Day 26, Childhood Cancer and Histio Awareness Month. Tali’s story; Langerhans Cell Histiocytosis

Huge thanks to Sam for taking time to share Tali’s story and helping to raise awareness.  it’s not easy to find the time to write with two children, never mind seven! You are a super mum!

“My 6 year old son had been complaining for a couple of weeks about intermittent eye pain. So after trying the usual, painkillers, antihistamines incase it was an allergy, he was still complaining, we took him to the opticians, lots of my family wear glasses, so it seemed that maybe he needed them too. This was the 29th of March 17. His eye test was fine, nothing to see, no problems, they where very thorough, even doing a pressure test, everything came back perfect. No glasses needed. So with our minds at ease, we continued our lives, he still complained occasionally, but there was no real pattern to it, nothing we could pin down.
By now the children had broken up for the Easter holidays, and Tali just wasn’t quite right, he was more tired than usual, I put it down to him being tired from a long term at school. Then he went off his food, he picked at it, I thought perhaps he had picked up a tummy bug, and dreaded the fallout that would entail. 7 children, and a tummy bug; every parents nightmare. By the early hours of Saturday the 14th of April, he had developed a fever, shortly later he was sick. By the morning he seemed much better, and more himself. So much so I took a photo and posted it on Facebook telling my friends, how much better he was doing. That photo will haunt me for the rest of my life. It wasn’t until the evening that Tali was feeling poorly again, and he fell asleep on the sofa. I picked him up so I could put him in his bed, and I noticed a lump on his head, by his temple. It hadn’t been there the day before, this was new, I looked back at the photo I took, and I could see the lump, why hadn’t I noticed it earlier? He was warm again as well. I showed my husband, and we called the doctors, we got seen a few hours later, and after much questioning about ‘had he banged his head’, the doctor sent us to the children’s ward. More questions; has he fallen over, has he hit his head, are you sure? Once I finally convinced everyone that no, he had not injured himself, it just appeared, they then started investigations.
Blood tests came first, having to hold my little boy still while he fought the doctors was awful, but I knew it was necessary. We stayed overnight, and they kept a close eye on him, his blood work came back fine, we where sent home, and told he needed an urgent ultrasound. On the Tuesday I called the ultrasound department (bank-holiday Monday) and asked after his appointment. They gave me one for the next week, I knew he needed it sooner, and my inner lioness came out, I demanded a sooner one, and thankfully they listened. We got one for that Thursday. The day of the scan arrived, and the lump was bigger, they did the scan, and from their faces, I knew something was seriously wrong. We went straight back to the ward, and were admitted straight away. They did more bloods, and ordered an MRI scan and an opthalmology review, because by now the lump was putting pressure on his eye. Bloods once again came back fine, the MRI happened the next day, after many phone calls from various doctors and nurses chasing it up. The nurse in opthalmology also chased it, she took one look into his eye, and she saw something that made her worry. I will forever be grateful for her that day.
So, the MRI finally came, Tali was worried about it, a play therapist called Sarah came with us, my son was not asleep he was wide awake, and he was so amazing. He got a little worried about 10 mins in, those things are so noisy! Then just as we thought we would need to pull him out, he fell asleep. He stayed asleep for the rest of the scan, all 90 mins of it. Halfway through they added contrast, and the play therapist left. This was the first time I had been on my own since it all started, I fell apart, I knew why they had added contrast, I knew it was serious. Once back on the ward, things happened quickly. My husband and I where whisked into a side room, while a nurse sat with our other children, and then the words no parent ever wants to hear. Your child has cancer, we’ve found a tumor in his head. My world stopped. Then, I took a deep breath, and asked them what happens next? The next thing was an ambulance trip up to the nearest children’s hospital.
Once there he was on neuro OBS, yet more blood tests, scans, CT, x-ray still we had no diagnosis, things seemed to move slowly slowly, he needed a biopsy, the tumour was growing almost infront of my eyes. His eye was now being pushed forward in the socket due to the size of the tumour behind it, he was loosing his sight. Several days passed, and eventually the biopsies where done. Those days dragged, at one point I was told my son was the sickest child on the oncology ward, because they didn’t know what was wrong, so he wasn’t getting any treatment, he was getting sicker and sicker by the day. It took two biopsies to get a useable sample, the second one made such an amazing difference.
When the surgeon went in, they discovered that the tumour was mostly fluid filled, full of bone fragment and blood. Once he recovered from the surgery and his drains had been removed, we went home to wait for the results. We went back for those results on the 5th of May. I had done lots of research by this point, so I knew the 3 most likely types of cancer it could be, the treatment protocol, and the mortality rates. I was ready for anything she had to throw at me, I had my note book and pen, that I had written everything in up to this point.
We walked into the room, and straight away she told me it’s LCH. I was so relieved, yes it could of been better, but it could of been much worse too. LCH seemed like a better option than most, and I was ready for it. We started chemo almost straight away, 9th of May was his Hickman line insertion, bone marrow biopsy and aspiration, and chemo. The first 6 weeks went like clockwork, he was incredibly well, and coped amazingly well. Week 7 hit him like a train, he had infection after infection, and spent the next 6 weeks having more time in hospital, than out.
He then had a good patch until November when he was in and out of hospital with yet more infections, all the way through until February. On the 9th of May 2018 he rang the end of treatment bell, it’s too early to say how successful the treatment has been, and I have learnt along the way, that LCH isn’t the soft option, the better option, the easier one. It’s every bit as bad as other types of cancer, and just as destructive. My son had several very serious infections, and came close to sepsis at least once. I feel so blessed to still have him here with us, but also so scared for the future and what it may hold.”

