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Harry's Journey

1/4/2019

Harry is just like any other two year old. He is cheeky, mischievous, very active and loves being outside. He enjoys playing with his big sister, Isobel, who he adores, and he loves to annoy her too! He loves planes, helicopters, diggers, fire engines and anything else with a ‘nee-naw’ sound, but unfortunately Harry doesn't lead the ‘normal’ life of a two year old. In January 2018, Harry was diagnosed with Stage 4 High Risk Neuroblastoma.

This is Harry’s journey, as told by his mum, Carly...

“Harry was not quite himself for around two months prior to diagnosis. He wasn't eating a lot, he was restless at night, he became very clingy and seemed tired. I took him to the doctor only to be told it is more than likely a virus. That Christmas, he wasn't interested in his new toys and by the new year his tummy looked bigger and no longer in proportion.

I took him back to the doctor on 2nd January and he was referred to our local hospital for further investigation. I was immediately worried but tried to reassure myself that it couldn't be anything serious as he stopped crying as soon as I picked him up. After various tests and scans, we were invited into a room with a box of tissues on the table. We immediately knew it wasn't going to be good news. We were told they had found a 16cm tumour growing in Harry's tummy! I immediately blamed myself. How did I miss a tumour the size of a ball growing inside my little boy? We felt numb, lost and scared of the journey ahead of us.

The next few weeks are a bit of a blur. We were in a bubble. We blocked people out. We were just focused on Harry and keeping it together to make a daily phone call with Isobel who played happily at her grandparents, blissfully unaware that our family life would never be the same again. Our local hospital is not equipped to treat Harry's condition so we have to make a 135 mile round trip for every appointment or stay.

At first Harry went downhill. He slept a lot and when he was awake he cried in pain. But thankfully, a few weeks later he began to improve. He moved around the bed more easily and didn’t seem to be in so much discomfort. By the end of January he ventured out of his bed space and started to became a cheeky chap again, high fiving the nurses and marching up and down the corridors pushing a dolls pram. He is such a character and brings a smile to everyone’s face. We are so proud of our brave boy.

Since January 2018, Harry’s treatment has included:

3 weeks of radiotherapy
8 hours of major surgery
1 night in intensive care
Various chemotherapies
30 days in isolation
A stem cell harvest and transplant
Countless blood and platelet transfusions
Immunotherapy
Over 200 nights in hospital
Countless outpatient trips to the hospital

Our world has been turned upside down. Isobel, who was 4 years old when Harry's journey began, has had to live with her grandparents while we are at hospital. I missed her 5th birthday, school plays, her first swimming lesson, learning to ride a bike and lots more. Isobel has coped remarkably well with the sudden change and we are so proud of her. Harry adores his big sister and we always look forward to going home to see her. She always greets Harry with a big hug!

Harry is nearing the end of his frontline treatment. We thought we would feel excited about this, but instead we are fearful. Neuroblastoma has a high chance of relapse and if a relapse was to happen less than one in ten survive.”

Harry’s family are trying to raise £239,000 to access Bivalent vaccination in New York that has been showing promising signs of reducing the chance of relapse, giving Harry the best chance at living cancer free.

In addition, Harry’s dad Ali, is self-employed, so has been working hard throughout Harry's treatment to make sure the bills continue to get paid. Unfortunately bills do not stop because your child has cancer!

Micky's Story Updated

17/1/2019

In July 2018, 11-year old Micky was diagnosed with a very rare, high-risk leukaemia known as Early T-Cell Precursor Acute Lymphoblastic Leukaemia or ETP-ALL. Prior to diagnosis Micky was a promising motocross rider with a passion for bikes.

Treatment
While leukaemia is generally considered treatable, ETP has a very poor prognosis, so doctors advised Micky’s parents to start making happy memories with him.

Micky received high-dose chemotherapy three times a week, and high doses of steroids. He also had blood and platelet transfusions, and daily visits from community nurses. The side effects were especially difficult for him as an 11 year old boy - he gained weight and his blonde hair fell out.

A Big Surprise
Three months into Micky’s treatment, his parents were told his chances of survival were very low and to expect the worst and start making memories. He underwent another bone marrow test and the results were most unexpected… Micky was cancer free!

If the cancer ever came back there would be very little doctors could do, so to prevent a recurrence, Micky had a bone marrow transplant, as well as eight rounds of radiation and another high dose of chemotherapy.

“It was very hard to watch but Micky smiled and joked all the way through, he had strength that made me beam with pride”

The Fight Continues
A few weeks after his transplant, doctors gave the dreaded news that the transplant wasn’t working and a search for a new donor began. Doctors began testing Micky’s siblings, but before they could go ahead with a second transplant, the first one started to work!

Micky has been in isolation at Great Ormond Street Hospital since November 2018, during which time his weight has dropped to four and a half stone. Though he remains a high risk, doctors are still confident that he has a good chance of recovery.

“Being stuck in isolation has been bleak and heart wrenching. I have never felt so useless as a parent and felt so out of control”

Micky is not allowed to go to school for a whole year following his transplant, and he needs to be in isolation for six months while he recovers. After everything he has been through, he finds it hard to do a lot of the things we normally take for granted, but his parents are just grateful to have him. They have faith that Micky will go from strength to strength and that his courage and determination will get him through.

How We Helped
Regular trips to and from hospital, as well as hospital parking, and food and drink during stays are very expensive. Micky’s diet was very specific, so the cost of food shopping also increased when he was at home. Thanks to your support, we were able to supporting Micky’s family financially during his fight. We also held a birthday card appeal for Micky's 12th birthday. Micky personally opened every single one, and they really helped to make his birthday extra-special while he was stuck in isolation.

THANK YOU!
Thank you to all of our fundraisers and donors whose support enabled us to help Micky's family finanically, also to everyone who sent cards and gifts for his birthday, and to the staff of Nuffield Health in Fulham who sent a wonderful video message for Micky too! Thank you also to Matt's Missions who joined us in the birthday card campaign, and sent us a massive parcel full of cards sent by their supporters too!

*Update*
We are deeply saddened to announce that Micky lost his fight on Saturday 13th April 2019, while at home with his family.
A special thank you to everyone that took the time to post a card, send a message or make a donation to put a smile on his beautiful face. We hope Micky rests peacefully and send our love to all Micky's family, friends and loyal supporters.

