Charity Number: 1137175

Maya N

Story written 2024

Maya unfortunately relapsed with Neuroblastoma after being stable for 4 years and 10 months. It has now spread to her skull, spine, pelvis, thigh bones and arms.

Update 31st August 2026

Maya worked hard in neuro-rehab but had to leave early due to severe pain. Scans have shown new Neuroblastoma areas. The Neuroblastoma is currently in her skull, chest, ribs, liver, spine, right upper arm and both thigh bones,

Update 2nd June 2026

Since Maya was discharged home on 30th March after five months at GOSH, life has become a constant battle to secure the equipment, services and adaptations she needs simply to live safely and with dignity.

Our days have been consumed by appointments, assessments, phone calls, emails and endless advocacy.

Since coming home:

Maya finally received her wheelchair after three weeks. We have had a couple of home adaptation assessments. Hoist installation failed due to contractor errors. We are still waiting for a suitable WAV (Wheelchair Accessible Vehicle). Maya still sleeps in our living room. She still has no adapted bedroom. She still has no suitable bathing facilities. These are not luxuries. They are basic needs for a disabled child.

Despite surviving severe complications following CAR-T therapy, despite months in hospital and despite everything cancer has already taken, Maya continues to face Neuroblastoma.

On 7th May, she underwent radiotherapy at The Royal Marsden.

Sometimes we wonder how much one child can possibly endure. On 1st June, Maya begins intensive neuro-rehabilitation at The Children’s Trust in Tadworth.

She desperately wanted to remain at home, so we will travel approximately 130 miles every day, five days a week, for 12 weeks.

Update 1st of May 2026

Maya has a new area of active Neuroblastoma. When it was first found it was 7mm and on the most recent scan it was 12mm. It’s between T9-T10 on her spine. Chemotherapy isn’t an option but they are discussing options.

Update 31st of March 2026

Today Maya went home after 5 long months in Great Ormond Street Hospital. The good news is her Neuroblastoma is currently stable and doesn’t require treatment but she has suffered a lot of damage from the CAR-T cell therapy. She is still herself though and is waiting for a bed at a brain injury rehab place. Until the bed becomes available Maya and her family will be enjoying some family time at home. Thank you to everyone who sends Maya and Lola post.

Update 15th November 2025

Our beautiful Maya has reached one of the most difficult parts of her CAR-T cell therapy journey. Over the last week or so, she developed severe ICANS (Immune effector Cell–Associated Neurotoxicity Syndrome), a complication where the brain becomes inflamed from the powerful immune treatment that is fighting her cancer #neuroblastoma.

Because of this inflammation, Maya has been experiencing:

•confusion

•struggling to speak

•tremors

•agitation

•seizure-like jerky movements

•and very long periods of reduced level of consciousness

Watching Maya like this has been the most painful thing we’ve ever gone through as parents. Our little girl, who was laughing, talking and singing only a little over a week ago, is now fighting silently through something no child should ever face.

When Maya was in ICU, she was surrounded by machines and wires, receiving:

•maximum-dose steroids (Dexamethasone initially, now changed to MethylPrednisolone)

•continuous Anakinra

•Tocilizumab (several doses given) and •Siltuximab (one-off)

•Rituximab (one-off to “switch-off” the Car T cells

•antiviral and antifungal protection

•IV fluids and potassium

•seizure prevention (Keppra or Levetiracetam)

•round-the-clock monitoring

Maya is on the highest level of care, with every treatment available to calm the inflammation in her brain and stabilise her body.

And although this stage is terrifying, we are holding onto the hope that Maya will recover from severe ICANS.

She will eventually wake up slowly.

She will start responding.

She will begin to speak again.

She will regain movement and strength.

We had been warned that recovery is NOT instant — it often takes several weeks, sometimes months — but her medical team is doing everything possible to bring her back to us, step by step.

We cling to HOPE every second.

 

Update 12th November 2025

On Sunday, 10th November the first signs of neurotoxicity appeared — hallucinations, confusion, and Maya “talking” to her best friends and pets.

Terry and I were breaking inside as we watched Maya “drifting away,” her eyes rolling upwards, her body jerking as though seizing.

Terry stayed at a nearby family accommodation (a 5-minute walk from the hospital), while I stayed with Maya overnight. We agreed to take turns — one watching over her, the other trying to get a few hours of sleep. But that night, Maya’s eyes kept rolling upwards, and even when the hospital fire alarm went off, she didn’t react at all. Normally, she’d be curious and asking questions. This time, nothing.