Day 26, Childhood Cancer & Histio Awareness Month. Poppy & Evie’s story; Langerhans Cell Histiocytosis

I know every story has been hard to read, process and in some cases believe but when Lisa got in touch with me I genuinely wondered how this could happen to one family.  Yet again though, in great adversity this family has shown such unbelievable grit, compassion for others and determination to make things better for other families in this situation. truly inspirational.

Poppy & Evie’s Story

Poppy and Evie are identical twin girls. They are three years old. From four months old they showed signs of being unwell. Although they were constantly vomiting and had blood in their nappies they were repeatedly diagnosed by a string of doctors as having an allergy to milk.  When they were only 10-months old, Poppy & Evie became seriously ill with gastroenteritis and were admitted to Addenbrooke’s Hospital in Cambridge.
Four weeks later, on Christmas Eve 2015, we were told by a consultant paediatric oncologist that Poppy & Evie were suffering from a very rare form of children’s cancer – Langerhans Cell Histiocytosis (LCH).  LCH is the most common of the histiocytic disorders.  It is very uncommon and is believed to affect 1:200,000. It is a ‘multi-system’ disease that can simultaneously affect many body systems, such as skin, bone, lymph glands, liver, lung, spleen, brain, pituitary gland and bone marrow.  A doctor later told us that the disease had spread extensively, affecting their intestines and bowels, skin and ears. Perversely, it was only by the sheer ‘good fortune’ that an experienced dermatologist recognised a tell-tale symptom (a rash on their tummies and back) that the girls were diagnosed with LCH before the disease had affected their bone marrow, brain or glands. Nevertheless, they were in a very bad way.

Apart from very occasional, brief respites, the girls spent most of 2016 in hospital. They underwent three different series of chemotherapy treatment; each one stronger than the previous. The severity of the treatment is life threatening in itself and they were twice admitted to paediatric intensive care.  For most of that time they were confined in one room because the chemotherapy temporarily wipes out the immune system and they become neutropenic, making them susceptible to just about every infection and disease imaginable. The girls had nasal tubes and chest (Hickman Line) tubes inserted for all of that time so that milk and medicines such as the chemotherapy drugs could be administered around the clock. Throughout all of this, Poppy and Evie handled everything that was thrown at them with remarkable bravery and fortitude. Unless they were feeling very unwell indeed they were smiling and laughing. They inspired everyone around them including the doctors, nurses and medical support staff and the parents of other patients in the oncology ward.

In January 2017 we were told that Poppy & Evie were in remission. They then began a 6-month maintenance programme involving a relatively low dose of chemotherapy administered every month during a 4-day stay in hospital. The treatment was designed to eradicate any remnants of the disease that may still have been in their bodies.  There are no longer any symptoms or visible signs of the cancer. It has gone. However, LCH is a horrible disease and can be very stubborn. It has a tendency to re-occur so the girls will have regular check-up’s and blood tests virtually until their late teens/early 20’s.  Whatever happens, we know that as a family unit and the bravery and strength of Poppy and Evie, we will handle it.  They are truly remarkable little girls.

Their nasal tubes and Hickman (chest) lines were eventually removed. They are absolutely thriving. They are full of fun and energy , eating like horses and regular little chatterboxes. They are an absolute joy. Having finished pre-school they will begin attending nursery school in September.

