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

Becky shares little George’s story;

“On the 30th March 2014 (Mother’s Day) George was born,  he was absolutely perfect, beautiful but spotty.   The midwife wasn’t sure of the spots so we waited for the doctor,  the doctor came and was convinced it was baby rash so off home we went.   The next day a midwife came out and sent us to the doctor then to children’s A&E thinking it could possibly be chicken pox.  We were sent home again being told it was baby rash.
Over the next few weeks midwives and health visitors would tell us different things it could be, with one even comparing it scabies.
But George was healthy and we were happy.    Over the next few months his skin got worse,   we were told it was eczema.
He had the worst nappy rash and would scream when we changed him and his thick cradle cap.  We could clear it all away at night and by the morning it would be back.    We were given a range of different creams to try.
August 2014 the ear infections started to,  we were given drops, antibiotics and nothing seemed to work.   We got to the point the doctor was making us an appointment every 2 weeks because he wasn’t sure the things he would give us would work either.  He said the infection looked like one found in adults and was rare in children, so was very puzzled by George.
He referred us to a specialist Ear Nose and Throat consultant and we were waiting when the lump appeared behind his right ear.  So, off we went back to the doctors.   At this point George had started to be sick after some of his meals.  Again we thought nothing of it, he was weaning at the time and we assumed it was a change in food.   The doctor sent us to a&e where we saw an ENT specialist at last.   This doctor asked us to come back the next day to see his colleague.   When we did they weren’t convinced it was his mastoid and seemed to think it was a swelling of his skin because the skin behind his ear was so sore.   They sent us off with the promise of another check up in a few weeks.
It was in the next few weeks we noticed a change in George at 7 months he had been cruising the furniture and we were convinced he was going to walk,  this had stopped and he would just sit and watch.  He was starting to be sick after every meal and every milk feed,  he was having his weight checked weekly because he had dropped from the 75th centile to the 25th.   This is when we noticed the lump was bigger.   The local doctor sent us back up to a&e and George lay on the bed watching but never moved.   He never moved as they as the took bloods,  cried but it seemed like he didn’t have the energy move.   I begged the nurse not to send us home again and she promised I wouldn’t leave till we had answers.
My mum, Dad and partner took it in turns sitting with us while the other had our older child.
That night theY admitted us, it was the 29th November and George was 8 months old.
The did a CT scan in the middle of the night and the next morning the doctor told us this lump had made a hole in his skull and was pressing on his brain.   We were sent to Birmingham children’s hospital so they could run more tests and perform a biopsy.
The surgeon who performed the biopsy was lovely and came to see George before he went home.  He was explaining how the operation had gone and told us he thought it was cancer.   My world stopped and to be honest the whole time around that is still a blur.   I can remember my Mum telling me it was OK, and me panicking cos Dan was back in Stoke with Harry and that I needed to tell him.   Luckily I had a good support network at home and three of them happened to be there with me that day and they took control of telling Dan the devastating news.    I remember the next day I spent the day crying as I needed to get it out before my older son who was only 2yrs old at the time was coming and I needed be fine for him.   We had been in Birmingham for 4 days and it was the first time I was going see him.
While he was there Georges doctor came up see us and told it wasn’t cancer it was LCH.   I remember feeling relived but we were told he still need wigglys in and still needed chemo and we were moving to the oncology ward.
However as the time went on we failed to see how George was any different to the other children there.
George started his chemo and steroids and responded really well.  The lump reduced by half nearly straight away and the doctors were happy.  After 2 weeks at Birmingham we were sent home to have shared care with Stoke hospital.
George’s first chemo did not go as expected, he was starting with a temperature and they kept us there to see if it spiked.   I remember another oncology mum telling us to strip his clothes and open a  window to try and cool him down, but it didn’t work and we were admitted again.   I was devastated again, I had only had 1 day with Harry and now I was going away again.   George was still being breastfed so there was no other option than for me to stay with him.
This pattern continued on; George would have chemo, spike a temp and be admitted.   Then in January just after George had finished his initial 6 weeks treatment the lump returned.
After weeks of tests it was confirmed he had relapsed and a plan was put together to start a different, stronger Chemo. It took two months to confirm the relapse and figure the treatment as the doctors at Stoke had never seen an LCH relapse during treatment before. The strong treatment worked and we are now 2 years disease free. George has lost his hearing in his right ear where the LCH was as it ate away at all the bones in his ear. But he is happy, healthy and the strongest boy I know.”
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Day 26, Childhood Cancer & Histio Awareness Month. Ava’s story; Langerhans Cell Histiocytosis.

When I first heard the words ‘Langerhans Cell Histiocytosis’ I sent myself in to a craze researching and reading anything I could find online.  At first I came across a lot of medical journals which I didn’t have the capacity to digest. Then I typed in ‘Langerhans Cell Histiocytosis, manchester, England’ and little Ava’s face popped up. I instantly took to facebook, typed her mum’s name in and sent a message.  Kirsty replied straight away, I told her we were currently in RMCH and that we thought Jack had LCH.  She promised to answer any questions I had and became a sounding board over the coming weeks.  i’ll be forever grateful for that.

Here she shares gorgeous Ava’s story;

“This is my Beautiful princess Ava Mae from Miles Platting, Manchester. She was just 5 months old when she was diagnosed with LCH (Langerhans cell histiocytosis) with risk organ involvement of the liver and spleen on the 26th Nov 2012. Leading up to her diagnosis symptoms were unusual abdominal rash, persistent ear infection, several lumps on her head, screaming fits, cold sweats and a large liver and spleen.

We spent weeks going backwards and forwards to the GP; it was only until the second lump appeared that she was referred to the paediatrician who then diagnosed Ava after many tests. Unfortunately, 2 blocks of chemotherapy didn’t work and Ava had a Bone Marrow transplant on the 2nd May 2013 from an unrelated donor. Before her transplant Ava had over 100 blood and platelet transfusions (before the age of 1!) Ava was doing really well and was over 2 years post transplant when she started suffering with horrible head aches and had some speech problems as well as sickness. I took her to the hospital in January 2016 but they just monitored her overnight and sent us home. Things got worse so I went back to the oncology ward ‘day case unit’ and pleaded with our Consultant to scan her. 

Luckily he did and they found a large tumour at the back of Ava’s brain blocking fluid and causing lots of pressure. We stayed at the hospital for some time and they de-bulked the tumour. We were allowed home for a week or so and Ava started to deteriorate again so I took her back and scans confirmed too much pressure again so they decided to perform emergency surgery to remove the rest of the Tumour. We were on the HDU unit for about 2 weeks then ward 78 for 2 weeks before we were able to come home. Ava’s recovered really well and started big school that September, it’s been a crazy time but we’re over the worst now. Since finishing treatment she has been diagnosed with Diabetes Insipidus and Growth Hormone Deficiency which are related to the disease.  Despite all this she is doing amazing and we love her so much. Ward 84 and the bone marrow unit at Royal Manchester Children’s Hospital will always remain close to our hearts.”

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.