Patient Experiences
Be Child Cancer Aware’s mission is to continue to raise awareness of the signs and symptoms of cancer in children and teenagers. Some of our parents and young people have kindly told us the signs they/their children had before diagnosis to help us to raise more awareness. Thank you to everyone who submitted their comments for this page:-
Daniel Rowlandson ~ Signs and Symptoms of Leukaemia
Our son max developed a limp on his left leg, we initially thought it he had out grown his shoes. However he continued to limp, we left it a few days and then went to the GP’s. ‘growing pains’ we were told. After a week we became concerned as he continued to limp but also became unsettled at night and was sweating a lot on his head / pillow. My wife called NHS Direct , England had just kicked off in their opening game of the 2010 World cup finals. NHS direct said we were to go straight to A&E as it could be septic arthritis of the hip. After seeing countless doctors, various blood tests, examinations and scans we were sent home the next day. We had just got in the door when the hospital called to say come back as the blood test had picked something up. 36 anxious hours later the devastating news was broken to us that our 2 1/2yr old boy (max) had ALL.
The first signs I had was being breathless and sweating loads then I found the lump on my neck, was diagnosed at 13 with hodgkins stage 3b took 6 months to get diagnosed. I’m now 22 and have a little girl at almost 2, xx
Claire Dove ~ Signs and symptoms of Acute Lymphoblastic Leukaemia.
My daughter was diagnosed with ALL in 2009. Main symptoms were swelling to the abdomen and loss of appetite due to enlarged liver and spleen, tiredness, severe pains in the hip/thigh that woke her in the night accompanied with a high temp.
Gaby by Mom Vicki ~ Signs and Symptoms of Carcinoma of the Thyroid
Gaby had a swollen gland in her neck, thats all!! She was 6. How many children get that with viral infections? And for 15 months that is what we were told she had despite no viruses being identified! The lump came up, went down, came up bigger, went down again. Eventually I asked for it to be removed and was told it wasnt necessary! So i asked for a second opinion, the lump came out , and the rest is history!!
Vicki
Jodie Rowlandson ~ Signs and symptoms of Leukaemia
My son (who was 2 at the time) started limping, was diagnosed as growing pains, the irritable hip syndrome and finally after a bone marrow aspirate confirmed to be Leukemia (ALL). He is now 4 and in Maintenance treatment. xx
Karen Ellam ~ Signs and symptoms of Medullablastoma, brain and spinal tumour.
My son was diagnosed aged 8 with Medullablastoma (brain and spine) the main symptoms were headaches vommiting but once he had vommited the pressure in his brain had released so he felt okay again for a while …double vision…it took us 4 months to get diagnosed. From being diagnosed to passing away it was 18mths 
xxxx
Nicola Ensor ~ Signs and symptoms of Leukaemia
Chloe was 6 when she was diagnosed with philidelphia positive acute lymphoblastic leukemia she used 2 sweat a lot at nite + was always tired, and started 2 get a lot of funny lookin bruises, x x
Lorraine Michael ~ Signs and Symptoms of Wilms Tumour (Kidney Cancer)
Hi my daughter Charlotte (aged 3)was diagnosed with Wilms tumour (rare kidney cancer) in 2006 she is now in remission thankfully! Her symptoms were distended tummy! Loss of appetite, she became lethargic & withdrawn at nursery! Our world fell apart once she was diagnosed but thanks to our local hospital St Peters in Chertsey & the Royal Marsden in Sutton she is now a healthy/happy 9 year old! Hope this helps!
Margaret Sheridan ~ Signs and symptoms of Acute Myeloid Leukaemia
Liam, my gorgeous nephew, Acute Myeloid Leukaemia, sore throat, ear infection, severe rash, swollen eyes, sore joints, tiredness and breathlessness, loss of appetite and general condition……………left this world aged 6 2009. The bravest little boy ever.XXXXXXX
Heather Dowdeswell ~ Signs and symptoms of Ependymoma, brain tumour.