Research into LCH and hystiocytosis is not funded centrally by the government because it is so uncommon.  In fact the NHS does not record cases of the disease for statistical purposes. To be fair, it is just one of more than 4000 rare diseases that the NHS have to contend with. However, the lack of awareness within the medical profession as a whole means that a great many cases go undiagnosed or are diagnosed too late. This is where we, and hopefully you, come in because as a family, we are determined to help change that. We want to help other children and their families avoid going through the nightmare that we have experienced and continue to experience. We also want to find a way to say thank you for the fantastic medical care that Poppy and Evie receive from the NHS. There is only one registered charity that raises money for medical research into LCH.  The charity is Histio UK .  It is run by a wonderful lady, Lynn Jackson. 90% of the funds that they raise go directly into desperately needed medical research. With your help we can make an enormous difference. To achieve our objectives, and to honour their bravery and inspiration, we have established the Poppy & Evie Smile Campaign. All of the money that we raise goes to the Histio UK charity.

Day 26, Childhood Cancer & Histio Awareness Month. Luca’s story; Langerhans Cell Histiocytosis.

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Emily tells Luca’s story;

“Luca was 4 months old when we noticed he had a rash which looked like nappy rash.  It started to appear on his back, torso and then on his scalp (which looked like cradle cap).  He was always full of cold and could never seem to shake it off.  He had pea sized lumps in both sides of his neck and after 4 visits to the GP we got referred to a paediatrician for an appointment.  However, we never made that appointment because while we were waiting Luca’s lymph nodes became huge…..and I mean HUGE.

Luca was 9 months old when this happened and we rushed him straight to our local hospital were they treated him for bilateral ear infections as the skin in his ears was effected too. They took bloods and observed the lymph nodes.  After 3 days and no improvement, they made us an appointment at Royal Manchester Children’s Hospital to see an oncologist who diagnosed him with multisystem LCH within 2 hours.  That is were the story starts.

Luca has liver, skin and lymph node involvement.  His risk organ is the liver and he had a blood transfusion that night.  The following day he had a hickman line inserted along with multiple biopsies of his skin & lymph nodes, he had a bone marrow aspirate and numerous scans.

He then started first line treatment for 12 months, he reacted brilliantly to the treatment and and when the 12 months was over he had his line removed, but it came back within 8 weeks.

It only came back in his skin and lymph nodes and so he had a port fitted and started second line treatment.  This was horrendous. The chemo made him so poorly; temperature, sickness, lethargic.  We were admitted every 3rd week for 4 days while he had his treatment.  He then moved on to 18months of maintenance chemo.  They kept his port in so he had monthly port flushes, thumb pricks and consultant checks until he finished treatment in MAY 2018.   He had his port removed in July.  We have still to ring the end of treatment bell as we don’t want to rush things.  He is doing well and started school earlier this month.”

I share Emily’s reluctance to rush in to celebrating that treatment is over, the disease is so sneaky and unpredictable that just when you allow yourself chance to feel things are normal it can come back.

I hope Luca continues to do well and have clear scans.

 

Day 26, Childhood Cancer & Histio Awareness Month. Chloe’s story; Juvenile Xanthogranulom (JXG)

Sarah tells us about her daughters misdiagnosis and treatment for one of the more rare hsitiocytic diseases JXG.

“Chloe she was diagnosed in January 2018 this year with a rare disease in the histiocytosis family called Juvenile Xanthogranulom (JXG).

Chloe kept getting viral infections and ear infections from the start of January 2017 so I kept taking her to the doctors then on one visit to the doctors we got referred to Blackburn Hospital that same day to see a consultant.  This is where they kept treating her with antibiotics as her right ear would hurt with infection and was swollen and she had a very narrow ear canal, but the antibiotics never did anything. They sent Chloe for a CT scan in October where it showed that her skull bone had been affected. We didn’t get to know this information until December.  We got a call to go into Blackburn Hospital were they told us we had to stay the night.

The next morning the unthinkable happened and Chloe was diagnosed with Langerhans Cell Histiocytosis.   We were transferred to Manchester and Chloe was placed under a consultant called Guy Makin.  They took a biopsy in January which showed the diagnosis was actually Juvenile Xanthogranuloma, while she was having her biopsy she also had a hickman line fitted so she could start IV chemotherapy and oral steroids.  Chloe had 12 weeks of this treatment but it was not working to stop the disease.  So we were advised she needed to try other drugs available on clinical trials in London.  She was on this trial for 3 months.  Making the decision to go on a clinical trial in London meant went we had to travel every week but in July we moved to monthly trips.  She’s had no side affects and is doing great in herself.  It’s been very difficult going from chemo to treatment in London as she is under St Thomas for eye checks, Evalina hospital for ECG and echo to monitor her heart but most checks at Royal Marsden were the clinical trial is conducted and she has regular skin & blood checks, MRI and X-rays.

