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Childhood Acute Lymphoblastic Leukaemia Stories 

In the delicate world of childhood, where innocence and wonder intertwine, the emergence of serious illness casts a shadow, challenging the very essence of youth. Among these daunting health battles, childhood leukaemia stands as a poignant and formidable adversary, disrupting the carefree existence of little ones and altering the lives of families forever.

Leukaemia, a type of cancer that affects the blood and bone marrow, presents unique challenges when it strikes the young. Children, with their resilience and remarkable spirit, confront this illness with an unwavering determination that often leaves a profound impact on those around them. Their stories, woven with bravery and hope, not only shed light on the trials they face but also exemplify the extraordinary strength that resides in the smallest among us.

In this article, we embark on a heartfelt exploration into the personal journeys of children battling leukaemia. These stories, shared by the young warriors themselves or narrated by their family members, illuminate the unique struggles, triumphs, and touching moments of resilience experienced in the face of this disease. By delving into these tales, we hope to provide insight, support, and inspiration to those navigating a similar path, while also fostering awareness and understanding in the broader community.

Join us in celebrating the courage, tenacity, and unwavering spirit of these remarkable young souls. Through their stories, we honour their strength and resilience, aiming to create a platform of compassion and knowledge for families, caregivers, and anyone touched by the indomitable spirit of children facing the challenge of leukaemia.

What is leukaemia?

Leukaemia is a type of blood cancer. There are 5 main types of leukaemia and several different subtypes, the treatment offered depends on the type and subtype.

Acute Lymphoblastic Leukaemia – ALL

This is what the Dinosaur has, it starts from young white blood cells called lymphocytes in the bone marrow. ALL usually develops quickly over days or weeks. It is the most common type of leukaemia to affect children but can also affect adults. 

The word acute means that the leukaemia can develop quickly. This is because the lymphocytes are growing and dividing much quicker than usual. These abnormal cells build up in the bone marrow and spill out into the blood. 

 The leukaemia cells can spread into other parts of the body, including the following:

  • lymph nodes 
  • liver
  • spleen 
  • central nervous system (brain and spinal cord)
  • testicles

The leukaemia cells can build up in the lymph nodes, liver and spleen and sometimes make them bigger. If left untreated acute leukaemia would cause death within a few weeks or months. ALL is the most common childhood cancer. It is usually diagnosed with a complete blood count and then confirmed with a bone marrow biopsy.

Acute Myeloid Leukemia – AML

AML starts from young white blood cells called granulocytes or monocytes in the bone marrow. The bone marrow produces white blood cells called granulocytes or monocytes too quickly because they grow and divide too fast. These abnormal cells build up in the bone marrow and spill out into the blood. The leukaemic cells can eventually spread to other parts of the body including the lymph nodes and the spleen. If it wasn’t treated the leukaemia would cause death within a few weeks or months.

Chronic Lymphocytic Leukemia – CLL

CLL affects the white blood cells called lymphocytes. It tends to develop very slowly. It is more common in older people and is rare in people younger than 40. 

In most types of leukaemia, abnormal white blood cells are made in the bone marrow. These cells can get into the bloodstream and circulate around the body. They do not develop properly and so do not work normally. For example, they affect your immune system as they don’t give you the protection from infection that they should. There are too many of these abnormal white blood cells. They might stop the bone marrow from producing enough healthy blood cells. They can also build up in the lymph nodes and spleen and cause swelling. In chronic leukaemia, the white blood cells are almost fully developed but are not completely normal. They still work, but not as well as they should do at fighting infection. Your body makes too many of these abnormal white blood cells. 

Chronic Myeloid Leukaemia – CML

CML starts in the white blood cells called granulocytes. It often develops slowly and treatment can keep it under control for many years. In CML, the abnormal leukaemia cells develop from early blood cells called myeloid blood stem cells. They become myelocytes. These cells are sometimes called granulocytes. So you may hear this type of leukaemia called chronic granulocytic leukaemia or CGL.