Grade III Ependymoma (Brain Tumour). Diagnosed in 2009, 10 days after my son’s 5th birthday. Symptoms were extreme/constant tiredness, change in personality (clingy, grumpy), weight loss, random vomiting for no apparent reason but completely fine afterwards. My son also developed a squint smile and would have episodes of shaking. He had months of high temperatures also for no apparent reason. Strangely, only ever complained of one headache! We spent 3 months going back and forth to our GP and were given many reasons for these symptoms. When it was finally diagnosed the tumour was 9.5cm.
Fiona Harris ~ Signs and symptoms of Acute Myeloid Leukaemia
At 4 weeks old my son had strange purple lesions, tired, crying, being sick, clingy, high temperatures and struggled to put weight on. He was eventually diagnosed 7 months later with AML by a simple blood test at Worcester Royal! 7 different doctors from our local surgery and primary care unit failed to pick up on his swollen spleen and didn’t think that his purple lesions were anything to worry about
Claire Parslow ~ Signs and symptoms of Acute Lymphoblastic Leukaemia
My little girl developed a limp, we were sent away so many times we were told it was internal brusing or irritable hip causing her to limp and hardly able to get out of bed in the morning and barely having any energy!! I over heard a doctor at hospital when we eventually got there say that it was “attention seeking because she had a new baby sister” I was so fuming when I heard this!! She was diagnosed with accute lymphoblastic leukaemia on 20th may 2010. Keep up the great work of raising awareness. xx
Tracy Padgett ~ Signs and symptoms of Acute Lymphoblastic Leukaemia
My son has ALL diagnosed when he was 9 years old. We saw 2 GP’s and were turned away from A/E before a 3rd Gp took notice and referred us to our local hospital. My Son had backache and leg pains. He had facial swelling around his eyes which was very marked and obvious in the morning but did go down during the day. This was happening over 2/3 weeks. His urine was cloudy at each visit but never grew any bugs. (We were later told that this was dead cells being shed due to the leukemia). He was also very pale and underweight for his age. A parent’s ‘gut feeling’ should never be underestimated. I knew there was something out of the ordinary wrong with him. Obviously I never thought of cancer.
Claire Everett Nee Harwood – Signs and symptoms of Hepatoblastoma
Hi, my son was diagnosed with hepatoblastoma (very rare liver cancer) when he was 6 months old. He had no obvious symptoms and seemed a very healthy happy baby, although his appetite wasn’t great and I was struggling with weaning. One day when I was changing his nappy, I could see a shape under his skin below his rib cage, it was a hard lump. It hadn’t been there before. It turned out to be a 10cm tumour coming off his liver. It was squashing all his insides, including his stomach. Thankfully, we had a very switched on GP and he sent us to hospital after our appointment. My son has made a full recovery and is 4 years into remission. X
Andrea Perry – Signs and symptoms of Extensive Infiltrative Oligodendroglioma
My daughter was diagnosed with extensive infiltrative oligodendroglioma grade II aged 9 years old in October 2011. Her presenting symptoms were headaches, nausea and vomiting, excessive thirst and sleeping a lot. She had the headaches about once a month with vomiting which lasted a couple of days. This lasted for about 6 months with numerous visits to the GP’s where a diagnosis of acid reflux was made and a trip to the opticians to get her eyes checked where we were tols she had perfect vision. She finally got diagnosed following a trip to A and E after vomiting daily for a couple of weeks and a couple of days of her right eye deviating to the right when she was trying to focus.