Lulu's Story Updated

17/10/2018

In January 2018, Lulu was diagnosed with high-risk stage 4 neuroblastoma. She was just 4 years old at the time.

In the UK, around 100 children are diagnosed with neuroblastoma each year. It is a tumour arising from particular nerve cells, which run in a chain-like fashion up the back of the abdomen and chest into the skull. Usually neuroblastoma is discovered in the first few years after birth, but because Lulu’s wasn’t, it had a chance to spread and do more damage. She had surgery to remove the main tumour but the cancer had already spread to her lymphatic system, her legs and bone marrow.

Since January, Lulu has had at least 28 doses of chemotherapy, countless nights in hospital including 33 days in isolation, multiple blood transfusions and stem cell transplants. Next on her schedule is radiotherapy and immunotherapy which will continue until at least summer 2019. The treatment schedule is very aggressive to treat this horrible disease.

Lulu’s parents are so proud of the way she has handled everything she has been through.

“What is amazing is that Lulu has always had a beautiful smile on her face and has a cheeky sense of humour making us and her nurses laugh. Her bravery and courage are such an inspiration”

There are many painful side effects of Lulu’s treatment, but one of the hardest things for her to deal with is being separated from her 11 year old brother, Archie, and being away from home. She has also missed a lot of school, as she is either at hospital or has a high risk of infection due to her treatment, so she has missed her school friends a lot too.

The cost of supporting Lulu’s treatment schedule is one of the many hidden impacts of cancer.

Lulu’s mum used to work at her school as a Teaching Assistant but has had to give up her job to care for Lulu.

The long commute to and from the hospital has taken it’s toll on Lulu’s family financially. However, her local hospital does not offer the specialised treatment she needs, so they have no choice. With her mum unable to work, these costs have had even more of an impact.

*UPDATE 12/12/2018*

"After high dose chemotherapy, Lulu had three weeks of radiotherapy and has now started immunotherapy which will last until May 2019. This involves tablets at home for three weeks followed by a ten day stay in hospital having an infusion to treat the cancer which needs to be combined with morphine as it can be quite painful.

"Lulu has developed some complications. Her lungs have been damaged by the high doses of chemotherapy so her lung capacity has been reduced by 30%. At this stage we do not know if the damage will be permanent. She also has an issue with her kidneys which is causing high blood pressure which will need a further operation to resolve.

*UPDATE 18/01/2018*
Thank you to everyone who has donated money for Lulu's family, and all the other children that we support. Thanks to our supporters, we have been able to provide care grants to help with the costs of hospital travel for Lulu's appointments, as well as offering a regular listening ear on the phone.

Neuroblastoma is one of the most aggressive childhood cancers with a 50% relapse rate. Following a relapse, the chances of survival are just 10%. Lulu's family have discovered that there is further treatment available which trains your immune system to identify cancer and eliminate it. This treatment is only available in one of the leading cancer centres in the world, the Memorial Sloan Kettering Centre in New York. They are now trying to raise £162,000 to fund this treatment to give Lulu the very best chance of survival.

Solving Kids' Cancer are heading the appeal to raise the £162,000 that is needed for Lulu to receive this treatment. You can donate to their campaign here: https://solvingkidscancer.org.uk/campaigns/lulu/

Alternatively, you can still donate to Lulu's family through our website by quoting 'For Lulu' when you make your donation.

Harrisons ALL Journey

22/1/2018

Harrison is five years old and was diagnosed with leukaemia the day after his 3rd birthday.

Like any other three year old, Harrison loved to run around in the garden and was excited to meet new friends when he started nursery.

In summer 2015, his skin turned an unusual shade of brown so his mum and dad, Nikki and Steve, took him to the GP. They were advised to take Harrison straight to their local A&E, where he underwent lots of tests, and later that day a doctor sat them down and explained that Harrison had leukaemia.

“That’s when our whole world fell apart. We didn’t quite understand what we were being told. We heard what was being said, we knew that it was serious but couldn’t believe it was our son they were talking about.”

Harrison’s 3rd birthday party, which was the following day, had to be cancelled because he was too poorly to leave hospital. He began receiving blood transfusions to make him stable and spent nearly four weeks in hospital while they fitted a portacath, gave him x-rays and scans, and started chemotherapy.

Harrison has an older brother and sister, Finlay and Libby, who are 11 and 13. They had to stay with family so that their mum and dad could concentrate on Harrison while trying to take in what was going on and the impact it was going to have on all their lives.

Finances became a struggle with mum being out of work to take care of Harrison and only one income to cover the cost of travel to/from hospital appointments on top of their usual outgoings. Not only was Harrison fighting his own battle, his parents were also battling to keep a roof over their heads.

Harrison is now two years into his three year treatment plan for Acute Lymphoblastic Leukaemia (ALL) and it has been a difficult journey. He has struggled with colds, line infections, bacterial infections and had even more blood transfusions. There have also been lots of side effects of the treatment that have meant he sometimes struggles to walk, and his body aches a lot, but overall he has been responding well to the treatment.

Harrison should be enjoying his life, going to school and playing with other children, but instead he is often stuck in a room in a hospital and has made friends with the doctors, nurses and play specialists. He has also learnt many new words like ‘portacath’, ‘chemotherapy’ and all the long names for the medication that most adults struggle to pronounce.

“The impact this has had on our family is immense. We can’t do anything without first thinking about Harrison’s needs. If we travel we need to know where the nearest hospital is and make sure we have enough medication and syringes.”

Thanks to the help of our supporters, Harrison’s family have been receiving emotional assistance from our family support team, as well as some small grants to help them through tough times financially.

“It’s been so nice to have Lennox at the end of a phone, helping with a holiday, advising us on how to fill out forms, and even giving us money to support Harrison’s needs”

His treatment isn’t due to finish until the end of this year and then his family will have an agonising few months to wait before they know if he is leukaemia free. In addition, they are all still living in temporary accommodation and struggling to make ends meet so we need to continue supporting them in every way possible.

Amy's Rollercoaster Journey With Neuroblastoma

13/11/2017

Amy was diagnosed with cancer in 2014, when she was only seven years old. Initially, her parents thought she had a urine infection and took her to the hospital for a routine scan, but unfortunately, the scan turned into something much more serious when it revealed a growth on her adrenal gland, which is just above the kidneys. Amy had neuroblastoma, a rare type of cancer that affects around 100 children each year in the UK.