I want to get the awareness out there as much as possible and hope one day to meet someone else going threw same as Chloe and be able to help them.”

Day 26, Childhood Cancer & Histio Awareness Month. Sadie’s story; Langerhans Cell Histiocytosis.

Sadie Louise Boak was diagnosed with multi-system Langerhans Cell Histiocytosis in November 2017 it’s been a hard 9 months in and out of hospital for the family.

Before she was diagnosed they were constantly at the doctors with her head, she had what they thought was cradle cap, but far, far worse. She had the same rash in her groin and under arms. She also had multiple ear infections and started to grow teeth that she shouldn’t have had until she was older.  When the family finally got her diagnosed she had it in her bones, her spleen and liver.  She has had 3 different types of chemo which unfortunately have not worked and last week the family received the news last that she will need a Bone Marrow Transplant.

Good luck to Sadie for her ongoing battle.

 

 

Day 25, Childhood Cancer Awareness Month, Story 2. Levi; Nephroblastoma (Wilms Tumour)

The second of today’s stories is another little boy who was diagnosed with a Wilms Tumour.  Earlier in the month we heard about Ryan who was diagnosed around the same time as Jack.  Kim, Levi’s Mum tells their story:
“My son Levi-Carter is a lovely, bubbly, hyperactive 15month old little boy.
He wasn’t always this happy and bubbly. I was always at the doctors. He had very bad Eczema, we got referred to a Dermatologist, then it was constant coughs, colds snotty nose, I was constantly taking time off work, I just thought it was normal (baby’s pick up every cough/cold going).
15th December 8.20pm it was a normal night, (we thought) I was getting me and Levi ready to get in the bath I had run.  I took Levis nappy off and obviously Levi had to have a wee, (Levi wee’d every time the air touch him) when I seen it wasn’t a normal wee, it was RED!! I instantly rung my next door neighbour to come and help, and my mum. They calmed me down and told me to ring an ambulance and to get an over night bag ready.
We waited an hour and decided it would be quicker to get my Dad to drive us instead, we got to the hospital, got checked in, the nurses did Levi’s observations and sent us to a cubicle, we needed a urine sample, I waited patiently with a bowl for 3 hours to catch a wee as I kept missing.  We finally caught the most tiny dribble, but it was enough to test, we waited for results and they eventually came back as a water infection, and prescribed antibiotics “come back in 3 days if these don’t clear up his infection” and went home, happy with what they told me I started the antibiotics, 3 days had past, his wee was clearing but still had traces of blood, took him back to the hospital and they did another urine sample, still coming back as a water infection, they prescribed a different antibiotic, and sent us home again, we got home and it was roughly an hour later I got a phone call;
“Hello, is this Levi-Carters mum?”.
“Yes, can I ask who’s calling?”
“It’s the doctor you seen yesterday at Wigan infirmary, we have found out that Levi’s infection is resistant to antibiotics we have prescribed, can you come in for an ultrasound tomorrow at 8.30am?”
Me and Levi had an early night sleep ready for the ultrasound.
We arrived at Wigan infirmary ready for our ultrasound, I met the sonographer who was going to scan Levi, she made me feel at ease, while Levi was being scanned I was constantly looking at the monitor, (not having a clue what to look for🤷🏼‍♀️) it was over… I asked the dreaded question;
“Have you found anything?”
“Yes, I shouldn’t really say, but his Right kidney looks enlarged and of a different texture”
I didn’t have a clue what that meant at this point, so we went up to rainbow ward, ready to speak to doctors and other nurses, I didn’t know what was going on around me or even in my head, the doctor asked a student nurse to sit with Levi while I got taken into a treatment room to have a talk, they sat me down and said “ we’re really sorry, but the good thing is we’ve caught it early and it hasn’t spread” I knew.. it was the big C – the dreaded  Cancer!
They let me get my family and then ambulanced us over to Royal Manchester Children’s Hospital, straight up to Ward 84, where they did a CT scan,an MRI scan, Biopsy and fitted a Hickman line, I was so scared.
How had I missed that my son had cancer? He had no lumps or growths until a few days after being admitted to 84, then his right side of his belly grew and grew and grew, on the records at Wigan the tumour was 98mmx96mm, we met with doctors, consultants, Clic Sargent social worker and our Macmillan nurse, and we had a ‘plan’; 4 weeks of chemo- Vincristine and Actinomycin, surgery at 6 weeks and then clean up chemo. Then we have to wait for his check up and scans.”