Hairy Cell Leukaemia – HCL

Hairy cell leukaemia (HCL) is a rare type of chronic leukaemia. It develops slowly from white blood cells called B lymphocytes. The cells have hair-like outgrowths on their surfaces which is where the name hairy cell comes from. Hairy cell leukaemia usually develops slowly. It can be kept under control for many years with treatment. 

The following accounts are all personal stories of real children from across the UK who are currently or who have been treated for Acute Lymphoblastic leukaemia. Names have been changed to respect their privacy. I want to thank their parents for agreeing to share these stories.

Theo’s Story

Theo is 3-years-old and is still receiving treatment.

From November 2021 to February 2022, Theo had a number of infections and his appetite began to decline. At first, I put it down to him being unwell and not really wanting to eat. In February 2022 Theo had another infection which I took him to the doctor for and I explained to the doctor I was really concerned with the amount of infections he kept having and wanted a blood test. The doctor said he didn’t want to put such a young child through a blood test and that it was totally normal for children to need antibiotics and have so many illnesses, but he agreed that if Theo had another infection within 14 days of finishing these antibiotics then he would book a blood test…. 13 days later Theo became ill again. I was honestly relieved he was ill again as it meant a blood test. 

The blood test appointment came through for May 11th. It felt like forever but I was so happy we’d get some answers. Roll on the next few months, Theo was still getting infections and at every appointment, we were given more antibiotics. With each infection Theo kept getting a rash, I googled symptoms constantly, and every time it came up with leukaemia. I was so scared but I felt crazy to even think it. I told my husband, mum and sister-in-law and they said I was overthinking. I began to believe I was crazy. I was in and out of the doctor’s surgery weekly, sometimes daily over the following months. Roll on the weekend before diagnosis, it was Theo’s 2nd birthday party with his friend. We had a bouncy castle, ball pits… everything a toddler could dream of. Theo spent the whole day crying and sleeping. I even got annoyed as I just wanted my happy toddler to enjoy his day. The party ended and we went home. Theo carried on sleeping and never opened a present. The next day he opened his presents and that night he was sick. He fell asleep and I rang 111. The doctor on the phone looked at all the notes. He said Theo needed to be seen urgently. It was 11 pm and he said to leave him to sleep but 1st thing call your doctor and tell him you are driving him to hospital and for him to call ahead and request an urgent blood test. That morning, May 10th the day before we were due the blood test, we walked on the ward and Theo was just pale and lying in the pushchair with no energy. The faces of the hospital staff stuck in my mind, they knew. They knew I knew. Blood tests and scans were done and they asked me when my husband would arrive. He’d just parked up and they told me a consultant was on his way in. That was enough for me to know. I can still hear those words “Theo has leukaemia” To be honest I don’t remember many words after that. How did I feel…. Relief to have an answer, scared as it was the unknown. I’d looked at Theo during times and knew if I didn’t do anything he’d die. No parent should feel or think this. So far Theo is doing remarkably well. He’s taken each moment with a cheeky smile and his blue sparkling eyes. He’s my hero and proud to call him my son.

Layla’s Story

Layla is 3 years old and is still in treatment.

Layla suddenly began having fevers which we put down to her older brother bringing home germs from nursery. She was 16 months old, her brother was almost 4. She had some night sweats and was just always hot. She was very clingy with some slight random bruises. 

We attended the GP and disagreed with the diagnosis. We also attended the pharmacy for her ears to be checked (the pharmacy wouldn’t do this). I then took her to urgent care early one weekend morning when her fever was 40c. Initially, they dismissed it as a viral infection but I broke down to the triage Dr and said her brother wasn’t unwell, no one in the house was unwell. They agreed to run blood tests and I was told she was anaemic and they wanted to run more tests, including an x-ray but they didn’t tell us why. They had already sent blood samples to Great Ormond Street Children’s Hospital with suspected leukaemia and after admitting us to the children’s ward with no explanation, they finally told us that evening. She was given a blood transfusion due to low red blood cells and we were transferred straight to Great Ormond Street to begin treatment.

Amelia’s Story

Amelia is 10 years old and has finished treatment.