"You never think that this will happen to your child"

The cause of neuroblastoma is unknown but it is less common in children over five years, like Amy. Treatment can vary greatly from patient to patient depending on the stage of the neuroblastoma and the age of the child.

Amy’s diagnosis was a huge shock to everyone, but thankfully, further tests and scans confirmed that the cancer hadn’t spread to anywhere else in her body. This meant that Amy wouldn’t need chemotherapy or any other unpleasant treatment, however, she did require an operation to remove the tumour. Amy underwent seven hours of surgery in November 2014 and the tumour was successfully removed.

For the next two years, Amy underwent regular scans to check for any signs of relapse, but other than that, she was a normal, bright and bubbly little girl.

Sadly, this was to be short lived, as in November 2016 one of Amy’s scans showed an abnormality. Further tests revealed that the cancer was back, but this time it was in her pelvis, and surgery was not going to fix it. Her family were devastated. She had a Hickman line put in and began chemotherapy immediately.

"When Amy was first diagnosed we thought that we had been lucky in that she only had surgery and life went on, but when the scan showed it had returned, our lives fell apart"

Amy has two older brothers who adore her. Her oldest brother sat his GCSEs while Amy was going through her treatment, and her other brother had to spend a lot of time with friends and family every time Amy had hospital appointments.

Amy’s little body found treatment very hard to cope with and she became very ill. She also developed an infection, which resulted in sepsis and had to be rushed into surgery to remove her Hickman line early.

The doctors had planned to give her a stem cell transplant but after eight rounds of chemotherapy, it was clear that her body would not be able to cope with it and the risk would be too high. Her family went to see a specialist to find out if Amy was able to trial a new treatment but sadly, she wasn’t eligible for that either, so instead, she had a new Hickman line put in and started a new chemotherapy which was less toxic than the previous one.

Amy is now halfway through her current course of chemotherapy and she has been lucky to spend more time at home with her family this time around.

"Amy still continues to fight and is doing a lot better on the chemotherapy than before!"

Amy has been unable to attend school since December 2016 so her mum, Natalie, has had to give up work to look after her full-time. She has received support from social workers at the hospital who suggested that she contact us.

The hospital where Amy is treated is an hour away from her home, and she currently attends every day for two weeks, each month. The cost of their travel is having a huge impact on the family so, with your help, our care grants project will support Amy’s family by providing regular grants to cushion them financially.

Amy has lost a lot of weight as a result of her treatment and none of her clothes fit her so mum and dad are also hoping to buy her some nice, new, comfortable clothes.

Update from Amy's mum - November 2017

"Amy has had a scan over the last few weeks which was clear of any cancer, so she only has to do two more weeks of chemo (last one ending 1st December). She'll then have more scans and if all is okay she will move on to maintenance therapy after Christmas!

Amy is doing really well in herself but is finding it hard not being able to go to school at all to see her friends. She is feeling a little lonely after a long year of treatment. We are hoping that by the summer next year all this will be over and we can get back to some kind of normal if that is possible.

We thank you all for your financial support over the last few weeks it has made things a little easier and we are so very grateful!"

Benny's Journey So Far...

7/9/2017

Benny is 11 years old and lives with his mum, dad and 14 year old brother, Jack.

In May, Benny came home from school complaining about a sore throat and he had a fever. After a trip to the doctor he was told he had tonsillitis and given a course of antibiotics, but that weekend a rash came up around his ankles and quickly spread to his arms and torso. Benny’s mum and dad thought the rash might be a reaction to the antibiotic he was taking, but took him back to the doctor as a precaution.

Benny was sent for blood tests and after a long day in hospital, his mum and dad were called into a consultation room. They were still expecting to be told that Benny needed a tonsillectomy, but to their complete shock, they were given the devastating news that Benny had leukaemia.

The whole family’s lives were turned upside down as they started to think through the implications of Benny’s diagnosis. The doctor told the family to clear their schedule of all plans and commitments for the next 3-6 months. This meant that their upcoming holiday to visit family abroad had to be cancelled. Benny cried when he was told as he had not seen that side of his family in six years and it was meant to be a very special holiday where he would meet his new cousin for the first time.

“I know it sounds clichéd, but a situation like this really is every parent’s worst nightmare. My wife and I were both in a real state of shock. I knew I had to pull it together for Benny but there were times when I just couldn’t hold back the tears, no matter how hard I tried”

The next day Benny was transferred to another hospital, which is 90 minutes away from their home, and that was where he spent the next 29 days having his initial treatment. It was extremely stressful trying to organise travel back and forth, meals, parking, accommodation as well as someone to look after his brother, Jack, while he completed the last six weeks of his school term.

Mum and dad knew that when Benny came home from hospital, his immune system would be really low and his mobility would be restricted. The only bathroom in their house was in desperate need of modernising to ensure that it was hygienic enough for Benny to use, and his bedroom needed major repairs too. The family had to live apart while the work was carried out and additional damp problems were fixed.

All the building work drained their savings, and in the same month the car had electrical problems, and Jack got tonsillitis so had to be kept away from Benny! The worst thing was the realisation that this was only the start of their fight against leukaemia, and there was a long road still to travel.

Benny’s dad, Ally, did some research online and came across our website. He made a care grant application and was awarded some money to help with the costs that were incurred during Benny’s hospital stay, such as parking, food, clothing etc. However, Ally told us that what he found most helpful was the practical and emotional support offered by our Family Support Team.

“Honestly speaking, my chat with Lennox, more than any other, was really uplifting for my spirits. To have someone on the other end of the phone who could give practical advice in such a brilliant way. I really can’t find enough words to praise them. You dread the idea of having to ask for assistance for fear of being stigmatised but after that conversation I realised that you do need support and it really is out there.”

On day 29, the doctors brought the good news that Benny was in remission, but treatment would continue as it was probable that leukaemia cells still lurked in his body. Benny was discharged, and became an outpatient.

Although the family were reunited and able to establish routines again, Benny’s lack of mobility due to muscle wastage made things difficult. The use of a wheelchair facilitated an improvement in his mobility although he was still keen to stay home rather than venture out anywhere. He kept saying that this life was ruined by leukaemia.