At around 2am, as her steroid (Dexamethasone) infusion was finishing, her heart rate suddenly spiked to 172 beats per minute — and everything spiralled. I had to pull the emergency crash call button on Lion Ward — one of the most terrifying things a parent can do.

By 3am on Monday 11th November, Maya’s care had been taken over by the ICU team due to severe, uncontained side effects of her CAR-T Cell Therapy — known medically as Cytokine Release Syndrome (CRS), sometimes called “cytokine storms.”

Since then, Maya has been mostly unresponsive, with jerky movements, and she’s now in acute heart failure due to fluid buildup around her chest. The doctors are hopeful this could be reversible. Her echocardiogram on Tuesday showed her heart’s ejection fraction at only 20%, improving slightly to 30% today — a small but meaningful sign of hope.

Maya is currently being monitored around the clock by Oncology, Cardiology, Neurology, and ICU teams. She’s receiving continuous Optiflow (45L/min, 25% oxygen), high-dose Dexamethasone (steroids), Tocilizumab, Anakinra, Siltuximab (a one-off dose), Milrinone (for heart failure), IV fluids with potassium (adjusted every six hours), Aciclovir, Allopurinol, and Levothyroxine, alongside supportive medications like Paracetamol, Chlorphenamine, Clonidine, Melatonin, and Ketamine when needed.

Despite all these intensive measures, today (Tuesday, 12th November) there hasn’t been further improvement. After long discussions with her doctors, Terry and I have made the difficult decision — one no parent ever imagines making — we agreed to the doctors’ decision to switch off the active CAR-T cells using Rituximab, an antibody “safety switch” designed to destroy them.

The hope is that a small number of CAR-T cells will survive — enough to keep fighting the neuroblastoma cells, but without causing further damage to Maya’s heart and brain.

Watching Maya like this is soul-destroying.  But I’m clinging to every flicker of hope, staying positive, and trusting her team.

None of this was predictable.

CAR-T Cell Therapy was our only remaining option against neuroblastoma — a leap of faith we had to take. For now, we’re not worrying about the cancer; we’ll know more in early December when she has her bone marrow biopsy, MIBG, and MRI scans.

Right now, the focus is on saving her brain, her heart, and her spirit — bringing back our feisty, stubborn, happy Maya who sings her karaoke songs with all her heart.

 

Update 3rd November 2025

Despite being on constant treatment Maya relapses again. She is currently in hospital having CAR-T cell therapy. She has been struggling a lot with pain.

Maya is now 12 years old and has a heart full of sparkle and joy. She loves karaoke nights and singing her favourite songs at the top of her voice — music is her happy place. When she’s not singing, she’s pampering herself with a manicure, pedicure, or a relaxing reflexology or full-body massage — because feeling good matters just as much as having fun!

Fashion and beauty light her up — she adores make-up, spritzing her favourite perfumes, and browsing through the aisles of TK Maxx and Primark for cute clothes and treasures. For a perfect day out, Maya loves a round of crazy golf, a game of bowling, or a pamper day at the spa followed by a cosy stay in a hotel — with the best bit being breakfast the next morning!

She’s also a Lego lover and could spend hours building and imagining adventures — especially when visiting Legoland or Chessington, two of her favourite places. Maya loves animals too and enjoys trips to the zoo, where she lights up seeing the lions, monkeys, and penguins.

Her eyes truly sparkle during the festive season — she adores Christmas lights, Lapland visits, and all the magic that comes with them. And when it’s time to eat out, Maya’s favourites are Wagamama, Pizza Express, Nando’s, and any cosy noodle spot that makes her smile.

Maya is a girl who finds joy in life’s little luxuries, laughter in every moment, and magic everywhere she goes.

Being a sibling is tough on Lola too, music keeps her going. Lola’s world seems to hum with music. When she’s not strumming her guitar or figuring out a new tune on the piano, she’s singing her heart out at Open Mics or turning karaoke nights into mini concerts. Her love for music runs deep — it’s what makes her eyes light up when she talks about her Diploma for Music at college. But Lola isn’t all rehearsals and practice rooms; she’s got a flair for style too. She loves clothes shopping, wearing her favourite designer perfume, and treating herself to spa days and nail salon trips with friends. Whether she’s laughing with her indie bandmates or chilling with her fashion-loving crew, Lola’s figured out how to mix passion, fun, and self-care in perfect harmony.