Day 25, Childhood Cancer Awareness Month. Amber’s story; Pilocytic Astrocytoma (Brain Tumour)

I can’t for the life of me remember who put me in touch with Lara but whoever you are I just want to say thanks.  She has become part of my online support gang and we’ve exchanged many messages in the last couple of months.
One of the saddest things about this story is just how long it is, and I dont mean that Lara has gone on too much.  Imagine having to endure almost a decade of your child being in and out of hospital?
I was worried that I would have enough stories to fill the month but in actual fault I have ended up with more than enough and so the last few days will involve a couple of stories each day.  The first of today’s stories is shared by Lara who is the incredible Amber’s Mum.
“Looking back over the last eight and a half years its hard to know where to begin to write my daughters story.
She was born in 2009 and despite being a smiley baby soon showed signals of there being something not quite right.
An ophthalmic consultant ordered an MRI scan for her after I had taken her to the doctors with a wobbling eye.
A few words tore my world into pieces. “We have found something not very nice in Amber’s head”. Hospital staff had to scrape me off the floor. Tests and surgery followed. For nine hours my 8 month old baby’s head was in the hands of specialist neurosurgeons. Hearing her cry as she was wheeled onto the ward afterwards will remain the best sound in my life. She was alive.
She was diagnosed with a pilocytic astrocytoma, although benign in ways the fact of where it was meant it would have big consequences for her. A week later with a cut from ear to ear snaking over the top of her head little Amber came home with us.
For some this tumour type does not need further treatment. They can live fairly ordinary lives with monitoring but no need for chemo or radiation. However three months after the surgery the tumour had grown and it was time to start chemo to halt its progression.
For 18 months Amber had a combination of medicines which gave good results, the tumour shrank. At times she was so sick with it she needed to be tube fed for her to get nutrition. The worst moment was when her hair fell out. Stroking her head would leave your fingers tangled in her soft light brown strands.
Once it was complete we tried to move forward. Routine scans over time looked positive. I dared to dream this was behind us.
However, at 38 weeks pregnant with my second child, I learned that this tumour was not finished with her. It had grown back and the 18 months of respite was over. The gloves were back on ready to fight again.
So, Amber at 4 years old and her brother only four days old I hobbled back into Sheffield Childrens Hospital after having just had a ceasarean section. I tried to hold my head high and paint on a smile when my sanity was on its last thread. It felt much crueler the second time round. Not only was it robbing Amber of her childhood again but now it was dragging my baby boy into it. Anger, sadness, fear, rage, just some of the emotions that coursed through my body.
She tolerated well another year of chemo and it was ended with a routine scan. It had grown again.
That time, knowing she would need to switch to another chemo wasnt quite the shock to my system as it had been before. I think by then I was being numb. Emotionally exhausted.
Three months of a different treatment, scan results time, it had grown again. I could only shake my head and swear at the screen as I looked yet again at the black and white image of her head. At the centre the large mass glowing white.
OK, lets try another chemo we decided. Three months later…again, I sat looking at the same screen hearing the same words. It felt like ground hog day. There was no let up. No rest for my darling girl.
So again, another chemo. This one was the last one liscenced for her tumour type. I couldn’t even begin to process the severity of the situation we were in. The first scan was a big deal we had not got past this with the previous two protocols. The consultant looked at me and explained it was still growing. This time though we had to give this treatment longer as all the evidence showed this one should work.
I am blessed that the years of this struggle has allowed a bond so special to develop with Amber’s consultant. I trusted her wholly. I was right to, it worked. For a year she battled chronic sickness, seizures, extreme lethargy but completed the course with good results.
I refused to believe that it was over however. Not like before, I could not switch off and feel safe.
Instinct proved right. Sadly.
December 2016’s scan showed us Amber needed surgery to drain cysts that were causing pressure to build in her head. But they didn’t just want to do that, they wanted to try reduce the size of her tumour again. Then they wanted her to go to the states for proton beam radiation. Treatment that is supposed to be less damaging to surrounding structures whilst delivering maximum damage to the target area.
Another nine hours she laid on the surgeons table. Nine hours I held my breath aching to be reunited with her. 48 hours later Amber walked out of the hospital looking like she had been in a boxing match yet acting like she had been at a spa break. Nurses had never seen a recovery like it. 5 weeks later we were all aboard a flight to Oklahoma to begin a three month period out there. We had 10 weeks of life changing experiences. I will forever look back at that time as being the most bitter sweet experience.
Once we were home I felt so disoriented. The first five months of 2017 had been like nothing I had ever experienced. As a family we were exhausted but hopeful.
Who would’ve thought that around the corner was our riskiest battle. With Amber’s tumour you generally have no idea what is going on with it until scan time. There are markers you might look out for but until it’s there on a screen you can blame your attention being drawn to those markers on the very real phenomenon that is scanxiety.
Three months post proton Amber was shattered, perfectly normal. She had some swelling to her head, she hadnt had surgery that long ago, not unusual.
What I didnt expect was a phone call from her oncologist to say Amber needed bringing in for emergency surgery the next day as she had hydrocephalus and her brain had herniated out of a small hole she had in her skull left from surgery earlier in the year. Her life was at risk. We needed to act fast. This was only a two hour surgery this time. Naturally, she walked out 24 hours after walking in! It really makes no sense how she keeps up this record of amazingness.
Fast forward to now. It’s September 2018. Amber and Seth are tucked up sleeping soundly. Two weeks ago her scan showed her tumour is stable. Thats been the case since June 2017. She’s doing well at school and is a popular and funny young lady. She battles endlessly the side effects of the relentless battering her body has taken. She is growth hormone deficient, she is brain damaged, shes in early puberty and shes blind in one eye. But. She is here. More than can be said for so many of the little faces we have seen in the beds alongside hers. I am just climbing out of a dark hole that is PTSD and having sat and relive it all writing this I am reminded of just how difficult life has been.
I’m torn between wishing it had never happened and struggling to imagine life without so many of the people I have in my life through it all. I am greatful for every second of her time with me and live in awe of her incredible resillience.
Thank you for reading.
Be child cancer aware.”