After being home for just six days Benny was admitted back into hospital because his temperature spiked over 38 degrees. The doctor said that his consolidation period and regime had to be changed so it was going to take twice as long as was initially thought. While in this treatment phase, he also cannot be more than an hour away from the local hospital in case of another spike in temperature.

Benny will only be able to attend school on vastly reduced hours and is missing out on his final year of primary school’s annual residential trip in September that he was really looking forward too. He has big challenges facing him over the next three years but Benny has accepted his diagnosis and is up for the fight. His bubbly personality, cheerfulness and politeness will see him through as well as the love and support from family, friends, oncology staff and of course, our Family Support Team.

*Update 10/05/2019*

Benny is almost two years into his treatment and things seem to be going well, his family remain very cautious but optimistic.

The medical team are pleased with his progress and he has had pretty good school attendance recently with only a couple of hospital admissions in the past year!

Harry's Story

5/7/2017

Harry is a funny, happy and kind six year old boy who loves superheroes and wrestling.

In December 2015, a tumour was found in Harry’s spinal cord and he had to have two operations. The first was on his sister’s 8th birthday and it lasted eight hours.

The tumour was only partially removed as the risk of paralysing him was too high to remove the whole thing. He was kept asleep for 36 hours afterwards and when he woke up, he couldn't walk.

“I will never forget the day we found out. It was heartbreaking, and every time we told a loved one, we broke their hearts too.”

Harry was in a wheelchair for a long time after his surgery and had to learn to walk all over again! He has fought hard and although he was in a wheelchair for a long time, he has learned to walk again.

In January 2017, following one of his regular MRI scans, his family were told the devastating news that the tumour was growing and had spread to his brain. He had to start an 18 month course of chemotherapy right away and is now a third of the way through.

The chemotherapy is killing his good cells as well as his bad ones, which means Harry is neutropenic most of the time, and as a result the family haven't been able to go out much in the last 18 months.

The chemo has also permanently damaged Harry's nerves in his lower legs and feet, so he struggles to walk and has to use splints when he’s not in his wheelchair. Harry's current chemotherapy is just to stop the tumour growing, so in the future he will need more surgery or more chemotherapy.

Unfortunately this very difficult year took it’s toll on Harry’s mum and dad, and sadly their marriage broke down in September 2016. Harry’s mum is now raising four children as a single parent.

“I feel like Harry has lost his childhood. There are so many things that six year old boys do that he never will - football matches he’ll never play and parties he’ll never go to”

Harry lives with his mum, nine year old sister and two younger sisters. As a single parent family, money is tight, so the funds raised for Harry and his family through this appeal will be used to put decking in their garden, lay Astroturf, and get some nice play equipment. Harry is still neutropenic and cannot go out (other than for hospital appointments), so it is important that he has a nice, safe outdoor area to enjoy some fresh air and sunshine. The Astroturf will reduce his chances of getting an infection and some decking will make it more accessible for his wheelchair.

Hopefully, this will help Harry and his sisters create lots of new happy memories, instead of the horrible memories of hospitals, treatments and feeling ill.

“Looking through photos of the last few years is so much harder than I imagined it would be. Harry’s been through so much and there is still no end in sight.”

Harry’s mum told us “We are so grateful for all the love and support we have received, all the kind messages keep us going. The kindness of others will stay with us for the rest of our lives.”

Roxie-Beau's Family Appeal

6/4/2017

My wife, Rachel, and I have three beautiful children, Leonie, Kenzie and Roxie-Beau. Roxie is our youngest and is the heart of our family. In December 2015, she was diagnosed with Medulloblastoma, a cancerous tumour on the brain.

A year later, after chemotherapy and the all-clear from the doctors, she was diagnosed with a regrowth of the same tumour. Throughout Roxie’s journey I kept a diary, so this is our story…

Winter 2015
Roxie-Beau was just two years old and kept being sick in the mornings. She also became unbalanced, went off her food and milk and her attitude changed, but we just assumed it was down to the ‘terrible twos’. After countless doctor’s appointments, an MRI scan showed that Roxie-Beau had a brain tumour in her head the size of a cricket ball. Our hearts were broken, words couldn't describe the numb feeling.

Roxie immediately had 9 hours of surgery, followed by another 15 hours of surgery to remove the tumour. Her hair was shaved and she had tubes everywhere. Afterwards, the doctor who was performing the surgery came and told us we had lost Roxie twice during the surgery, but they had successfully removed 99.9% of the tumour. Roxie was placed in intensive care. It was so hard to see our little princess motionless and with wires and tubes everywhere. The doctors did tests on the tumour and told us it was the dreaded ‘big C’ and that Roxie would need chemotherapy for 7 months.

Throughout this our other kids were at home, and though we were in touch with them everyday via FaceTime, it wasn’t the same as being around them, especially at Christmas time.

Roxie had more surgery to have a Broviac line fitted in her chest to get medicines and chemotherapy drugs into her. Seeing all her different drugs was shocking but Roxie took it all in her stride. She was so brave, and we were finally getting lots of cuddles and a few cheeky kisses!

When Roxie’s chemo started, we had to start looking at our future financial plans. We’d already had six weeks without being paid, which took a toll on us financially. Family helped us where they could, which was difficult as we are a proud family, but SSP alone just isn't enough to live on. We agreed to get part one of the chemo out of the way and then split shifts at the hospital so that I could work.

Spring 2016
The months went quickly, and splitting our time between the hospital and home seemed to work well, however, not being able to put in the hours at work made money very tight. During the second stage of chemotherapy, Roxie had to shower every 6 hours and have all her bedding and clothes changed each time, so we had to buy her lots of extra shorts and vests.

Most days Roxie just laid motionless, and the feeling of not being able to help her crushed me inside. I was supposed to protect my little girl, and I couldn't. I hated the world so much and I kept blaming myself, thinking I could have done something differently.

Summer 2016
Roxie finally reached the end of her chemotherapy, and was allowed to come home. She had an MRI scan to compare to future scans and the results showed that all was ok and there was no re-growth. We were the happiest parents alive and to celebrate, we scraped some money together for a takeaway treat.

Roxie had a lovely summer, other than one short hospital stay, because of a dangerously high temperature that was caused by an infection. Roxie also had regular check-ups and visits from the community nurse.