Story written 2017

In August 2014 when Amy was 7, she was diagnosed with childhood cancer neuroblastoma. A growth attached to her adrenal gland was found after a scan to find out why she kept having water infections. More tests were done and thankfully it had not spread. In November 2014 Amy was admitted to Birmingham Children’s hospital for an operation to remove the tumour, which was successful and she recovered well. She had to have regular scans to check for any relapse.

Up until November 2016 at the age of 9 and after two years of being clear, a routine scan showed it had returned in her pelvis, and chemotherapy was to start straight away. On 19th December Amy started chemo: she is still fighting and does it with a smile.

Update 10th February 2019

Amy is doing really well, she has got to ring the end of treatment bell and is progressing well. She still visits hospital regularly and has scans done as she is a very high risk of relapse, due to not being able to finish treatment with stem cell transplant.

Update 10th January 2018

Amy has just finished chemotherapy and now is on six months of maintenance therapy and then hopefully by July she will get to ring the end of treatment bell. Amy loves receiving mail from post pals and waits most days for the postman.

Update 21st August 2017

Amy has just started her next round of chemotherapy and hopefully her last. She will be having 6 rounds, each round is five days of treatment with two weeks off in-between. She is doing really well so far after her first five days on chemotherapy.

Story written 2017

There were no signs or symptoms previously, she has always been a healthy little girl, happy, active, playful and bright – no causes for concern.

She caught a tummy bug, and it quickly spread to Mummy and Daddy, but everyone got over it and Lottie remained the same, just under the weather. She went to the childminder, and her sister mentioned Lottie’s tummy looked different that day.  Mummy collected Lottie early and went to the GP. The GP sent us to the hospital, and they did an X-ray and said Lottie had a blockage in her bowel and was most likely malnourished. Lottie’s favourite food was broccoli and sweet potato curry, she’s always had a broad spectrum of healthy foods. They then did an ultrasound….

Lottie and Mummy laid on the bed, and the ultrasound immediately showed a mass. A large black horrible looking mass. It measured 12cm.
Mummy and Daddy were told it was likely to be cancer. Within the hour we were placed in protective isolation at the local hospital and the Royal Marsden, Kings, St George’s and the Evalina were all consulted regarding Lottie’s high blood pressure and increasing abdomen.

Three days later and a transfer to St George’s was complete. Mummy and Daddy prepared for a biopsy, a Hickman line fitting and a bone marrow aspirate. Nanny slept on the floor at the end of Lottie’s bed, whilst Mummy slept in a chair and Daddy went home to look after Georgia and Jack. We were devastated, but had to remain strong.

Lottie went downhill very fast and was placed in PICU at St George’s, the mass was squeezing her lungs and affecting her blood pressure. It was splicing her diaphragm and she could no longer breathe on her own. We waited three agonising days for a diagnosis. No chemo can start until a diagnosis is reached.

On the 30th June at 1:15pm Dr Zacharoulis delivered the news. Neuroblastoma. Chemo was started that night. Immediately Lottie improved.

Seven days later she was transferred to The Royal Marsden. Seven rounds of chemo, three kidney function tests, numerous blood tests, countless nights in hospital. X-rays, CT Scans, bone marrow aspirates, general anaesthetics, NG tubes and so much more later we are fighting stronger than ever for our baby girl.

On the 25th of October Lottie had the now 3.6cm tumour removed. A gruelling 12 hour operation made successful by the amazing team at St George’s. Lottie then spent seven days in PICU, this timed sedated on a ventilator to keep her safe.

Our next steps are high dose chemotherapy, and stem cell transplant. Then comes radiation, and finally immunotherapy.

Neuroblastoma is a nasty disease, aggressive and harsh. It has a high rate of relapse and is the rarest form of childhood cancer.

Update 21st November 2025

Lottie has rejoined Post Pals as she is suffering the effects of long term treatment.

Update 18th January 2018

Lottie is now undergoing treatment in the USA. We fundraised for her treatment with Solving Kids Cancer and raised a massive £155,000 to pay for a Vaccine Trial. Lottie travels back and forth to New York with her Mummy, so she misses long periods of her time at nursery. Lottie has lots of anxiety and needs a clear routine to keep her panic levels low. She also has lots of tests, such as bone marrow aspirates, PET Scans, and Ultrasounds. She is also experiencing Hypoglyceamic episodes, which means she  needs close monitoring as they come on very suddenly with no warning. Lottie can’t tell us when these are happening so we need to watch out for any tiny little signs. Her legs are very heavy and she struggles a lot with her balancing and running – some days are better than others. Currently Lottie is in remission and the Vaccine hopefully will keep her there.

