Little Miss Niamhie B

Raising funds for research into anaplastic large cell lymphoma (ALCL)

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Níamh was six years old when in 2018 she was diagnosed with anaplastic large cell lymphoma (ALCL), a rare form of non- Hodgkin lymphoma (NHL). Here, her mum Orla shares her story...

Our beautiful little girl, Níamh, was always full of life and so active. Níamh was on a gymnastics squad, winning competitions and practising day and night. She was the fastest runner in her year, always winning at sports day, and was a very strong swimmer and a great Irish dancer. So, when she was diagnosed with non-Hodgkin lymphoma, we were all left in total disbelief.

How could this happen to our amazing, fit and healthy little girl? Níamhs nickname in her gymnastics club was tiny but mighty. That summed her up - not just physically but mentally, too.

One reason for our disbelief was that Níamhs symptoms were initially extremely mild. We first noticed a small lump on the back of her head. After several trips to the doctors, we were assured that it was nothing to worry about. But a couple of months later, we all went swimming. As soon as Níamh got in she had to get straight out. She was shaking uncontrollably and absolutely freezing. We thought this was strange.

Shortly after, her grandad noticed that she was limping, yet none of us had noticed this throughout her competitions. She had been doing so well, often winning, and in no clear or obvious discomfort. At visit to the GP told us it was something viral, but a few days later we returned as something felt wrong. Our GP listened to my concerns and decided to do a blood test. When everything came back normal, we were so relieved! But very soon we noticed Níamh couldn't lift her leg. She was having trouble walking, and needed to crawl up and down the stairs.

During numerous trips to A&E, my husband and I pushed for answers. We instinctively knew there was something wrong and made the decision to get a private MRI scan as we couldn't wait any longer. To any parents horror, this scan showed some abnormalities in Níamhs pelvic area. We then had to wait two weeks over Easter to see what they were, and to say this was an unbearable time would be a gross understatement.

A biopsy was then taken from Níamhs pelvis, which was followed by another long wait. Niamh was then diagnosed with not only but a rare form of it called anaplastic large cell lymphoma (ALCL). We were absolutely devastated!

When Níamhs chemotherapy started, in typical Niamh fashion, she flew through it and started to be herself again. She could walk, run and do gymnastics. She was so positive and hopeful, as were all of us.

As a six-year-old girl, with beautiful long dark hair down to the bottom of her back, it was very difficult for her to try and understand she was losing it. I attached long fake hair extensions to a number of cool bandanas, giving her back her confidence. She didn't look as sick as she actually was, and I think we and everyone around her forgot the severity of it all because she looked and felt so good at this stage.

After five rounds of chemotherapy, Níamh was back to gymnastics. But two weeks later - with just one round to go she ended up very sick and back in hospital. The cancer had spread to her lungs and she ended up in intensive care on a ventilator. Her chances of surviving were just 50/50, unless a drug called vinblastine worked. Thankfully, it did, and Níamh surprised everyone to be off the ventilator in just eight days.

The first thing she said to me was, "Mum, I can handle this". Typical Níamh - courage, feistiness and bravery in abundance. She was determined to stand up and go for a walk straight away. This was despite weighing just 16kg, having not eaten food for over four weeks.

After discussions with Níamhs consultant, a bone marrow transplant was our next treatment option. As we had been throughout, we felt hopeful, even though we knew that for a possible cure, the only option was to find a bone marrow match.

In the meantime, post-ventilation and ICU, Níamh was initially doing well. However, a few days later, in what felt like another blow to the stomach, we noticed her left eye was extremely red, becoming excruciatingly sore. On further, extremely invasive investigation, we learned the disease had spread to her left eye. After months of lumber punctures with chemo, twice a week, there were changes in Níamhs eye every two to three weeks. The suffering and torture she endured was horrific to watch, but she always made it easier as she never complained.

Thankfully our little boy, Darragh, was a donor match and we travelled from Northern Ireland to Bristol for Níamhs bone marrow transplant. Darragh was so brave and willing to do anything to help his big sister and did amazing.

There was still an issue with Níamhs eye but she was going to get radiotherapy as part of her transplant, to include her eye too. We felt so positive and hopeful after bone marrow treatment, but just 10 days after there were further complications with her eye. This required her to have chemotherapy injections directly into it. We were told that she had relapsed just 10 days after her transplant which we were also told was unheard of.

When we got home to Belfast, Níamh had put on over 14kg of fluid and if she wasn't in bed, she was in a wheelchair. Further tests revealed the disease was still in her lungs. Níamh ended up back in intensive care, this time on an oscillator and a nitric oxide machine as the ventilator wasn't even enough to help her lungs.

Our beautiful little girl passed away a week later on May 31, 2019 from respiratory failure in ICU, aged 7, just 14 months after her awful diagnosis.

We tried absolutely everything and Níamh fought with everything in her being, but this disease was the most aggressive that the medics had ever seen. ALCL is a rare childhood cancer diagnosis that, in Níamhs case, behaved extremely unpredictably, proving extremely difficult to treat. There was no other case to compare hers to.

We would like to acknowledge the amazing Dr Robert Johnston, Níamhs consultant. He truly left no stone unturned in his aim to get Níamh back to health. We take comfort knowing that our beautiful baby girl was in the best hands.

Unfortunately, we could write a book on what happened to our beautiful little girl in the last 14 months of her life because of this devastating and horrendous disease. During this time, I was also pregnant and before we returned home to Northern Ireland, I gave birth in Bristol to a beautiful little girl called Ría. Níamh was so excited to meet her baby sister, and was the first person to give Ría her first bath. They sadly had just three months together but one thing was clear for all to see. That, as the big sister, her love for Ría was unconditional.

We can't put into words of how proud we are of our beautiful little girl. There is nobody on earth who would inspire us and teach us the true meaning of life more than Níamh did.

We will not let cancer bring us down any more than it already has. That is why we have opened the Little Miss Níamhie B Fund to help with research into ALCL. We hope to uncover other treatments for this terrible disease to give other children a better chance of surviving, just as Níamh would have wanted. We cannot stress enough after our horrendous experience how crucial it is for specific childhood cancers to get funding for their research and clinical trials. Scientists and doctors cannot work without it. Absolutely every penny donated to the Little Miss Níamhie B Fund goes directly to research in paediatric Anaplastic Large Cell Lymphoma.

We were extremely private throughout, purposely to protect our little girl. We are lucky to have a great support system, and only want to surround ourselves with uplifting and positive people and ensure Níamhs lovable personality and feistiness lives on. Níamh wasnt one for pity and neither are we. We are privileged and more enriched for knowing and loving this amazing little girl, even though it was for a short time.

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Text CCLG 5 NIAMH to 70300 to donate £5. 

CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.

You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for  Little Miss Niamhie B so that your donation is allocated to the correct fund. 

100% of funds raised will go into research for anaplastic large cell lymphoma (ALCL).