One year after diagnosis Roxie had a great few months and she was very excited for Christmas. She understood that she would get some presents and wrote a letter to Santa. After everything we’d been through, we thought this would be the best Christmas ever.

Unfortunately, it just wasn’t to be. Only weeks before Christmas, Roxie had a routine MRI scan that showed something abnormal. Roxie’s brain tumour had grown back. Rachel and I started to cry, we were both numb. Roxie was playing peek-a-boo with the other doctor, and we were confused because she hadn’t shown any of the signs she had last time. We were so shocked. Seven months of chemo had been a waste. What now?

My work said I could have as much time off as I needed, but only with statutory sick pay, and our other children went to stay with family. They were devastated, but putting on a brave face and acting so grown up about everything.

Roxie needed surgery, lots of surgery. Roxie underwent six operations in 17 days. She was bed bound and didn't move for days. She was in so much pain and cried whenever she wanted to move.

Roxie wasn’t allowed home for Christmas, which meant our family were divided again. She didn't even know what day it was, and only managed to open a few presents. Rachel and I were both so upset that we went outside for a cry.
After Christmas, Roxie had another three operations and, thankfully, started to improve. She had a CT scan in preparation for her radiotherapy, and had tattoos (yes tattoos!) to mark where the radiotherapy would be aligned to.

We took Roxie home for three days and when we went back, the doctors asked to see us immediately. They had found a dark patch on the scan and wanted to delay the radiotherapy for her to have further tests. More scans revealed that the tumour had re-grown since her surgery five weeks earlier! We were devastated all over again. Was Roxie ever going to get a break? She had radiotherapy blasts to her head and back, plus eight different medicines three times per day.

In January, Roxie finally got a clip in her hair. Proud daddy moment, her hair came back a lot in such a short space of time.

Me and my big mouth, three weeks into radiotherapy Roxie lost all her hair in one night. I woke up looking like Teen Wolf! Heart ache all over again, will she ever have any hair?

How You Have Helped
Reading this back has opened my eyes to a lot of things that we went through as parents - things no parent should ever have to go through. Work, hospital, work, hospital, work, hospital. That has been our lives. However, Roxie has been happy thanks to the iPad, Play Doh, Paw Patrol, Peppa Pig and Mashums keeping her entertained at the hospital.

I have always worked hard and I strive to do my best for my family, but nothing could have prepared us for the costs that have been associated with Roxie’s diagnosis. We live so far away from the hospital that there is no way to avoid the debt, it’s not just a quick car journey now and again.

We are a proud family who have been thrust into a difficult situation, and we hate asking for help. However, the support we have received from Lennox has helped us to pay outstanding bills and get 'back in the black'! Your donations have also put a smile on Roxie’s face by helping us to purchase a little playhouse and we are so grateful.

*Update*
Roxie's dad has told us that he is extremely grateful for the financial and emotional support that the family have received from our team. It has allows them to concentrate solely on their family and spend less time concerned about finances.

Your donations have also enabled Roxie's family to book a family trip of a lifetime to Disneyland in Paris later this summer! They have promised to send us some photos when they get back!

To read Aaron’s full diary, and more about Roxie-Beau’s story, visit: www.lennoxccf.org.uk

To make a personal donation to Lennox Children’s Cancer Fund for Roxie-Beau’s Appeal:
Text ROXB43 £5 to 70070 to donate £5
Text ROXB43 £10 to 70070 to donate £10

Brooke's Journey

5/1/2017

Brooke is three years old and lives with her mum (Charlene), dad (Kenny) and 8 year old brother, Kaycee. Brooke’s journey with cancer started on Sunday 2nd October 2016, just after her first family holiday to Mexico, which her mum and dad had spent years saving for. This is Brooke’s story, told by her mum…

“It was Sunday morning and we were going to lunch to celebrate Brooke’s nana and papa’s ruby wedding anniversary. I was getting Brooke ready when I noticed some purple spots on her belly which I thought could be a rash or sun spots from our holiday. Kenny and I called the NHS out of hours helpline who advised us to take her to A&E. The doctor examined Brooke. He said her spleen was enlarged and she had bruises on her back. She also had bruises on her legs, which we had put down to playing in the waterpark on holiday and running around with her brother like all normal three year olds do.

We were taken to the out of hours department in the children’s ward where Brooke had a blood test. I burst out crying and asked the doctor if she was going to die. I had researched the rash online and I just knew it was going to be leukaemia. When the results came back, the doctor told me the words any parent would dread “I’m very sorry, it looks like it’s leukaemia”. Kenny and Kaycee were devastated too.

I made the dreaded call to my mum and dad and I will never forget the scream my mum made when I told her. They came to the hospital to pick up Kaycee, and the rest of us slept in a family room that night. Life was never going to be the same again.

The next morning, we were transferred to another hospital by ambulance, we didn't know when we would be home again so Kenny went home to get us some supplies. I was still traumatised but the ambulance men were really kind.

When we arrived at the hospital, Brooke was taken up to the oncology ward on a stretcher. I was crying and people were looking at me with sympathy. I kept thinking ‘I shouldn't be here’ and just wanted to grab Brooke and run home with her.
She had a bone marrow test to confirm that she had Acute Lymphoblastic Leukaemia (ALL) and had surgery to insert the port where she would receive her chemotherapy treatment. Then it all started.

Our princess was going to lose her beautiful hair that she had never even had cut. It was down to her bottom. I was distraught.

We were allowed to take Brooke home, but she kept being re-admitted to hospital. The first time with a temperature, as we had been instructed to take her straight back if it rose above 38 degrees. The second time with a serious infection in her gut which had spread to her blood. She had no immune system as a result of the chemotherapy and was so poorly that she needed to be monitored in a high dependency unit for two days. We thought she was going to die. It was devastating.

We are always on edge worrying about Brooke. I check her temperature all the time as I get so worried I’ll miss it. This means I don’t get much sleep because I’m awake until 3am checking up on her.

This whole journey has been incredibly hard emotionally and financially. While this was all going on, I had to take time off work and I knew I wouldn't be able to go back for the foreseeable future. I was also doing a university course which I couldn’t give up or delay if I wanted to finish the course before Brooke started full time school. We had to figure out how to survive financially.