Update 21st August 2017

Lottie is now in her immunotherapy phase of treatment having undergone; surgery, stem cell transplant, radiotherapy and now immunotherapy. Immunotherapy is causing lots of pain and issues that stop us leaving the house.

I’d like to thank everyone for their lovely cards, post, stickers and happy mail, they brighten our day!

**Please do not send Theo any sweets**

Story written 2016

In July 2015 Theo was diagnosed with stage 4 Neuroblastoma. He started treatment straight away, which consisted of having a Hickman line inserted, seven cycles of induction chemotherapy, followed by surgery to remove the primary tumour.

Theo has now had high dose chemotherapy and a stem cell transplant and has just started daily radiotherapy.

Update 14th May 2016

We just wanted to say a massive thank you to all those who have sent Theo post. He loves every single one of them. He even had a lovely card all the way from Australia this week! Thank you everyone, it’s wonderful what you do for the children. So thank you all on behalf of Theo.

Story written 2012

Olivia was diagnosed with Neuroblastoma stage 4 cancer at the age of 4 after limping and a series of back pains and fatigue. She’s had the general protocol of treatment for Neuroblastoma, high dose chemo, surgery radiation, repeat chemo and transplant from the NHS at Glasgows Yorkhill Hospital and Royal Aberdeen Children’s Hospital. She then went to Germany with her family to have immunotherapy treatment and had 5 doses of the immunotherapy. Sadly whilst on this treatment Germany discovered Olivia had relapsed in her ribs so the treatment stopped.

After the news of relapse, Olivia started another German treatment called RIST therapy which is another form of chemotherapy. It hit her hard she was often hospitalised due to the side effects and infections. It helped for a few months by shrinking the tumours, but soon the tumours spread whilst on treatment so it had to stop. Olivia has since twice been to the Hufeland clinic in Germany to detoxify her body of all the poison from the treatments and cancer and have some holistic therapies.

Recent scans in March 2012 have show Olivia’s disease has spread extensively throughout the spine ribs and pelvis area including shoulder blade. Her Mum and Dad have been giving her photodynamic therapy every day along with ultrasound treatment, infrared sauna and a range of vitamins. Doctors have said that her cancer can not be cured, but her mum and dad refuse to focus on this and won’t give up on their little princess who they worship. Olivia is has a little sister Jessica 20 months old and is due a new brother or sister in September.

On the 6th of June we heard Olivia has gone downhill, she is confined to bed and feeling sad. Her parents are looking at treatment options in Mexico. Please send lots of cheerful smiles to Olivia.

Update 29th June 2012

We are very sad to say Olivia passed away this morning. She became very ill whilst having treatment in Mexico and members of the public were moved by Olivia’s story and donated money to fly her home on life support. She passed away with her family by her side.

 

Story written 2006

Toby was diagnosed with Stage 4 Neuroblastoma in September 2003. He was treated at the John Radcliffe Hospital in Oxford and had 6 months of chemo followed by surgery to removed the tumour in March 2004 when he was 13 months old. Due to the spinal cord compression caused by the tumour, Toby now has problems with his bladder and bowel and also has lower leg weakness, which means he has to use a little frame to get about. He has just had surgery to put his hip back in its socket and was in a hip spica cast for 4 weeks. He also had some tendons removed in his right foot to help it stand flatter – again due to nerve damage.

Toby has a big brother called Sam who is 7. He has had a lot to put up with since Toby was first diagnosed – this happened a day after Sam first started school. He is a lovely boy though and very thoughtful and looks after Toby very well! Although some days they do fight like cat and dog!!

All in all Toby is a fantastic little boy who doesn’t let his disabilities get him down. He always has a cheeky smile on his face and manages to wrap any nurse around his little finger!

Update January 2008

Toby remains well so we are “moving on” from Post Pals. Thank you to everyone who has written to Toby and Sam.

Update 1st December 2006

The children are getting very excited about Christmas! Thank you for all the cards this month, we have had quite a few from abroad!

