Arlo’s story

Hannah and Nikki are mums to Arlo, who was diagnosed with cancer just a day after his first birthday. Here, Nikki shares their family’s story.

“In November 2019 Arlo got poorly. We put it down to teething, but all of a sudden he got a rash on his bottom. We took him straight to the doctors who told us he was constipated and that’s why he wasn’t feeling too great and they sent us away giving us tips how to help. Later that night Arlo was taken to hospital where we were given more meds and creams.

Days past and Arlo was no better. He was sick all the time and was just ‘out of it’. We noticed his nappies weren’t wet and he was dehydrated, so again we rushed to hospital for an overnight stay and the next day were discharged with gastroenteritis.

A few more days had passed and we were doing everything to make Arlo comfortable and well, he always had a smile on his face throughout all the pain. It was his first birthday party, we had family over, and that night he was rushed again to hospital because he was just limp.

We got to the hospital and we are so glad we did. The next day I got a phone call from the doctor asking for myself to come in. His other mammy was with Arlo and I asked why, they explained that they were trying to keep Arlo alive but his potassium levels were dangerously high and about to send him into heart failure. He was given a catheter as he still hadn’t had a wee and his little body was holding two litres of urine. This lead Arlo to have double kidney failure.

We were transferred to the RVI hospital in Newcastle for scans. The next day we were told a day after his first birthday, 4.12.19, Arlo had cancer.

The next few days were full of biopsies and scans and plans what to do and they came to the conclusion that Arlo was going to have nine rounds of chemotherapy, radiotherapy and surgery.

As a mama in a lesbian couple I was scared that I wasn’t going to be treated like a mam to Arlo as Hannah is Arlo’s birth mother. I am not on the birth certificate as we had a private donor. I was scared I wasn’t going be treated like Arlo’s mum, but the RVI hospital in Newcastle didn’t make me feel left out. I was able to sign paper work, make choices with Arlo’s treatment, was involved just like any parent. I was Arlo’s mum.

My family came to visit Arlo, my mum, dad and grandma and before we left my grandma had a stroke next to Arlo.

The day after, Hannah’s waters broke, she was pregnant with our second child, so we had Arlo in the cancer unit, my grandma in ICU and now us both mummies in the maternity unit. When Hannah was having contractions we were told what kind of cancer Arlo had. He was diagnosed with stage 2 rhabdomyosarcoma in the prostate and bladder. The next day our second child Odin-Rex was born.

Odin met his big brother in the cancer unit and the day after, 12.12.19, Arlo started chemotherapy. Arlo went on to have nine rounds of chemotherapy. He had ports and an NG tube put in, he lost his hair and it was so heart-breaking.

After two rounds of chemotherapy his lump was shrinking and they were so happy with how Arlo was coping.

Arlo was then accepted to have brachytherapy in London for one week which went really well and after nine rounds of chemotherapy he had no surgery. In May 2020 he celebrated and rung the bell.

Arlo this year in 2022 will be two years clear. We were told they didn’t think Arlo was going to be here that night, and now Arlo’s kidney function is back to normal.

Arlo has check-up scans three times a year and in London once a year. Arlo is being assessed for autism, he loves his baby brother and has just started nursery we are grateful and blessed to have him here with us today. He is one very loved little boy.

He ended up having double kidney failure. I would always say to trust your gut feeling with your child. In that moment we knew something was wrong. I didn’t even think kids could get cancer. You never think it’s going to be your bearn. It’s something you see on the TV – but not your own. When we got the diagnosis we went into relief mode – just knowing at least what it was that was wrong. We just thought let’s get through this and have a positive outlook. We were just in this mode of thinking he has to get better.

Now that we’ve finished treatment, it’s hit us now, hard. We were in London when the news about lockdown broke and as soon as we got back we went into lockdown. It was crazy. At a time we needed that family support, we couldn’t have it.

We had so much support in the hospital, people would come over and talk to us and make sure we had everything was needed. I can’t fault their support.

When Arlo was first diagnosed we got a grant from Young Lives vs Cancer which helped so much, I worked part time looking after elderly people and had to stop work. I couldn’t focus.

Funds like that helped towards our bills, travel, daily life things, it was such a big help. It’s about an hour and 15 to the hospital and quite a trek.

Going through cancer has massively changed our lives. I didn’t think we’d ever go through something like that as a parent. I was lucky to not face any challenges being a gay mum and honestly if I did I would complain all my family were treated right, myself and Hannah were treated like parents and it made the experience a lot more stress free.

It has given us such a different perspective. We are so, so, scared that the cancer will come back. It is important to us he is thriving in everyday life and at nursery now.

My advice to anyone going through cancer would be: don’t be pushed aside or made to feel less important in your child’s health during such a hard time; remember your worth and that your child NEEDS you.

He was so young, Arlo is non-verbal and being diagnosed with autism. We were so blessed in a way he got it so young, it was nice after a few rounds of chemo he just got on with it.

We were all broke and crumbled but he was just laughing, watching TV, he did so well.”