I had a company car that I had to hand back when I stopped earning. This has made it very difficult to get to appointments as the hospital is two bus journeys away and Brooke isn’t supposed to go out because of the risk of infection. I rely heavily on my dad to help out and Kenny takes us when he can, but it’s difficult now that he is back at work.

Brooke is now waiting to start her 3rd phase of treatment which will last for nine weeks. Once this phase has started, the treatment will last around two more years. Phase 4 is the really intensive part so we expect to spend more time in hospital when that starts.

We were recently told that Brooke is on the A regime for treatment which is the best one we could hope for. I know deep down that my little princess and my family are going to come through this horrible situation and that we’ll be just fine at the end. Brooke is an amazing, strong little girl and we’re so proud of her.”

Charlie's Story...

6/10/2016

Charlie is one and lives with his mum, dad and seven year old brother Connor.

Charlie was diagnosed with cancer after developing a black eye, lumps on his head and neck and becoming very pale. He was only 10 months old and generally a very happy and healthy baby, so cancer was the furthest thing from anyone's mind.

Following a GP visit and an urgent blood test, Charlie’s parents were given the news no parent wants to hear "your son has cancer".

“Our hearts were broken and our world changed forever”

Charlie was rushed to hospital where tests and scans, confirmed he had stage four, high risk, neuroblastoma - one of the most aggressive forms of childhood cancer.

Charlie's condition was serious, he had a tumour the size of a grapefruit in his abdomen, plus tumours behind his eyes, in his chest, behind his liver, in his facial bones, in his spine, ribs, pelvis, shins, base of his skull, and a large tumour in his head, which was squashing his brain. The cancer had also spread to his lymph nodes and bone marrow.

“His tiny body was completely taken over by cancer”

Charlie immediately started 70 days of rigorous chemotherapy, it was called Rapid COJEC - one of the most intense chemotherapy regimes in modern medicine. However, Charlie did really well and had minimal problems - the Doctors were amazed.

“His surgery was the longest six hours of our lives”

Next he had surgery to remove the primary tumour in his tummy, it took six hours but he recovered well and 12 days later he started the hardest part of his treatment - a stem cell transplant.

Charlie became very poorly during this phase of treatment. He suffered with VOD, a life threatening liver complication, which delayed his recovery. He spent nine weeks in isolation, which was very tough on the whole family as they were split up for such a long time!

Super Charlie really is an amazing little boy. He has coped so well with everything that has been thrown at him, even managing to raise a hand for a high-five with the nurses when lying on the bed in pain. Even when he is at his worst, he never stops smiling!

Charlie is a true superhero!

He is now undergoing a European trial called immunotherapy to try to prevent his cancer from taking hold again. There are lots of side effects to this treatment, the main one being nerve pain, but thankfully Charlie has been given a lot of pain killers to help.

A recent scan has confirmed that there is no evidence of neuroblastoma in his body now, which is great news!

Charlie’s immunotherapy will continue until December, and then his radiotherapy will start in the early part of 2017.

Before Charlie was diagnosed, Mum was a nurse. When Charlie started his treatment, she had to give this up to care for him full time so the family income was drastically reduced.

Charlie’s family have spent the last year surviving on dad’s income, but now they are feeling the financial strain without mum’s income too.

Childhood cancer costs families an additional £600 every month*

*Source: http://www.clicsargent.org.uk/news/01-09-2016-cancer-costs-financial-impact-childhood-cancer-revealed

Kimberley's Story

29/4/2016

On 13th May 2015, Kimberley's family heard the words that no family wants to hear; it is cancer.

At the time Kim was 13 and had been experiencing pain in her calf. She was referred to the hospital to have a scan and only a few hours later her mother, Kellie, received a phone call to say that Kim had a tumour.

Kellie said that she feared it was cancerous from the very moment they mentioned the word tumour. Her father on the other hand tried to reassure her that life wouldn't be that cruel.

After more tests, scans, x-rays, blood tests, biopsies, and lots of anxious waiting, Kim was diagnosed with Ewing Sarcoma - an extremely rare form of bone cancer in children. In fact this particular type of cancer only affects 30 children per year in the UK.

Treatment
Kim needed extremely intensive and aggressive chemotherapy with, what her oncologist say, were one of the most horrendous cocktails of drugs there are. This caused severe mucositis, burning in her hands and feet, the inability to walk at times and ulcers in her mouth and digestive system. The ulcers caused extreme pain and discomfort, so that she was unable to eat or drink. Like all chemo patients, Kim also experienced the nausea, vomiting, tiredness, weakness and hair loss, spending the majority of this year within the confinements of a hospital bed, away from her friends and family, including two young sisters who are six and three.

Amputation
Even after enduring all of those side effects for a period of four months, her consultants discovered that the tumour, although reduced in size, had wrapped itself around the neuro-vascular bundle within her leg. The difficult decision was made to amputate Kim’s leg to save her life. She underwent surgery just three weeks after her 14th birthday and spent the following week gaining strength so that she could go home with her family.

How You Can Help
Now Kim would love a life-like silicon leg with an electric knee - which is not available on the NHS. She also dreams of having a prosthetic blade so that she can get back to doing the sports she enjoyed doing before she was diagnosed, and possibly one day be a Paralympian!

A life-like leg with electronic knee will cost approximately £60,000, and running blades are around £10,000. Kim’s family and friends have raised around £40,000 and now, with your help, we’re hoping to contribute towards to the remaining amount needed.

Kim has remained positive throughout her treatment and shown such a strength of character for someone of such a young age. With your help, we really hope to help Kim achieve her dream!

Shannon's Story

5/2/2016

Shannon is ten years old and was diagnosed with leukaemia on 7th November 2015.

Shannon developed a purple prickly rash on her legs as well as lots of little bruises all over. She was taken to a local minor injuries unit where the nurse arranged for her to see a GP that afternoon. The GP sent her to A&E for blood tests where it was discovered that Shannon had leukaemia.

Shannon's mum told us...

"I literally fell to pieces, but it was game on being strong for Shannon so she had no idea how scared we were. It was such a daunting time it felt like I was having an out of body experience looking at another family going through this. Hearing about the 2 years treatment plan was so scary and yet hopeful at the same time. Shannon was so poorly and needed antibiotics, blood product transfusions, plus lots of chemotherapy and bone marrow aspirations. This was a whole new world. Life was turned upside down for our while family.