Amelia was diagnosed on 10.12.2013 but had been ill and visiting doctors since the end of October 2013. We were repeatedly told it was viral, especially the persistent cough she had. We were told it could take up to 8 weeks to clear. She grew increasingly lethargic and pale. On a visit to A and E, she was admitted but the doctor wanted to discharge her again with no further action, fortunately, the nurse in charge agreed with me that something wasn’t right and ordered a second opinion. This led to blood tests and a lumbar puncture which resulted in diagnosis 3 days later. 

She endured 2.5 years of chemotherapy and procedures taking drugs that have been unchanged since the 70s!  She is cancer-free now but both she and I have trauma as well as health anxiety and she is suffering long-term effects from the cancer treatment. She has continuing issues with leg pain, especially in her knees and ankles as a result of one of the drugs. We are told she is almost 60% more likely to have another cancer diagnosis later in life. 

Flo’s Story

Flo is 5-years-old and has finished treatment.

A skin-coloured lump appeared on our daughter’s head in March 2020 that had no obvious cause. Over the next few months, it grew rapidly into a large purple lump. She also had swollen lymph nodes so I took her to the GP multiple times and had countless phone calls with them. The GP eventually told me to ‘stop bringing her back in, she’s fine’ but luckily I ignored them and demanded they refer her to the local hospital’s paediatric team which they eventually agreed to do. The local hospital saw her several times but said the same as the GP.  So I ignored them and took her to a different, larger, children’s hospital where she was diagnosed the same night. 

This started in early March 2020 and despite taking her to the GP and hospital several times she wasn’t diagnosed until the end of May 2020. The hospital she was diagnosed in was (and still is) amazing but sadly was a 1hr drive from home. My now husband doesn’t drive and due to COVID restrictions at the time only I was allowed in the hospital with her. So when the Dr came to diagnose her he asked that I call my partner/daughter’s Dad and put him on loudspeaker. He then told us the diagnosis and explained her Dad could come in for 1 night. My husband doesn’t drive but luckily a family member drove him to us, that 1hr it took them to get to us felt like a lifetime of torture while I stared at our sleeping child, crying my heart out, praying to a God I don’t believe in not to take her and begging her Dad to hurry up over the phone (I had barely any signal) even though I knew he couldn’t teleport to us but I had no one there with me other than my sick, sleeping child. Diagnosis and treatment were really traumatic for all of us but it’d take me hours to explain our girl’s whole story.

Edith’s Story

Edith is 2 years old and is still receiving treatment.

We’d noticed Edith’s bruising for a couple of months and put it down to normal toddler tumbles. The bruises started becoming excessive for the bumps she was having. We spoke with the GP who booked her in for a blood test but it was a 5-week wait.  5 days later Edith looked very washed out and was lethargic. We decided to take her to our local A&E who were absolutely amazing and were really on the ball. They shared our concerns regarding Edith’s symptoms and the leukaemia red flags. We were given a basic diagnosis and referred to our main treatment centre within a few hours of arriving.  Since then between Edith’s main treatment centre and the shared care centre she has managed to go through the treatment with minimal complications.  

Eli’s Story

Eli is 4-years-old and still in treatment. 

My Son Eli first fell unwell on the 7th of January 2023, it then took 10 weeks of what I can only describe as hell before he was diagnosed with ALL on the 18th of March. He had a pattern of recurring temperatures lasting 5-6 days, he then would have a break of up to 10 days however as time went on this break shortened to just 3 days. Along with these fevers, Eli would complain his legs, head and stomach were hurting. There were times that he would sit and scream in pain refusing any form of physical contact from us as this just caused him more pain. Each time I took Eli to the GP or A&E no cause for the fevers or pain could be found and we were just fobbed off each time and told he had a virus. In desperation, we paid privately to see a paediatrician in an attempt to be listened to. However again our concerns weren’t heard and we were even told “he definitely doesn’t have cancer or anything like that”, the diagnosis came just 7 days later after I was finally listened to by an amazing consultant in A&E.  As his mum I knew there was something seriously wrong but I wasn’t listened to. I was made to feel like just an anxious mum. There were nights I would lay in bed worrying that they thought I had Munchausen. In the end, I stopped taking Eli myself and made my husband or mum go. I stopped seeking medical help for my younger child when needed due to the fear of being made to feel like I was making it all up. 7 months later I still struggle with this. The medical neglect and gaslighting we went through were horrific. Upon diagnosis, I was so angry and still am now. 