Day 24, Childhood Cancer Awareness Month. Teddy’s story; Neuroblastoma.

I’ve talked about the online cancer community a bit in my previous posts. Emma is one of the Mums who I exchange messages with regularly. Words of encouragement, laughs and tears. Her page on instagram is filled with beautiful photos of her very much loved baby boy called Teddy.

Reading back through the posts before his diagnosis you can actually see the story unfolding unbeknownst to the family. Emma talks about that parental guilt of sending Teddy to nursery when he was a bit off and the guilt of being off work when he wasn’t well enough. At this time she thought he had just picked up one of the many things little ones pick up when they start mixing en masse with other kids.

Emma shares Teddy’s story so far;

“We first noticed signs of Teddy’s illness in February this year when he was 14 months. Of course we had no idea at the time that his temperatures and tiredness could end up being cancer. It wasn’t even close to being on our radar.

We’d had a wonderful half term (I’m a teacher) visiting friends in Barcelona and life was good. I had just gone back to work in January after my maternity leave and Teddy was at nursery three days a week and loving it. Towards the end of February he got an ear infection that really knocked him. He was put on antibiotics which cleared it up but he didn’t seem to get fully better.

For the next few months Teddy’s personality changed a lot. He went from being a happy, confident, easygoing toddler, to being clingy, tearful and always exhausted. He started not wanting to crawl and would just spend his time cuddled up on our laps. We took him to the doctor numerous times just to be told he was having back to back viruses and that it was normal as he had just started nursery and was building up his immune system.

So, accepted what the GPs were saying and put his personality changes down to the developmental leap he was going through, which happened to be all about clinginess.

At Easter he was diagnosed with an upper respiratory infection and gave him more antibiotics. But when these didn’t stop his fevers I just knew something wasn’t right. I remember Googling his symptoms and finding a thread on a parenting site where a mum was asking advice for the same symptoms. I trawled through the responses until I saw the mum had come back on the chat to say that the doctors had found a tumour in her little girl. I told Teddy’s Dad and said “What if he has cancer?!”, to which he replied “Don’t be so ridiculous”. Yes I said to myself, how utterly ridiculous and scolded myself for being hysterical. But a few days later after another trip to the GP we found ourselves in A&E after she agreed that he was definitely quite unwell but had no idea why. The A&E doctors knew why though. They knew straight away when they felt the lump and his bloods came back showing he was severely anaemic. But it didn’t sink in for us straight away, no one was mentioning the C word.