It was very hard telling Shannon she had cancer because my mum is terminally ill with cancer and the kids know this. We knew she would be scared she was going to die. We explained that it was different and could be treated. We also had to tell her that her hair would fall out too, which it did after just two weeks!

Shannon is often unwell and has spent a lot of time in her shared care hospital for blood products. This has been very hard on her twin sister, Isobel, and her older brother, Justin.

It's very hard for Shannon but she remains strong and spirited. She has lots of walking issues now which we hope will go after chemotherapy."

How We Are Helping
Shannon’s mum can’t work while Shannon is receiving her treatment. We are helping with financial assistance to cover the unexpected costs that come with childhood cancer, including expenses like hospital car parking costs, food in the hospital café/restaurant, plus increased heating and electricity bills while Shannon is off school, because her warmth and comfort is paramount.

Click here to find out how you can raise funds to help.

Hope and Lucie's Appeal

12/11/2015

Hope is 11 years old and lives with her mum, dad, and younger sister Lucie.

In 2008, when she was just four years old, Hope was diagnosed with a brain tumour which could not be operated on. She underwent 18 months of chemotherapy but sadly relapsed shortly afterward. She has since relapsed again and again, and now Hope is receiving chemotherapy for the fourth time. She has become profoundly deaf in her left ear and lost hearing completely in her right ear.

Hope’s eight year battle with cancer means that she hasn’t been able to experience many of the things a normal 11 year old girl would have. Despite spending most of her childhood with cancer, and being unable to participate in many of the fun things her friend do, Hope is a wonderful, positive and happy girl.

Hope’s sister, Lucie, is nine years old, and she is a massive support to Hope. Sadly, Lucie has a disability herself. She was born with a form of Congenital Myopathy which is a muscle condition. As a result of this condition, Lucie is fed using a gastrostomy feeding tube and must use a ventilation machine at night. She also has no formed hips or sockets, along with a whole host of other problems. Regardless of her disability, Lucie is incredibly brave and intelligent. The girls had another sister called Grace, who had the same disability as Lucie, but sadly Grace died just nine hours after she was born.
How You Can Help

As you can imagine, the girls needs are very demanding on mum and dad’s time, and although dad works full time, they are only just making ends meet. We have been supporting their family emotionally and practically since Hope was diagnosed but now they need our help financially too.

Click here to find out how you can raise money towards our appeal for Hope.

Hope and Lucie's mum has given us a wish list of items that would make their Christmas extra special this year:

A bedroom makeover
Clothes
Pyjamas
Visit Madame Tussauds in London
One Day Zookeeper Experience
Volunteer at Battersea Dogs and Cats Home
Stay in a hotel and order room service
Meet Zoella from YouTube
Books
Art and craft items
Washy tape
Nail varnish
Lip balm
iPad
Wii U
Headphones
Our Generation Doll Sets
Board Games
Solar pool heater for next summer

If you would like to donate or purchase any of the items in this list, please contact Vicky Nash.

Lia And Her Mum Battle Cancer Together

26/8/2015

Lia is nine years old and lives with her mum, dad and two younger sisters.

In February, Lia’s family received the devastating news that her mum, Je-Anne, had an aggressive form of terminal lung cancer. The cancer has also spread to her bones, making normal daily tasks often impossible to do. Je-Anne is only 26 and as a non smoker her diagnosis is disappointing beyond belief.

Sadly, exactly a week after Je-Anne was diagnosed, Lia was also diagnosed with Acute Lymphoblastic Leukemia, a cancer of the blood. She had been experiencing pain in her feet but had been reassured that it was just tissue damage. When the pain didn't go, mum insisted that she was tested further and a blood test revealed the shocking news that Lia had Leukaemia. Lia is now in the throws of her own chemotherapy (and is still smiling!) but her prognosis is good and it is hoped that she will make a full recovery. The bitter sweet reality of the situation is that mum may not be here to see that happen.

Mum has shown real determination and courage, with her family and their future together at the forefront of her mind. Like most of us, she has dreams and aspirations for her family that she would love to be a reality, but she continues to worry about finances. How will her family pay for her funeral? How will her partner afford to look after the girls?

We are fundraising to make life just that little bit easier for JeAnne, her partner Dean, Lia, and her two sisters in the times ahead.

If you would like to make a donation towards our appeal for Lia's family, or to our Care Grants project, please click here.

Baby Callum's Story

18/5/2015

Callum was born in October 2014 and very soon after he came down with Bronchiolitis - the baby’s form of chest infection. In hospital, he was given an IV drip, oxygen to help him breathe and a nasal gastric tube through the nose to feed. During a routine blood test to make sure that Callum’s drip was working, doctors noticed his white cell count was high, and his haemoglobin and platelet count were low. After a blood transfusion and platelet transfusion he began to recover and was discharged but returned to hospital each day for blood tests.

On 18th December 2014, when Callum was just 11 weeks old, his parents were asked to take him to Alder Hey Hospital in Liverpool to have a bone marrow test as his white blood cell count was still surpassing his other bloods. The next day, less than a week before his first Christmas, Callum was diagnosed with B-Cell Acute Lymphoblastic Leukaemia (ALL).

ALL is a cancer of the white blood cells and it only affects one in every 150 children under the age of one, worldwide.

Callum is now travelling more than two hours every day to receive treatment at hospital. Mum has just finished maternity leave but is still at home caring for Callum and his four year old brother, Lucas. As a result, the family’s income has been reduced and, as is often the case, their outgoings have gone up. The regular cost of petrol to and from hospital, on top of parking and the day to day extras, such as food and drink during hospital stays, are taking their toll, so we are helping the family financially during treatment. This financial relief will allow mum and dad to focus their attention where it is most needed - on Callum and Lucas.

Dad left this message on our Facebook page in June 2015:

Hi guys, My family just wanted to write a note to say how increasingly grateful we are for your help whilst doing Callum's appeal. So far the money has helped us food shop, repay £40 debt off our pay and go utility meters and pay for diesel, just as Callum had a line infection which we could never anticipate/budget for, so your help really went a long way during that period for food, diesel and childcare. All of the staff I have spoken to are empathetic, kind and extremely warm hearted and we think you guys are wonderful. Thank you for being the light in our tunnel.

