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!
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.
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.
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.”
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.
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.
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.
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.