Not until he’d had a CT scan the next morning and the very blunt consultant with the awful bedside manner came to deliver the earth shattering news. The scan showed a mass of 10x10x10cm, filling up his whole body and starting to push his organs aside to make space. It was definitely cancer.

So here we are. Five months into treatment for Neuroblastoma. A very aggressive cancer that started as a tumour on his adrenal gland above his kidney, and spread to his chest, bone marrow and bones. Teddy has endured 8 rounds of chemo just 10 days apart consisting of three drugs each time, a 6.5 hour surgery to remove the remaining tumour, and high dose chemo with stem cell transplant that he is currently recovering in hospital from. That’s not to mention countless general anaesthetics, operations to test bone marrow, scans, injections, X-rays…the list goes on. After this Teddy will have three weeks of radiotherapy followed by 6 months of painful immunotherapy treatment.

But this is a cancer that likes to come back. The relapse rate is high. So we are also fundraising to get him to New York for further treatment to prevent this happening after all the NHS treatment is finished. So far Teddy’s cancer has responded well to the treatment, which is not always the case with Neuroblastoma, so we are hopeful that he will become cancer free and make a full recovery. But with cancer the future is always unclear and there are no guarantees.”

If anybody would like to help towards the inevitable cost of getting Teddy treated in New York you can follow this fundraising link.

Good luck for the rest of Teddy’s treatment. If anyone would like to follow the story Emma’s instagram page is @mamaandtbear go and give her a follow.

Day 23, Childhood Cancer Awareness Month. Mackenzie’s story; ALL

Mackenzie was born with genetic conditions called Noonan syndrome. he had key hole heart operation at 12 weeks then at 16 months old had open heart surgery.

In December 2012 he started to feel unwell; tired, not eating, no energy and then legs started to hurt. He lost weight and also was very pale.

He was diagnosed with acute lymblastic leukemia in May 2013. He had a hard long battle with lots of different infections like shingles & Glandular Fever while on treatment. He finally finished in July 2016.

He has now been diagnosed with mild ADHD. We now visit the oncology ward 84 as an outpatient every 6 months. He is doing well and started high school this year.

Day 22, Childhood Cancer Awareness Month. Lily’s story; relapsed ALL and Bone Marrow Transplant.

I believe that it takes a lot to shock me these days but this story shared by Lily’s mum Kerry left me completely speechless. If there’s anything that could be worse than your child being diagnosed with cancer while you lived in a foreign country it has to be what happened to this family.

“For almost 6 years we had been living in Thailand due to my work allowing me to experience such an amazing country of culture and people.  Lily had just turned 5 when we moved over there and attended a wonderful community based English International school.

In November 2015 we noticed a small lump on Lilys neck, we took her to the hospital to see the Dr who gave us anti biotics and said it was gland issue/infection.

That same week I noticed it wasn’t going down so took her back to the Dr’s (different one this time) who did an ultra sound and when we got back to his room in Thai fashion said “ dont worry its not cancer”!!!  Hadn’t even crossed my mind until then anyway…
He gave us some higher strength anti B’s and said it was glandular – so off we went again..

Then 24 hours later, Lily developed a fever and her neck swelled massively.  This was early hours of the morning and so we took her back to the same hospital and different Dr….This Dr saw something wasn’t right with Lily.  So we were admitted whilst they did tests, many many many tests.  After 3 days we were told we could go home, they found Herpes virus – I said but yes she has cold sores but thats it , surely this wont cause the swelling – are you sure ?   When I look back now It makes me laugh a little as it was Lily who didnt want to get discharged – she loved the hospital room 🙂 she said can we just stay one more night ??? 🙂  I said to the Dr that I would prefer that until they’re 100% sure what the problem is.

It turns out they did know but as was the Thai way, they couldn’t tell us face to face until they managed to get hold of the haematologist who would have to break the news to us in person. This Dr was Dr Piti, a gentle young Dr who turned out to be our saving grace.  We loved him and trusted him to get Lily through this.

He broke the news that she had cancer, AML and was so poorly that she had over 85% leukaemia cells in her marrow and we couldn’t take her back to England just yet.  She needed urgent treatment to start straight away he told us.