Caroline Bergin
My son was diagnosed the 19th of August 2010- the Friday of his very 1st week at school. I had been back and forward to the doctors for a year. Firstly it was sore heads, and tummy aches- I was told he was fretting as I had began university full time! Then he suffered from reoccurring temperatures, and severe itching that would wake him. Again without examining him – kids catch things and he is itchy due to sweating when he has a temp! I bought him vitamins and he was ok til after Xmas until he had blood in his stools, took him to A&E to be told they couldn’t see any in his sample so we were sent home. During the summer holidays he had turned yellow and pasty in colour ( this to me was the one that I knew just wasnt right) and was struggling to walk any distance. Throughout this whole period his bruising became excessive and in uncommon places! His first day at school he woke with a small nose bleed, he had a lump at the glands on the back of his head, and a pounding heartbeat from the slightest exertion. Nobody else could see what I was seeing, not even his dad! He had the doctors the following Tuesday, however on the Friday I rang the docs and said he had to be seen that day- call it mothers instinct! Even in the waiting room I was doubting myself as he played happily with a toy! The doctor referred us immediately to the local hospital where he was diagnosed within hours, and with a platelets level of 6 was given a transfusion immediately! The stand in doctor who saw us that day had worked in the kids cancer ward the previous year- fate or what! Especially as the early hours of the Sunday morning he had bone pain in his legs and had to be put on morphine syringe driver! God only knows what I would have done if he had been at home with not a mark or any swelling but screaming in such pain! I just hope if any one reads this they take from it perseverance and never doubt your own instinct!
Samantha Johnstone
My son Oliver age 5 was diagnosed with rhabdomyosarcoma in July, it was a huge shock, the only symptoms he had was tummy pains on and off for a few weeks, never in my worst nightmares did I think it wud be something so serious. So far he has had 3 cycles of chemo and is due his 4th next week, he is having an MRI in the next couple of weeks so hopefully it will show the treatment is working x
Tasha Jawk
My daughter Madilynn was diagnosed at 6 months with ALL ( acute lymphocytic leukemia). being a young mother and having to face such a terrible nightmare definitely tested me. Maddie went through her intro chemo, which was very rigorous and hard on her little body. She finally got into maintenance therapy and has one more weekly appt then they are going to see her in a month. If her counts are up, they will then schedule surgery for her port to be removed. I saved her little brothers chord blood and tissue just in case it was needed. Two blessings I recieved between Maddie finishing her two years of treatment and staying in remission and banking my sons chord for her. I stay weary of the long term affects the chemo could have on her but stay hopeful. She is now 2 and 1/2. My living miracle she is!
Chalan Field
My son Louis was 9 when he was diagnosed with Acute Myeloid Leukaemia. His symptoms were night sweats (which didn’t give us too much concern but I now know were the first signs) loss of appetite, leading to weight loss and breathlessness. He was also very pale in colour. The symptoms only began about 3 weeks before he was diagnosed and initially the doctors thought he just had a chest infection. I had a feeling that something was “not right” and took him to a different doctor who sent us to A&E for blood tests. Louis completed four blocks of chemo and almost 6 months in isolation in hospital and has now thankfully made a full recovery, we are so proud of him.I wish I had known more about childhood cancer symptoms at the time as they are so often thought to be more minor ailments and valuable time can be lost.
Ellen Beale
My daughter had a small lump under her right ear- Atypical mumps said the GP. The only other symptom was thrashing around and moaning with pain during her sleep. Three visits to A and E (during which time the lump had grown considerably) followed by a trip to GOSH and she was diagnosed with Rhabdomyosarcoma. This was 20 years ago and she is now studying for a masters degree in Psychology with a view to working with children in Oncology departments.
Lisl Haldenwang
My son Otto was diagnosed with medullablastoma when he was 4. He suffered headaches, lethargy, agitation, restless sleeping while complaining of pain in his knees. GP said it was a virus. After another month he started vomiting as well and squint and double vision. GP said he was a mystery. I took him to several GPs but mother’s instinct finally convinced me to take him to AE. They rushed him into CTscan and saw swelling and lump in his brain. He had 5 cycles of extremely toxic chemo and suffered severe pain throughout. The cancer was almost gone after 6 mths but unfortunately came back with a vengeance. It was too late for radio and chemo had all but destroyed him. We were very blessed to have him at home with us for the last 2 months. I believe he knew he was dying but was completely at peace and happy with the knowledge that the angels would look after him.