Elsie-May’s Story

Elsie-May is 5 years old and is still receiving treatment.

After 9 months of GP appointments, out-of-hours and A&E visits she was admitted to our local hospital where blood results showed critically low haemoglobin so she was blue-lighted to the main children’s hospital in Glasgow where she received an emergency blood transfusion. After a few weeks and lots of tests, a bone marrow aspiration was done it was confirmed that she had ALL she began treatment straight away. She had surgery to place a portacath to be able to administer her chemotherapy. She is still in treatment but has reached the maintenance phase of treatment.

Seth’s Story

Seth is 7-years-old and is still in treatment.

Seth was a happy healthy child before diagnosis, or so we thought, you would never have known he was so poorly. We started noticing him looking very pale, and often yellow at times. The family then started noticing, but because he is fair with blonde hair we just assumed it was his normal colouring. One day I noticed he was particularly yellow on his feet and I ended up taking photos and contacting the GP. We were offered a Zoom call appointment but I felt they couldn’t see the colouring properly over the phone. Not much was done barring being told to keep an eye on it developing further. A couple of weeks later he developed a hive-looking rash all up his legs and feet. He was taken to A&E where they said allergic reaction to something and he was given Piriton and sent on his way. 

Within days after this clearing up he started becoming unsettled at night. He would cry and roll around with pain in his legs. As the nights went on we noticed the episodes lasting longer and he was sweating and spiking a temperature. I then realised I had been giving him Calpol every night for 8 evenings and contacted the GP immediately. I wasn’t happy with the Zoom call we had so I sent a very concerned email and luckily a doctor rang me back and said he wanted further investigations and we were sent to our local children’s ward. Whilst there he was thoroughly assessed and had a blood test.  

Several hours passed by and then I saw 3 doctors coming towards me with a slip of paper. They took me into a side room, whilst Seth stayed with a nurse, I was completely on my own due to COVID restrictions. I was told there was something concerning with his blood results. They couldn’t confirm what it was without further testing but there is indication he could have cancer. We were then transferred straight to Sheffield Children’s Hospital. They wouldn’t allow me to go home as they said his blood levels weren’t safe to be left any longer. We were transferred via ambulance. He had a blood transfusion as soon as we arrived and a bone marrow aspiration and lumber puncture the following day which confirmed b cell acute lymphoblastic leukaemia with 100% leukaemic blasts in his bone marrow. Luckily his CSF (cerebral spinal fluid) was clear. 

4 days after arriving he was started on a 3 year chemotherapy plan. Unfortunately, Seth didn’t respond well to treatment at all and was moved to regimen C at high risk. He was still MRD positive at the end of induction, and also at the end of consolidation. We were told he may need a stem cell transplant so we had to have his little brother tested who was 2 years old at the time but he wasn’t a match. He was then referred to GOSH for a car T-cell therapy trial. Luckily he just made the criteria with an MRD of 0.09%. We relocated to Great Ormond Street and spent around 7 weeks there in total. The car-T cells were infused and he responded well with minimal side effects. He remained monitored for 1 month before having another bone marrow aspiration which finally confirmed, after 7 months of treatment, he was in remission with no cancerous cells detected. 

Everything was going well, he had no further treatment for the following 4 weeks, we headed back to GOSH for his 1-month checkup and unfortunately, we found that the car-T cells had started disappearing, meaning the treatment had failed. We were given various options, reinfuse another round of CAR-T cells, bone marrow transplant, return to the original chemotherapy path and continue with maintenance or do nothing and monitor closely. We didn’t have a match in the database for a transplant so we decided to go back to chemotherapy. We then headed back to our original hospital and continued with chemotherapy where we left off. Seth did delayed intensification which was really rough on him, then continued on to a 2-year maintenance plan which he has 8 months remaining of. 

