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A Journey Shared Together

Cousins Connor and Darcy both experienced the rare childhood cancer neuroblastoma. Image: Jess Burges/ exposure.co.nz

A Journey Shared Together

Discover how two sisters living across the Tasman coped with the same frightening family tragedy and found the strength to endure, bringing them closer together

A Journey Shared Together

Sisters Mandy Wilson and Rhiannon Howse have always been close. However, they found themselves bonding even more, as both of their families suddenly had to face the childhood cancer, neuroblastoma. Mandy’s son Darcy, and Rhiannon’s son Connor, both had to battle the illness, despite it not being hereditary. Mandy and Rhiannon have shared their story with MiNDFOOD.

Mandy’s story

Mandy with her children (L-R) Lily, Darcy and Thomas. Photo: Jess Burges/ Exposurenz.co.nz

Prior to Darcy getting sick, I had never even heard about neuroblastoma. We live in Kerikeri in Northland [New Zealand] with my two other children, 15-year-old Thomas and 13-year-old Lily. The children’s dad, Glenn, worked as a fly-in, fly-out surveyor on a mine in Australia, so it was often just the kids and me.

Darcy was six and a half when he was diagnosed. One of the problems with neuroblastoma is that the symptoms are often hard to recognise. I had noticed that Darcy had been having some night sweats but I didn’t think it was anything more than a simple childhood illness.

Then in 2012, my mum [who is a nurse] noticed a small lump below Darcy’s left ribs. She suggested I get it looked at, and given it was a Saturday, I made an appointment to take him to the doctor on Monday.

We went to the GP, who didn’t know what it was, and recommended that we see a specialist at our regional hospital. At the hospital, Darcy had an ultrasound. I still remember it being about 2pm when we were told: “He has cancer; you need to go to the Starship Children’s Hospital today.” By this time, it had only been two days between first noticing the lump and being told Darcy had cancer. I remember driving the three hours to Starship and just crying all the way. Poor little Darcy was next to me, saying, “Am I going to die?” I didn’t know what to say.

When we were at Starship, they took a biopsy and confirmed that Darcy had neuroblastoma. I couldn’t believe it. All I can remember is asking the surgeon, “Is he going to die?” He just looked at me, horrified; he didn’t know how to answer.

Treatment

 

Darcy during his treatment had to undergo an emergency helicopter transfer in 2013

Thomas and Lily were able to stay with my parents in Kerikeri, which was great because it meant I could be with Darcy. Glenn was still working in Australia at the time. I know it was really hard on him to do that but we needed his income to help stay afloat.

Darcy started chemotherapy within days of being diagnosed. I explained to him what was happening and what it meant and that I would never leave his side. He was really accepting of everything even though many of the treatments done to him were incredibly painful and invasive. Tears would sometimes roll down his face but he would not fight it. The chemotherapy affected him really badly. He could not eat properly for 18 months.

As his mum, it was really hard to see Darcy going through that. I just tried to tell myself, “Okay, we are going to get through this”, but when he was so sick and crying, it was just awful. I think you just go to a different place within yourself.

Immunotherapy

After the chemotherapy, Darcy had surgery to remove as much of the tumour as they could. He then had a stem-cell transplant and then radiation. The biggest innovation in treating neuroblastoma is immunotherapy, which trains the body to fight off new cancer cells. At the time, immunotherapy was being trialled in New Zealand and Darcy did not initially meet the criteria. Our doctors campaigned for Darcy to receive immunotherapy on compassionate grounds and luckily he got it.

When we found that out, I just thought, “Oh thank God, now he is going to live!” I knew this was the gold-standard treatment and if we got this, then we had given him everything we could to survive.

The immunotherapy took six months to complete. After that, we were told that Darcy had no evidence of disease, and we were able to go home, and come back in three months. That was slowly extended to six months, and then annually, before we were finally handed over to the regional oncologist. When the doctors told us that, I cried. I was so full of anxiety. It was bizarre; it was great news that Darcy was fine but at the same time, I thought, “Oh God, what am I going to do?”

Going Home

Transitioning back home was hard. I went from focusing 100 per cent on Darcy and his treatment to trying to adjust to our new life. Even though he is really well, there is still a lot that I have to deal with in terms of his health tests and making sure that he is coping in school.

