In 2018 Austin Rothwell (12) was diagnosed with acute lymphoblastic leukaemia (ALL). Austin was in intensive care for three months and spent a year learning to walk again. He now attends regular clinics at the Royal Victoria Hospital, Belfast, for maintenance cancer treatment. His mum Nicola shares his story.
“Austin turned 11 on 29th May 2018. He was by all accounts fit and healthy. The day after his birthday he got out of school and said he had a lump on his neck. I felt his neck and his glands were swollen. He also had some swollen glands at the back of his head. Austin has severe anxiety and was very worried about his neck. I assumed he was coming down with a throat infection, so I made an appointment for him to see the GP the next day.
That morning Austin took his pyjama top off and I noticed tiny bruises over his back. It was very odd as they took the shape of his backpack. At the GP we showed the doctor his bruises and told her about his glands. Sure enough, she agreed that they were swollen and also thought the bruising was odd. She asked us if she could have a blood sample to check Austin’s clotting factor. He was very anxious, and it took 25 minutes for him to agree. I remember feeling ok about it all and not too worried as the doctor was very calm.
‘We believe he has Leukaemia’
We carried on with our day, picked the kids up from school and went home. Around 5pm that evening we were all sitting having dinner talking about what to do for the weekend as the weather was wonderful, when phone rang. It was the GP. She said,
“Hello Mrs Rothwell, I am very sorry to have to do this over the phone but as it is Friday it cannot wait until Monday. Austin’s bloods are not good and I’m afraid we believe he has leukaemia. Please make your way immediately to the Royal Belfast Hospital for Sick Children where a doctor is expecting you.”
‘Am I Dying?’
My entire body went cold, and I fell back against the wall. I looked up the hall to where Austin was standing, and he began to scream – “What’s wrong? Mummy am I dying?” He had not heard the conversation, but he knew by my face that something was wrong. I told him things were going to be Ok, but we needed to go to the hospital for more tests. Within hours Austin had bloods taken and an IV up. We had no idea that day about the journey that was to come. On Monday we were told that Austin had acute lymphoblastic leukaemia (ALL) and he was to start induction chemotherapy immediately.
Induction usually lasts about five to six weeks and treatment is given as an inpatient. We set up a calendar and started to tick off the days until Austin could come home. At first, he was coping Ok. The steroids made him very hungry and a little grumpy. It was very hard that he couldn’t see his sister and brother. My husband Kevin and I were like ships in the night, passing with a debrief of what had happened during our time with Austin.
Austin had a central line put in, his hair began to fall out and I could see my boy start to fade from his usually bright and brilliant self. So many things happened over those five weeks that I remember it like a dream and doubt if it did happen at all.
During the last week of Austin’s induction, he started to become unwell. We were assured that this can be normal, as induction is one of the riskiest times for a child. Austin began to breathe a little fast and his tummy began to swell. One night he started seeing things and became very agitated. Five weeks in I was used to Austin vomiting, something that terrified us both in the past became normal. However, this night it was different. Austin vomited bright red blood and a lot of it.
Over the next few hours his blood sugar level dropped though the floor. Nurses were squeezing glucose gels into his mouth and then I heard the words ICU. Austin was taken there at about 2.00am. I couldn’t phone my husband as he had the kids. In ICU Austin was put on high flow oxygen. The doctors were clearly concerned but were not giving too much away. In the morning I called Kevin and some friends, who went to pick up the kids so Kevin could be with Austin and I.
The Darkest Days
The next three months became the darkest days and I still can’t believe we actually lived them. Austin deteriorated fast and was ventilated. Over the next few weeks Austin’s stomach got bigger and bigger and the doctors told us that things were not good. He had developed sepsis and was extremely unwell. The source of infection was his bowel. Surgery was a possible solution, but Austin was too sick for surgery. The chemotherapy that was there to kill the cancer cells had done a good job, almost too good a job. Austin’s bone marrow had stopped working and he was being pumped daily will units of blood, plasma, platelets and all sorts.