I remember the world seemed to stop turning that day or I wanted it to anyway, we were in complete shock and just being so so far away from home made it all that more surreal really.  I had only heard the word Leukemia, didn’t have a clue what it was or what really chemotherapy was and what it did.   We didnt have Mcmillan or CLIC, you don’t have support from any organisation or other families going through the same experience over in Thailand – Lily was the first ex pat kid they had treated with Cancer.
It was new for us all, so we the internet became our best friend and where we had to do our research. Plus with the help of my Uncles brother in England who was a great support and gave us advice being a medical person himself.  He would dial into the calls we had with the Dr’s to ensure we were getting the right treatment and advice.

So Lily needed to have 4 cycles over approximately 6 months to try get her into remission.  She did cycle 1 and that went ok, our environment was in hospital in a private room and in complete isolation. Bangkok is a big old dirty city and so anyone who visited had to gown up, wear face masks. Food was very limited due to the fact that its hot and anything imported could have been sat on a dock for hours defrosting/thawing.  Same for fruit – the chemicals they use in Thailand for farming are pretty harsh, so this was also off the menu.   NG tubes didnt exist and despite me asking for one it was refused as they won’t do them in Thailand – so basically Lily was on the road to almost starvation.  This was due to a limited diet and of course the treatment she had over time, made her extremely poorly with infection after infection.

After her first round we made it home for Xmas day – a few days too early for discharge but the Dr allowed her to come home.  They knew I could try and feed her easier too than hospital food.

Then just after NY we went back in for the next round of isolation in our room and for Lily to have yet another picc line inserted.  They wouldn’t allow her to come home with a picc line in and had to have a new one in and out each time.

Lilys experience for going into theatre was always an anxious one, she would have panic attacks just before and one time we had to cancel surgery as she couldn’t go through with it. I used to battle with the nurses and staff down in theatre as argued that they had to allow me into the room with her whilst they put her to sleep.  It was pretty scary for a child and lots of people around her speaking thai and a very different experience to what she has here.  They would use anaesthetic the same as what they give adults. Lilys Dr would always support me and I made sure I was always with Lily when she went to sleep and woke up – even sitting outside the theatre room once as didnt trust that they would come to get me in time and this would freak Lily out.

Then January 2016 came the news that no mother/woman wants to hear.   I was diagnosed with breast cancer – same hospital different floor and of course different Dr.  Had emergency surgery to remove what was needed and Lily and I were in the same hospital on a different floor at one stage.  Lily had become extremely poorly on her 2nd dose of chemo – serious infections and was touch and go for a while.  All I wanted was to be with her and Dr Piti wanted the same.
So we worked it out that I could be. I had endured 18 hours of surgery which we know now was a disaster and well, lets just say my faith in the Thai medical system failed. But thats another story – the most important thing was Lilys care and treatment we were happy with.

We were desperate to come back to the UK but neither of us were fit to fly at the same time together. I couldn’t and wasnt going to leave her, so in March 2016 we  both had the green light to fly.  Within 5 days we were on a plane and heading back, back to what we didnt know.  We had problems with the NHS accepting us as we had lived overseas for so long and they wanted proof we weren’t returning to Thailand otherwise we would have had to pay the money back + 50%. At that point I had 5 days where I had to get us back before it was too late, so luckily my insurance company covered us for 90 days in the UK.  I hadn’t got a clue at that stage whether we wouldn’t go back to Thailand – this was our home and where we loved to live.

The only private paediatric oncology unit in the UK was GOSH – so this is where Lily went for her last and final 4th round of chemo/treatment. I then went to Royal Marsden for my treatment and began my chemotherapy.  Thank god I did, dr’s told me I was lucky as was full of ecoli and my mastectomy was a disaster.   But the main thing was Lily was in good hands and we had family with us to help support.

Lily was keen to get into school and so we moved to the Midlands where my family lived for their support and decided we couldn’t as yet return to Thailand if ever in all honesty.  She started school, loved it and was in remission as the chemo had done the job.

Then in July 2017 I was offered a great job and in Manchester – the city I had lived for many years and where we called home before Thailand.  Lily just started Y7 in secondary school and life was good, then we had to go to RMCH for check up and to meet the team she had been transferred to from Bham Childrens.  Thats when they discovered the AML had returned – Lily was devastated, totally totally devastated. She knew what was coming and had just got her life back to some sort of normality for a girl of her age. Hair was getting longer and she had made friends, started playing for a local football team and was getting on with life.

January 2018 she had a BMT as we found 100% match – so now she is 6 months post transplant and doing well, we are back in the Midlands as needed the support again of family and I realise now that life can never really be normal. Whatever normal is I guess 🙂

We will stay under the care of RMCH as this is what Lily wants and the team.