Update 2nd October 2006

Toby is doing brilliantly, he is now walking without his frame (although still a little wobbly!) He has 3 visits to Oxford this month for his MRI scan on 13th, Urology dept on 11th and then Oncology clinic for results of the MRI on 26th Oct.

Update May 2006

Toby has had the “all clear” from his oncologist in Oxford who has said that it is now highly unlikely that the Neuroblastoma will return – yay! Many thanks to the Post Pals team; it really is a great thing to do.

Update May 2006

We got the results today from Toby’s MRI scan last week and they are brilliant – No Evidence of Disease!!! We are over the moon! This is now 2 years in remission from Stage 4 Infantile Neuroblastoma. He also had a good appointment with Orthopeadics and after having an Xray which showed that the pelvis and hip have healed properly, he said that we don’t need to see him for another 3 months. When we go then we will speak to the consultant about Toby’s spine as he does have a slight curvature in it, just so we know when to expect anything to happen regarding that. Then we went to The John Radcliffe for his Urology appointment and the consultant again was very happy with how Toby had been doing, I have to do some studies on him to see how much he is weeing in his nappy, then to sit him on his potty and then to catheterise him and see how much he has left in his bladder – so it is all a bit of a fiddle but it will mean we will have a better idea of what’s going on. Apparently, bladders can shrink back to a normal size so we are hoping that this has begun to happen now. So all in all a fantastic day – I cannot believe it!!!

Story written 2010

Robyn is a wonderful, cheeky, toothless 7 year old girl, who in May 2009 was diagnosed with Neuroblastoma. As with many children with this cancer, it had spread by the time she was diagnosed, so her diagnosis is known as stage 4 – high risk. Robyn has responded really well to her treatment and her primary tumour in her pelvis was removed successfully in September 2009.

Unfortunately she suffered some nerve damage in her right leg and foot (as the tumour was attached to the nerves that serve her right leg) and as a result she is still having difficulty walking the shortest distances even with the help of crutches. To explain the full horror of the treatment that Robyn has had to endure for the last 8 months would take a long time. Her mother was once told by a consultant that no other cancer has this type of treatment – it is extremely aggressive – fight fire with fire…

Robyn is very beautiful, inside and out, and extremely active. She used to enjoy gymnastic classes with her cousins, dancing, and would ride her bike for miles. She loves Harry Potter, High School Musical and Lady Gaga. She has a strange liking for mini coopers – in particular, yellow ones. She loves Spongebob, animals, and the colour yellow. She also loves dressing up and much to her mother’s disgust – applying make up!

Robyn would dearly love and appreciate receiving a letter from anyone who could spare the time to brighten up her day. I speak for every parent of a child with cancer when I say they are the bravest, most beautiful beings to walk this earth.

Update 29th September 2013

We are very sorry to say that Robyn has passed away. Robyn’s Mum Lisa recently posted;

“Our family are finding things fairly difficult at the moment but we most definitely do find strength and comfort in the continued support shown to us by you all. Regardless of how rubbish the day is, when the postman arrives there is always a handful of post from the wonderful Post Pals. Thank you too to everyone (from all over the globe!) who takes the time to write to Robyn. She ALWAYS appreciates your cheerful efforts.”

Update 26th July 2013

A little while ago Robyn had another round of MIBG therapy and made a video during it which you can see here https://www.youtube.com/watch?v=3uYPF2X9v6w

The round of MIBG didn’t make any difference and Robyn was given her stem cells back to try and boost her blood counts but is still needing transfusions.

Two weeks ago Robyn had a cycle of Zometa (good for long term bone pain) but it has caused very severe pain. She is on large amounts of Oxycodone and Fentanyl lozenges. If the pain is under control then she’s often asleep. Her pain was everywhere for four days, every bone, muscle and joint. Now it’s only in her right leg.

She has a medium size lump at the back of her head which she is having radiotherapy on and a second one also appeared. When she had the CT scan on the tumours she was struggling for air. Slight panic ensued and she was given oxygen for an hour. The cause of this was probably an increased dose of Oxycodone and her little body was protesting.

This last week has been constant pain for Robyn with anger and tears. Then the odd hour of no pain with laughter, chatting and apologies. I cannot bear her apologising. Never should she have to apologise for her feelings and behaviour when she’s ill and in severe pain.

She has been unable to walk any distance since Saturday, only to transfer from bed to chair. At 2am she walked down the stairs and ate a yoghurt and some cheese; she was delighted with herself.