Dad sent us the following update shortly after Callum's first birthday in September 2015:

You can help to raise funds for Callum's family, and others like them by holding a 50:50 Competition, organising your own event, or taking on a sponsored challenge!

Hey, Callum is certainly 1 happy chappy these days! Even with all the pain, pokes and prods that he has to endure, he still smiles, laughs and continues to learn. He is now crawling, eating, and even beginning to dance!
With the help of Lennox, our family has been able to get through what we never thought we could have. When we came out from our 42 night stay at Alder Hey hospital, we had no one to initially turn to. For us to be able to sterilise everything and keep Callum warm, we had to use so much more gas and electric, which left us in debt. Our petrol bills were spiraling out of control and we were hitting a dark spot. We sent a request for a small grant to help clear a couple of debts and give us a little breathing space. Vicki got in touch from Lennox and told us just how they could help out. When I hung the phone up and told my wife, she broke down in tears, we couldn’t believe there was someone out there who was willing to help. It meant that the days I had to take off work (unpaid), were no longer jeopardising our family and we could now focus more on Callum's progress. Callum is now off intense treatment and is on maintenance, and things are forever improving. With Lennox's help, we have enjoyed the finer things in life, we have bought a swing, and have managed to take a small break in a less tourist filled place. I cannot stress enough how fantastic these guys are and how much worse off we would have been without the light at the end of the tunnel, being Lennox. You are amazing!
Much love to you all, you guys have been our rock when we needed it most!
From all of us here at the Tolley household, thank you soooo much!

hold a 50:50 Competition

Take on a challenge

Siblings: Jordan and Emma

6/2/2015

When Jordan and Emma’s aunt was diagnosed with cancer in her thyroid gland, tests showed that the cancer - Multiple Endocrine Neoplasia - was not only very rare but it was also genetic. As a result their mum was tested and also diagnosed with the condition, which meant that Jordan and Emma had a 50% chance of inheriting it too. They were both tested and to everyone’s disbelief they both tested positive!

Multiple Endocrine Neoplasia (MEN) is a rare cancer syndrome caused by a gene mutation. It greatly increases the risk of tumours in the body and these tumours can be either malignant (cancerous) or benign (non cancerous).

Jordan and Emma’s thyroids both showed signs of cancer and they needed surgery immediately. They were admitted simultaneously and had five and six hour operations to remove their thyroids and the cancer. They were in hospital for 8-10 days and mum and dad stayed with them until they were allowed to come home.

Sadly, the condition can never be cured. It is slow growing but also very aggressive. The children now take daily medication and have tests in hospital every 16-20 weeks so that they can find any new tumours quickly and make sure the cancer doesn't spread. They will also be admitted for special screenings every 12 months for the rest of their lives.

Jordan and Emma are so very brave and try to cope with all the hurdles that MEN throws at them.

Since the children’s diagnosis, dad has been forced out of work to care for the whole family full time. As a result they have very little money to live on and they are struggling financially.

With your help, our Care Grants project can offer a financial cushion for families like Jordan and Emma’s.

Click here to read about some of the other children we have helped.

Matthew's Appeal

18/9/2014

Matthew, aged 13

About Matthew...
Matthew is 13 years old and lives at home with his dad, David, and nine year old brother, James.
Matthew and James sadly lost their mother to renal cancer in March 2007, just 11 weeks after losing their grandmother to cancer on Christmas day. Their grandfather also lost his battle with cancer a few years later.

Matthew's Story...
Matthew was diagnosed with Acute Lymphoblastic Leukaemia (ALL) shortly after his 13th birthday and has been receiving treatment ever since. He is currently on steroids, which has drastically increased his food intake, and has had numerous blood and platelet transfusions in the last few weeks alone.
Matthew is so brave and never complains about his diagnosis. He was even overheard telling a nurse "it's better that I have this rather than someone else, our family is used to it".
When speaking to Matthew, it's clear that his biggest concern is not for himself but for his younger brother, James, who doesn't remember his mum as well as Matthew because he was only two when she died. This makes Matthew very upset and just goes to show how selfless and caring he is despite everything he is going through.

How We Help...
Matthew lives more than 100 miles away from the hospital where he receives treatment at least once a week. In between these appointments he also has expected and unexpected trips to his local hospital which is more than 20 miles away from home.
As a single parent, dad is unable to work whilst Matthew is being treated so his income has been significantly reduced and it has become difficult to afford the day to day things that many of us take for granted.
We are providing regular Care Grants to the family to help towards travel costs, hospital parking and food shopping.

Matthew out cycling with his brother and dad

Matthew and his brother, James, aged 9

Oliver Needs Help Getting to GOSH

30/4/2014

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Although two year old Oliver is registered disabled, he is not entitled to Disability Allowance until he is three years old, which means that mum does not have access to Motability Allowance either. Oliver's cannot travel to his GOSH appointment by public transport as it makes him distressed and the risk of infection is too high, plus with four sisters this would be very expensive!

As we all know, petrol and hospital car parking is also very expensive so with your help we will provide funding so that Oliver can travel to and from his regular hospital appointments in the comfort of a family car.

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Ollie's New Sports Goggles

4/2/2014

Ollie is 4 years old and has bilateral retinoblastoma, which is a cancer of the eye. After receiving chemotherapy directly to his eyes, Ollie lost one eye and now lives with an artificial one. We provided Ollie's family with a Care Grant to purchase some cool sports goggles which will protect Ollie's remaining eye and allow him to take part in sporting activities with other children at school. Click here to see thank you cards and photos from families we have helped.

Oliver's New Playground

29/10/2013

Oliver was diagnosed in March 2012 with Acute Lymphoblastic Leukaemia. Before he could undergo treatment, he had to be put into intensive care because his kidneys were failing. Oliver’s mum, Rebecca, said “It is the most devastating news any family can take in. It felt like our world had ended”. Oliver is now receiving aggressive chemotherapy, which he will continue with until June 2015. He also receives oral chemotherapy daily and lumbar punctures every three months at Addenbrook’s Hospital in Cambridge.
The cheeky seven year old has one older brother, Phoenix, and a twin, Mackenzie. All three boys love playing outdoors but their garden is on a very steep slope. With the help of our wonderful supporters, we levels out the garden and created a patio area for the whole family to sit outside and spend time together. We also surprised Oliver by granting his biggest with for a trampoline and enclosure in his garden.

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