Harper's story

Harper was a year old when she was diagnosed with Stage 4 High Risk Neuroblastoma in April 2023. A year on since her diagnosis, her family are hopeful that, with further treatment, Harper will remain healthy and happy. Harper’s mum, Jenny, shares her story here…

Harper was happy & healthy…until a strange bruise appeared under her eye.

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 just 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 not until the end of April. Nearly a month before we were due to go, my partner, 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. As it was Good Friday, Adam stayed at home with our other four children and I went to the hospital with Harper. The doctor there 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.”

From there, everything was a whirlwind. We were told we would be admitted and 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. Then Adam arrived to bring us an overnight bag - he 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. With it being Easter weekend, there were not enough specialist staff around to check the results. One doctor told us he’d had a brief look and that everything looked fine, so we were sent home and told not to worry.

I rang every day trying to find out more information and eventually we were called in for an appointment. 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 saw. 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.

Chemo started right away

Harper started chemo 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 chemo 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 to stay 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. We were looking forward to getting away for a few days in Wales, having had to cancel all our holidays since Harper’s diagnosis. But 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.

“We are desperate to take Harper for treatment in America.”

Fortunately, she 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 in January, but due to a dangerous reaction to it which saw her heart rate go through the roof, she has been put on a different treatment and has just finished the third round, with three more to go. This will mark the end of her treatment in the UK.

However, throughout Harper’s treatment we have fundraised so that we will be able to take her for an alternative treatment in America and have been lucky enough to secure the amount we need. This will be a maintenance treatment that will hopefully reduce the chance of her having a relapse. Hopefully, she will be able to start this in July - it will mean numerous trips to Philadelphia over the next two years.

“Harper is a real fighter… we are utterly in awe of her”

Harper has always been such a good girl. She was an easy, happy baby and despite everything that has been thrown her 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. And they have got stuck in with all our fundraising events to support her.

“We know that so far, Harper is one of the lucky ones. “

A year 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.

More needs to be done

Sadly, much more research into neuroblastoma is needed. At Neuroblastoma UK, we strive to fund research into new, more effective and less punishing treatments for children with this rare cancer, like Harper. Donate today to Neuroblastoma UK, to help save young lives.