Update 2nd May 2013

Thank you Postpals for Robyn’s balloon (Viks) and all the ecards she received (I recongnised a few names there!), she had over 50. These cheered her enormously whilst having mibg therapy. We fly home tomorrow. Thank you!

Update from Post Pals 22nd April 2013

Robyn is currently an inpatient and the hospital have an Ecard system. Please send Robyn a cheerful note just by filling in the form here, the details you need are Robyn Higgins and Floor 4. Why not share your favourite joke or funny poem?

Update 22nd April 2013

Robyn moved on from Post Pals in October 2010 as she had completed treatment and was NED (no evidence of disease). She worked hard to regain full mobility, went back to school, joined the Brownies and was enjoying life.

Unfortunately in April 2011 scans showed that the cancer had come back, there were 2 small spots in her skull vault and a small amount in her abdomen, thankfully her bone marrow was clear. The UK only offer palliative treatment so her family turned to America for help.

Robyn had her First Holy Communion (which had been arranged before her relapse) looking beautiful in her white dress and curly hair before flying out to Philadelphia to start intense treatment. Robyn remained in the USA for several months undergoing a tough regime of chemotherapy. Initially the area of Neuroblastoma responded to the chemo but later progressed, so Robyn was changed to a different type of chemotherapy.

Robyn has had lots of different treatment on both sides of the Atlantic since 2011, some have worked better than others. Now, in 2013, Robyn has had 2 rounds of chemo in the UK and has just returned to America for another round of MIBG therapy.

Robyn would love some cheerful post to make her smile.

Update 2nd October 2010

I think it is time for Robyn to move on from Post Pals now as she is currently well. I cannot thank you enough for all that Robyn has been sent. I cannot believe that people thought of Robyn when she needed them and I am amazed by the thought put behind the letters and gifts. Thank you everyone.

Update 20th July 2010

Hi everyone. It has been a long time since I have updated you on Robyn and for that I truly apologise, but I think, looking back, I found certain things really difficult being so far from home.

Anyway, Robyn underwent 5 months of antibody (immuno) therapy at The Children’s Hospital of Philadelphia and this was fairly harsh treatment. This was compounded by the fact that she had to attempt to learn to walk again in between treatment with intensive daily physical therapy. She did so very well and I am immensely proud of her. It is very scary being so far away from home with a seriously ill child but I would do it all again in a flash.

We came home from The States on the 1st of June and Robyn attempted to try to return to school for 2 hours a day. She was still extremely underweight but we were continuing to build her up nightly via her NG tube. She can now walk really well albeit with a minor limp – now we just to teach her how to run.

On the 7th July Robyn and I flew back out to The Children’s hospital of Philadelphia where she had received her treatment for her final scans and bone marrow aspirates. These eventually came back as ‘clear of cancer’ and we are all, of course, delighted. Although it has to be noted that Robyn’s scans have all been ‘no evidence of disease’ since November 09 and that although this is fantastic news, any Neuroblastoma family will tell you that this disease, in particular, is notorious for returning.

So! While we were in America we lived at the Ronald McDonald house in Philadelphia, a wonderful house with even more wonderful staff and volunteers ensuring that families like ourselves with seriously ill children far away from the familiarity of their own homes were as safe, warm, fed and cared for as we could possibly be. Every morning when we came out of the lift into a beautiful hall there were pigeon holes with each family’s door number on. We were number 19 and number 19 was ALWAYS stuffed full of Post Pals post. You have no idea how special Robyn used to feel opening her post with all her little friends she had met. Also, on the days that she just couldn’t get up because she was feeling so weak, I would either coax her downstairs or bring it all up to her. Over the months that we were in Philly we must have had scores and scores of letters and parcels – and then Greg and Tommy would bring loads more with them from England when they visited!

I couldn’t possibly thank or even respond to everyone personally but please rest assured that if you sent Robyn post (or any other child for that matter!) you have done something very special and for that a huge heartfelt ‘THANKS’ goes to you

Update 19th April 2010

Robyn is very poorly at the moment. She is in hospital with shingles and has been for 2 weeks now. Sorry I haven’t updated her page, it is just that things have been so stressful.

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 23rd 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 2008

Armani was diagnosed with Neuroblastoma in September 2007. He has stage 2 N-MYC positive so is high risk. He underwent 8 rounds of chemo every 10 days for 80 days. Then he went on to have surgery in January 2008. He has also had a stem cell harvest followed by high dose chemo. He is now on retinoic acid whilst waiting to start 3 weeks radiotherapy.