Darcy also has permanent high-frequency hearing loss as a result of the chemotherapy and his left kidney is slightly damaged.

I am never really relaxed anymore. I am constantly thinking the worst is going to happen because the worst has happened. Even now that he is well, I am still worried about him.

Rhiannon’s story

Rhiannon with her husband Gordon, and their children (L-R) – Isla, Connor and Freya. Photo: Jess Burges/Exposurenz.co.nz

I was living with my husband, Gordon, and our two children, Connor and Isla, in Collinsville in north Queensland, when Connor was first diagnosed. Darcy had just come off his treatment in 2014 when we decided to take a family holiday to New Zealand to see Mandy and her family. Connor was three-and-a-half years old.

Connor seemed really happy and well, although I noticed he wasn’t running around as much as he normally would and I noticed he had a slight limp.

When we got home, he began to have temperatures and I took him to the doctor who thought it was a virus. Then Connor started limping and crawling again. I took him back to the doctor who took some blood tests and gave us a referral to see the paediatrician. Then that night, I remember Connor crawling along the ground.

I asked him, “What are you doing?” and he just said, “Oh Mummy, my legs feel really dizzy.” I just thought, “Oh God, something really bad is happening here.” We rang the paediatrician who organised to fly us out that night via the Royal Flying Doctor Service to Townsville hospital.

It was not until they did a brain scan and an MRI that they found all the tumours. The registrar took us into a small room and said, “I’m so sorry; we have found lots of tumours everywhere.” In that moment, I could feel poor Gordon’s heart breaking. We actually had to take him to emergency because we thought he was having a heart attack.

Connor and I flew down to Brisbane hospital the next day, and Gordon took the rest of the family in the car. When we were in Brisbane, the oncologist confirmed it was neuroblastoma. We just could not believe it. We knew what Mandy and Darcy had been through. We were all so upset as a family.

Treatment

After Connor’s diagnosis was confirmed, I just went into survival mode and thought, “We need to try and keep our family normal and we can get through this.”

I didn’t want to make our lives totally about cancer, so we made the decision to move down to Brisbane temporarily while Connor was undergoing treatment. Our friends and family were able to help us fill our rental house with second-hand furniture.

It was really important for us that when Connor could come out of hospital, he was coming into a family environment. In the hospital, there are kids dying around you all the time. As much as you feel sorry for the families, you are in survival mode. You just want your child to survive and be happy.

Mandy was an incredible support, too. She jumped on a plane from New Zealand and came to help us out. At the same time, I was worried about making her relive what she had been through with Darcy.

Connor had five rounds of chemotherapy before he had surgery to remove the tumour. He then had the stem-cell transplant before they hit him with radiation and then immunotherapy.

As much as we would try to make light of it and be strong for Connor, there were plenty of times where it was just horrendous. There were many moments where we would just look at our darling boy and think he was going to die.

He was so sick from the chemotherapy, he could not talk as his mouth was full of ulcers. I am sure I have PTSD [post-traumatic stress disorder] from watching my child go through that.

Connor was amazing though. He was very resilient and wanted to do everything himself. I think that was his way of coping. I think it also helped that he was so young, so he did not really question what was happening. Darcy knew he could die; Connor, however did not realise that.

 

In isolation after his stem-cell treatment, Connor thanked a Channel 9 telethon fundraiser. Pic by Luke Marsden.

Going Home

All up, Connor spent 16 months in Brisbane. He was five when they said we could go home in June 2015.

He rang a special bell they have in the hospital, which means he had finished his chemotherapy. That was a really beautiful moment. We were all crying and thanking the staff all over again.

We now live in Proserpine [in the Whitsunday region; their third child Freya was born last year], and fly back to Brisbane every three months to keep an eye on Connor’s health.

It’s taken a long time but I can now stand down from being in high alert. In the past few months, I feel ready to start giving back. I’m writing a submission to the Senate asking for more funding into childhood cancers, particularly neuroblastoma.

There are times when he might get sick with a virus and I start to worry, and then I think, “For God’s sake, Rhiannon, start thinking positively.”

You can help other families fighting neuroblastoma by visiting the Neuroblastoma Awareness website here

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