Harper's story
Harper was diagnosed with Stage 4 High Risk Neuroblastoma at just one-year-old in 2023. Despite a relapse scare and some side effects from her treatment, two years on from her diagnosis Harper has no evidence of disease (NED) and is about to start nursery. Harper's mum Jenny shares her story…
Diagnosis
In February 2023, we noticed a small bruise under Harper’s right eye. Initially, we just assumed she must have pulled down a toy which hit her in the face. She was otherwise really well and happy. Then the bruise grew and spread under her eye and her eye looked as if it had moved out of alignment.
We took her to the doctor who told us to come back in two weeks if the bruise was still there, but we weren’t happy with this and asked for a referral to an eye specialist. We managed to get an appointment, but before we could go Adam was taking photos of Harper and noticed that the bruise seemed to have grown and changed again.
We called 111 and were advised to take Harper to A&E. We were then sent to a specialist eye hospital. The doctor told me we had done the right thing bringing her in - the misalignment of her eye was a red flag.
“From there, everything was a whirlwind. I remember hearing the word ‘oncology’. But I still didn’t click that Harper might have cancer.”
I suppose I just didn’t want to think it could be anything that serious. Adam pointed out that we had been placed next to a cancer ward, it was an enormous shock for us both. The following morning, Harper underwent a body scan and CT scan. We were told that Harper had a mass in her face that had shown up clearly on the scan. She would need a biopsy to determine whether it was cancerous. About a week later, we were told she needed to come in to have a central line fitted. When we heard those words, we knew it was cancer.
“The consultant told us that Harper had neuroblastoma, but we were warned not to Google it - if we did, we would not like what we would see.”
I had never heard of neuroblastoma, but Adam remembered that Bradley Lowery had passed away after his battle with it. And suddenly the realisation of what we were facing hit us. It was a shock.
Treatment
Harper started chemotherapy within four days. We were told she had a 50% chance of survival and a 60% chance of a relapse, with only a 5% chance of survival if she did relapse. Those aren’t statistics any parent wants to hear. We were warned she would lose her hair and that there was a high chance she would never be able to have children because of the treatments she would need.
Her 80-day Rapid COJEC treatment began: eight rounds of treatment for two days, every ten days.
Harper spent 31 of her first 50 days following diagnosis in hospital. Every time she had a temperature, she had to go in. But by July, her primary tumour (in her adrenal gland) had shrunk and there was no sign of any of the other tumours that had spread around her body. It was good news, but there were still undetectable cancer cells in her body.
In August, she had surgery to remove her primary tumour and she was fortunate that because of its position, the surgeons were able to take it out entirely. Her stem cells were then harvested and she was ready for high dose chemotherapy, which began at the end of August. It was a tough time - she spent 40 days in hospital, in isolation and was so poorly, needing a lot of care. Adam and I took turns staying with her, but her siblings were not allowed any contact with her at all during that time which was extremely hard for them.
By early October, Harper was home and we started planning a holiday to Wales. However, while her scan results were good, she had developed an infection from her central line and suddenly everything looked bleak again. She was admitted to hospital where she needed oxygen and soon deteriorated to the point that she was moved to intensive care and intubated.
“We were told there was a 50/50 chance that we could lose her.”
Fortunately, Harper turned a corner and was back on the ward a few days later. She started radiotherapy in December, but was able to have Christmas at home with the family which was very special. She should have started immunotherapy, but due to a dangerous reaction to it she was put on a different treatment.
A few weeks later Harper was admitted to hospital as she developed a temperature. On having a blood sample, her blood work was all over the shop. Adam and I spent the weekend at the hospital, scared to death that our little girl had relapsed! The hospital agreed Harper needed urgent scans to rule this out, and they couldn't come soon enough. Our consultant, who I trust more than anyone, believed it was the medication but agreed to do scans to make sure. A couple of weeks later, we got the results that Harper was still NED! Harper continued on her medication for another 2 months, but was monitored closely by the professionals.
In June 2024, Harper finished her protocol treatment. Her NG tube and Hickman line were removed the weekend before the celebration we had planned for her, so she was able to run around carefree! Following this we had our first trip to America to start DFMO which we fundraised for throughout her treatment.
We visited the USA for two visits in July and October 2024 to access the DFMO medical trial at the hospital in Hershey, PA. The trial was approved in 2023 which meant it was allowed to be used to officially treat Neuroblastoma in the USA, and shortly after it became available in the UK, for eligible patients via a medical exemption. Our consultant applied and we were approved to access the medication from our local hospital.
Harper still has regular blood tests, and urine samples to check for any changes, but it has meant that we do not have to have the invasive MIBG scans, and make her drink iodine prior to the scan. This was naturally a very traumatic experience for Harper, and even though the scans are beneficial, we have been told by professionals in the UK and the US that the catecholamine tests are the best early indicator of signs of relapse.
Looking forward
Harper has now been on DFMO for 12 months. As a result of the medication, her hearing has deteriorated further. She is now considered to have severe hearing loss, leading to her recently having her hearing aids changed to stronger ones. Harper uses a microphone at her private nursery placement to help her access the learning. We have also noticed changes to Harper's hair and skin. Her hair is very thin, especially at the sides, and her skin is extremely sensitive, often having flareups or eczema and dryness. She was so excited when her hair started to grow back, so we are trying lots of different products to try to help re-growth. Despite the side effects, and after lots of consideration and difficult conversations, Adam and I both agreed that we would continue with this treatment.
“We both think that the risk of relapse outweighs the impact on her hearing.”
We now have 12 months left of DFMO, and Harper is starting nursery in September. We are excited as it is a huge milestone, but also apprehensive due to her hearing. We will always be Harper's biggest supporters, and advocate for her in the right way. She continues to thrive, and proves how much of a fighter she is. We couldn't be prouder!
Despite everything that has been thrown Harper’s way, she has taken everything in her stride. She has dealt with so much, but she is a fighter and very much wants to be here.
“She is sassy, with plenty of guts and determination. We are truly in awe of her.”
It has been a tough journey for the whole family
As parents, it has been a difficult journey. Everything we have been through is only now beginning to sink in. We have handled the situation very differently, with Adam preferring to just get on with it privately, whereas I have found solace and support in talking to other neuroblastoma families. Nevertheless, we have been a strong team. It has been hard on our other children too. While we have been open with them about Harper having cancer, we have been careful not to give them too many details or get upset around them.
Two years on since her diagnosis, we feel optimistic about the future and know that, so far, Harper has been one of the lucky ones. It is hard to hear that other families that we have got to know on this journey have sadly lost their little ones. Of course, I always fear that she will relapse and every time she gets a cold, I get anxious. But we have to be hopeful that she will be the one to change the world and be cured.