Armani is an inspiration, he has continued to laugh and smile throughout.

Armani is now 23 months old and like any other 2 year old toddler. He takes his tablets without complaining and is such a brave little hero.

Update 3rd July 2008

Armani is due to start radio therapy in a few weeks time for 3 weeks, his hair has now come back and he is loving life so much. He is doing remarkably well and we hope and pray he continues to do so.

Thank you all so much at Post Pals. Armani loves to receive his very own mail in the post and the surprises waiting to be opened. You are all stars. I would like to thank Hwee hoon, Hayley Thorn, Kate Dee, Sarah, Susan, Laura H, Isobel and everybody else that has sent Armani post these last few weeks. They put a smile on his face every time he opens them. Thank you all so much for your generosity.

Story written 2010

Connor was diagnosed with stage 4 Neuroblastoma in November 2008. He started with 7 cycles of chemotherapy followed by a 7 hour operation to remove the tumour. He then had an 8 week stay in hospital for high dose chemo, followed by 3 weeks of radiotherapy, and last but not least, 6 months of tablets called retinoic acid.

Finally, after 16 months of treatment, Connor was given the all clear. Things were on the up until June 2010 when we were given the worst possible news anyone could ever hear. Neuroblastoma was back and this time there was no way of getting rid of the horrible disease, he was terminal.

The little fighter he is has now started more chemotherapy to try to slow things down. He’s not letting anything stop him and is living life to the full and is still the cheeky little boy he always was and will be.

Update January 2015

Nathan is doing well at school and enjoying himself once again. He would like to move on from Post Pals now so that other children can have a chance to enjoy receiving post, just like he did.

Thanks again for all your support.

Update 29th October 2013

Nathan started nursery in September and is loving it. He’s had quite a few hospital appointments as he’s having trouble walking due to his feet turning in. The consultant said he has relaxed joints and his hips are turned in so it will cause pain and he will fall over more than normal. We are waiting on an appointment for a second opinion.

Update 28th February 2012

We are very sad to say that Connor passed away this morning. Our thoughts go out to his family.

Update 9th June 2011

Not good news like I was hoping for with scans. They have showed that since treatment in London there is now an extra three spots of disease in his body, so not good news at all. He is now back on the chemo like before – 1 week on and 2 weeks off. He’s doing really well though, never misses school and is still his normal active cheeky self.

He doesn’t know yet but he’s got his wish on the 27th of this month from Make a Wish Foundation. He’s getting to go to a racing car track as he’s mad on cars so he should really enjoy his day. We’re also taking him away for a week in a caravan – he doesn’t know about this either. So 2 big treats for him, but he deserves them all.

Update 2nd May 2011

Connor has had all his treatment down in London and is doing well. He is back to school full time apart from the odd day when he has a check-up at hospital. He has a few scans/tests coming up this month to show what the treatment at London has done exactly. A bit of positive thinking though is that the levels in his urine they use to test for Neuroblastoma has gone down since the previous one he had done.

Update 17th February 2011

Connor has very recently just come back from a very hard time at the UCL (University College London hospital) where he has had two courses of MIBG therapy and chemotherapy.

He was isolated from everyone and wasn’t allowed out of the room with being radioactive. There were a lot of rules and regulations but Connor tried his hardest to stick to them all.

When he returned home he wasn’t allowed near pregnant women and under 18’s meaning he couldn’t be near his baby brother. It’s been hard but he’s only got another week left and he can see him. But as if that wasn’t bad enough, Connor went to his hospital for a blood and platelet transfusion and got a temperature so with being neutropenic he has to stay in for three days IV antibiotics. It just seems to be one thing after the other for him but he hasn’t complained yet.

The little gifts have helped lots and he brought the pens and sticker books etc into hospital with him. A big thanks to all the lovely people that have helped him through this, not forgetting Dottie, who he is cuddled up in bed with as I write this.

Update 19th December 2010

Connor is doing really well at the minute. He is still having chemo until he gets MIBG therapy at London after Christmas. He’s just had more scans that showed no improvement, but the consultant was pleased with that because it shows the chemo is controlling the horrible disease. So, finally some good news not long before Christmas.

Post Pals really cheers Connor up, he loves coming home from school to see what he’s got that day – letters, pictures or presents – he loves them all.