Abigail’s Story

Abigail is 6-years-old and has just finished treatment this week.

Abigail was diagnosed with ALL in Sept 2021. The bone marrow biopsy was simply to rule Leukaemia out, and the consultant told us she would eat her hat if it was leukaemia. Treatment is a marathon, not a sprint. The doctors and nurses have shown the best care for my little girl. She loves going in and feels in control. We find it hard to plan things, as at the drop of a hat she may get a fever and then she has to be admitted to the oncology unit, and that is typically for at least 48 hours. End of treatment on the 2 November 2023, here we come!

Darragh’s Story

Darragh is 8 years old and is still in treatment.

My son had persistent pain in his side for 4 days before he was diagnosed in December 2021. He was on very intense high chemo as his leukaemia was aggressive. He went through intense treatment for 10 months which left him wheelchair-bound and critical in the ICU twice, he is in the maintenance stage now and will be in this stage until 2025. 

Rowan’s Story

Rowan is just 18 months old and is still in treatment.

On the 24th of May 2023, Rowan was diagnosed with Acute Lymphoblastic leukaemia after a trip to A&E with a non-blanching pin prick rash. She began treatment in the Schiehallion Ward that day, where the staff are truly angels. Her 9 weeks in the hospital included 7 trips to the theatre, upward of 30 blood/platelet transfusions and a week in PICU with severe sepsis, we are truly grateful to the doctors & nurses to whom we owe our daughter’s life. She is the strongest, bravest little girl and we are so thankful to the Royal Hospital for Children, where she will spend at least another 2 years as an outpatient for her chemo in the Schiehallion wards.

Kate’s Story

Kate is 3 and is still receiving treatment.

Kate just woke up one day and she couldn’t walk. I couldn’t get a doctor’s appointment for her so I took her to A&E, it took all day but once blood tests came about I was told she had leukaemia she was only two years old! Now in maintenance, the all-together trial (a new treatment plan that aims to reduce the impact that chemotherapy has on children) has been good for us no steroids or vincristine so there have been no side effects, just can’t wait to get the Hickman line out so she can have a proper bath!! 

Lily’s Story

Lily is 12 and has finished treatment.

We were worried that Lily was complaining about pains so went to A&E. Initially the diagnosis was low platelets, but 7 days later we went for a second blood test when leukaemia cells were detected. Within hours Lily was admitted to the children’s hospital in Cardiff and her treatment began. We saw the effects of chemotherapy treatment over the next two years, but Lily was like a little warrior as she went through all the treatment. There were a lot of tears, but some laughs too. Thankfully she has now rung the bell.

Freddie’s Story

Freddie is 5 and has just finished treatment.

Fred’s diagnosis was fast, we’re lucky in that respect. One day I picked him up from nursery and they said he wasn’t himself and were clearly very concerned. I carried him home and the next day he didn’t want to walk much. The following day he stopped walking altogether. We went to A&E after calling 101, initially, they thought it was something called “irritable hip” that you can get after a bad virus (he’s had one two weeks prior with a febrile convulsion). But another doctor noticed how pale he was and asked for blood work. It was clear from the results. They followed up with a bone marrow biopsy later. Compared to many, despite all the crap and side effect list and him having endured so much, I consider us lucky as we’ve never been in ICU or had any life-threatening side effects. However, Fred had many different infections and illnesses through treatment so we have yo-yo’d in and out of the hospital for the duration. Some parts you anticipate to be the worst (Delayed Intensification – one of the treatment phases) were okay for us, but other parts you hope will get easier (maintenance) were really hard going – and life couldn’t really “get back to normal”. Probably due to higher doses and steroids, being in a high-risk category. We finished treatment two months ago. And now we feel like we’re just waiting for signs of relapse. Mentally it doesn’t feel better. But he hasn’t been in the hospital much and has had fewer illnesses already. All we can do is hope for the best and try and live life to the fullest. 

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