making her feel so bad after, but for Chloe now it is just her ‘normal’ to feel so ill. That, in itself, makes me want to cry but it certainly doesn’t beat Chloe. She shows us month on month how strong willed she is and she always amazes us. This month she was awarded the endeavor award at her ballet awards night and it was lovely to see her collect it on the stage. I don’t think she realises how much people admire her, to her she just gets on with life, no matter what that brings.

Update 2nd July 2006

Chloe has been much the same this month. She is unwell and off school when she has the intravenous chemo, and then after about seven days she starts to feel better. She suffers a lot with headaches and nausea throughout the rest of the month, but the anti sickness medication helps a lot. Unfortunately, the doctors have said that all children react differently with the side effects of treatment and Chloe’s headaches and nausea are her body’s reaction.

It’s very hard seeing her not herself on so many days, but she tries really hard to be a normal seven year old in public and put on a brave face. She is very conscious of being different to her friends in what she can do physically. It is at home that we see how hard a toll the treatment takes on her, but she is learning to try and save her energy for the things she really wants to do.

We are going to Euro Disney tomorrow for four days and are crossing everything that she will stay well. She and her brother are excited and she will be celebrating her 8th birthday while we are there. It will be a very emotional holiday I expect!

Many, many thanks to everyone who continues to send Chloe such lovely cards and gifts. It is obvious that people make such an effort and your kindness is so appreciated by us all.

Update 6th June 2006

Chloe has been unwell with the IV chemo this month and this does seem to be forming a pattern now. It is given every 4 weeks and she has to take steroids for a few days after. The combination of the two is taking it out of her for about 7-10 days. Her vision is being affected, which we will query at the end of the month when she is due at the Royal Marsden and she is very tired with bad nausea and headaches. For the other two weeks she is relatively ok and able to go to school. Thank you to everyone who has sent Chloe post, it always brings excitement and a smile!

Update 1st May 2006

A huge thank you to everybody who has taken the time to write to Chloe. It’s been very exciting for her and has given her lots of smiles. We have been truly amazed at how kind so many people have been and special thanks to Julie, Post Pals, Kate, Cherie, Nicky – you are all wonderful!

Chloe has now gone into the maintenance part of her treatment which will last for the next 16 months. This consists of:

• Daily chemotherapy tablets
• Weekly another type of chemotherapy tablet to protect her brain
• Weekly antibiotics
• Weekly blood tests
• 4 Weekly intravenous chemotherapy
• 4 Weekly 5 days of steroids
• 12 Weekly bone marrow aspirate to check levels of disease
• 12 Weekly lumbar puncture to administer chemotherapy

Unfortunately all of these bring lots of unpleasant side effects but Chloe is very determined to do as much as she possibly can. She has been able to go to school in the last couple of weeks which really cheered her up and despite getting physically tired very quickly, has even managed to go swimming and to ballet. She has an amazing spirit and we are so proud of her. She has loved all her post and emails and is very excited when she receives something so thank you so much to everyone who has taken the time to contact her!

Update 2nd March 2006

Thank you so much for the post that has been sent to Chloe. She has been in hospital for a few days and it was lovely for her to receive the cards. It has caused quite a bit of excitement and I just wanted to thank you for bringing smiles to her days.