William was just 9 months old when it was discovered he had Hepatoblastoma and began his treatment at Christchurch Hospital, which continued during the country-wide Lockdown period. His Mum Sabrina shares their journey this year.
When William was born, we discovered he had a genetic condition called Beckwith–Wiedemann syndrome (BWS), which is an overgrowth disorder. Unfortunately, this condition makes him more susceptible to some childhood cancers, including Hepatoblastoma and Wilms Tumours. William was being screened regularly with monthly blood tests and quarterly scans. It was during one of these routine scans in November last year when we received an abnormal result. On Christmas Eve he had a second scan and we found out it was most likely cancerous.
Over the New Year, we had an MRI and a biopsy, and it was very quickly conﬁrmed that William had Hepatoblastoma, at that point he was just 9 months old. Very quickly we were on the treatment cycle and during the ﬁrst couple of trips down to Christchurch, the team at the Children’s Haematology Oncology Centre at Christchurch Hospital talked us through all the treatment options. We are based in Wellington, so it was a huge upheaval for the family to have to be split up to travel to Christchurch. It wasn’t clear from the beginning what treatment would look like and whether we would be able to come home between treatment cycles. Our daughter, Charlotte, is 3 years old and so we had to consider the impact it would have on her to be uplifted from her home or to spend time away from both her parents.
That was probably one of the worst parts about the whole journey, the family being split up and having to spend time away from our other child during this time. From that perspective it was extremely tough.
Initially, myself and my partner Stephen took it in turns to make the journey to Christchurch. Stephen did the ﬁrst trip, and after 3 days in hospital we were sent to Ronald McDonald House South Island. Staying at the Christchurch House was like staying with an extension of your own family. We met other families going through very similar things as us, but we found it very grounding to be in that situation.
By that time, we knew that William’s chances of recovery were very high as his cancer was caught early. We were looking at 3-4 months of treatment and being away from home, versus some families we met who had been staying at Ronald McDonald House South Island for 8, 9, 10 months and some even longer.
While William was in the Hospital, we were essentially stuck in the Hospital Ward. We couldn’t leave William’s side as he was only young, he was hooked up to all sorts of machines and he wasn’t at an age where he could entertain himself.
Going across to Ronald McDonald House South Island meant we could talk to the other families and sit down for dinner, which wonderful people prepared for us most nights. It was great to have a place which felt like a home and to get some rest from the Hospital Wards.
Then COVID-19 hit. Thankfully, William’s treatment still continued, and so Stephen travelled back and forth to Christchurch, while I stayed in Wellington with our daughter and kept our online business running. Stephen stayed in Christchurch for most of the nation-wide lockdown period. While William was in Christchurch Hospital, Stephen was unable to leave the wards due to the COVID-19 restrictions, which was very hard for him. They spent four days in the hospital ward where Stephen relied on the nurses to come in and relieve him so he could do something as simple as make himself a cup of tea, it was pretty brutal. William was doing so amazing through all of this; he just took it all in his stride!
On William’s ﬁrst birthday he had surgery to remove half of his liver. Once we were discharged, we weren’t able to go back into Ronald McDonald House as they were still in lockdown, however we were put into one of the hotels nearby.
The wonderful team from the Christchurch House made sure we still felt at home there, there was always a fridge full of food and lots of toys for William to play with. It really was the next best thing to being at the House.
In May this year William got the all clear, and he will continue to have regular scans and check-ups. William is now 18 months old and is very much a rough and tumble type of boy! When he was diagnosed he was just a baby so it’s incredible to see him running around as a toddler.
During such a challenging time for us as a family, I have very fond memories of staying at Ronald McDonald House South Island. Like a number of people, I had heard of the Charity and seen Ronald McDonald Houses around the country but staying at the Christchurch House was a real eye-opener for us. I had no idea of the amazing work the team, volunteers and supporters do for the families with a child undergoing medical treatment, and the eﬀort made by the team to continue to look after us while we were in the hotel during lockdown was just so unexpected, it was wonderful!
Every step of William’s journey was made signiﬁcantly better for us because of Ronald McDonald House South Island. I wanted to give something back to the amazing facility which helped us so much during this time so I started my own fundraiser in March. I didn’t quite hit my target due to entering lockdown, but it was the least I could do!
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