Before Evie’s diagnosis, I had no knowledge of neuroblastoma or blood platelets, and how important platelets are during cancer treatment. Platelets are crucial for everybody to help with clotting and to stop bleeding. If these platelets are low and a person doesn’t have enough of them, it can then become life threatening.
The eight rounds of chemotherapy that Evie received had a huge impact on her platelet levels. The drugs she received affected her bone marrow, which is the site of platelet production. Evie had regular blood checks to check her platelet levels, and we were told to look for vital signs of low platelets, which included bleeding gums, nosebleeds, bruising easily and a petechiae rash (tiny red/purple spots which appear in a cluster).
It turned out that for every round of chemotherapy that Evie received, she required a platelet transfusion. One cycle of chemotherapy took a huge toll on her platelets, so she needed two transfusions to get her levels up to where they needed to be.
We managed to catch Evie’s neuroblastoma quite early on, before she displayed any symptoms. Unfortunately, most other cases that we’ve seen on our journey have been diagnosed as high-risk stage 4. Evie’s diagnosis was stage T2, classed as intermediate risk. The children we’ve seen going through the higher-dose chemotherapy have needed multiple platelet transfusions for every round of chemotherapy they’ve received. These are so vital for anybody going through cancer treatment, as well as blood transfusions. In total, Evie needed eight blood transfusions and nine platelet transfusions. She then went on to have 12 rounds of radiotherapy and six months of maintenance chemotherapy.
Evie's treatment worked exceptionally well and she was able to ring the end-of-treatment bell on her third birthday in December 2021.
Evie ringing the end-of-treatment bell
Other challenges and what helped us
Evie was diagnosed in September 2020 in the middle of the COVID-19 pandemic, which was another challenge we had to face. This meant the hospitals were very strict and, on most occasions, they had the one parent rule in place. Our son, Harry, was 10 years old at the time, so we had to make sure he was doing okay and that Evie’s diagnosis didn’t affect him too much.
We were open and honest with him from the beginning of Evie's diagnosis and the Royal Marsden Hospital was amazing at providing children’s books so we could explain to him what Evie was going through in a child-friendly manner. We had a lot of support from family members, and my parents were able to look after Harry when COVID rules allowed.
We’re so grateful for all the amazing care Evie received during her treatment. I’d say to anyone currently going through this to trust the healthcare professionals, but also don’t be afraid to ask questions and trust your instincts as a parent as you know your child better than anyone.
Evie during treatment
What life looks like now
Evie is now a confident, loving six-yearold. She attends school and is doing really well. She has regular check-ups and has recently had a routine sixmonth scan at the Marsden. She also has regular heart echo tests to check the effects of the chemotherapy, which so far have all come back okay. Luckily, Evie doesn’t remember too much about her treatment and is thriving.
She's now enjoying swimming again, something she couldn’t do during her treatment due to having her Hickman line in place. We now take great pleasure in watching her participate in her swimming lessons. We never take any day for granted, and we look forward to seeing what Evie will achieve in the future.
From Contact magazine issue 109 | Winter 2025