There came a point where Kevin and I were taken to a quiet room and told that the chances of Austin surviving were very slim, and that we must prepare ourselves for the worst. It is a very odd feeling being told your child is likely to die. It is a numb feeling but as a mum I knew they were wrong. After two months in ICU things were dire. August came and the doctors sat us in a room again. They told us Austin was going to die. The only thing that would save him was surgery to remove the necrotic bowel inside him. However, by having the surgery they said he wouldn’t make it – his only chance of survival was also going to kill him.
We decided to give the surgery a chance. We owed that to our beautiful boy. Eight long hours went by. We sat in the quiet room and prayed. We had people all over the world praying during Austin’s surgery. Afterwards, the doctors explained that the surgery was very difficult, and they almost lost him on several occasions. I went to the door of his room and eight nurses and doctors were around him. He was so pale he was grey. He actually looked like death. Over the next seven days Austin had to go into theatre four more times. Each time we had to sign forms saying that we understood that he may not make it.
Learning To Walk Again
After three long months Austin was taken off the ventilator and moved back to the ward.He spent the next year learning how to walk and move again. His time in ICU had caused his muscles to atrophy. He was unable to eat and was tube fed for many months. With God’s grace, Austin began to gain strength and learn to walk and eat again. He has had a few hiccups along the way with kidney stones and pancreatitis, but he just got on with things. His chemo journey was tailored for him and we are currently about 12 months into the maintenance phase of his treatment. In June it will be two years since Austin started his cancer journey. Sometimes it feels like a lifetime and other times it feels like yesterday.
A New Level of Anxiety
Austin always had anxiety pre-diagnosis, but his cancer has caused a new level of anxiety. He needed to use a wheelchair for nearly a year and his confidence took a massive slide. Austin was in P7 when he was diagnosed and then missed his entire first year of secondary school. When he returned to school, he had to start 1st year with again, with a new peer group.
Austin finds it hard to make friends and became a shadow of himself. He has a sister, Ingrid who is 10 and brother Bruce who is seven. The impact of their brother’s diagnosis on Ingrid and Bruce has been immense. We were in the middle of moving to a new house when Austin was diagnosed with ALL and living in temporary accommodation. The kids felt like they had no safe place to go. They didn’t have their things around them, and the days were very hard.
At one point our temporary accommodation ran out and we needed to stay in a home from home for three months. We felt displaced and very uncertain. Thankfully, we are in our new home now, but a wound has been left on all of us. The kids took a long time to get into a sleep pattern. Bruce still cries out in the night and Ingrid worries every time Austin leaves the house in case he does not come back. A huge worry had been placed upon them that they should not have had to experience. Cancer steals your independence and steals your joy.
Daisy Lodge Has A Special Place in my Heart
Daisy Lodge has a very special place in my heart. We had our first visit about eight months after Austin was diagnosed. He was unable to walk and was using the wheelchair full time. We had endured a really rough time and were hesitant about going somewhere other than home or hospital.
We stayed during a quiet mid-week break with three other families. When we arrived the views of the Mourne Mountains instantly began to melt away any tension we had. Honestly, it’s like you are a celebrity in a fancy hotel. Nothing is too much trouble and the food is incredible.
Our therapeutic short break gave us something we forgot we needed – it gave us our family back. It gave us time to be together without hospital or treatment. It gave us back laughter, which we hadn’t heard for some time. It also gave us hope. Hope that things were going to get better. Sometimes hope is all you have on your cancer journey, but even that can disappear over time. We felt renewed and ready to take on the next challenge.
Residential Group Support
Austin was signed up for residential group support last year, but he felt he just couldn’t do it. The chance came for Austin to go a second time and because he was walking, he felt he might give it a go. This was a two night residential where the young people, along with their Cancer Support Specialists have fun, play games and talk.
Austin was very anxious about staying in Narnia because of some of his medical needs. Cancer Fund for Children arranged for me to stay in Daisy Lodge whilst Austin was in Narnia and at night he could come and stay with me. I really thought that he would be stuck by my side and drop in and out of the activities. The team advised me to let Austin get the bus down with everyone else as its great craic! So even though I was going down, we dropped Austin off at the bus. He was like a rabbit caught in head lights. Needless to say, over the two days I barely saw him.
Being at Narnia Lit a Spark in my Boy
I had actually forgotten what my son was like before his cancer diagnosis. Being at Narnia lit a spark in my boy that I had not seen in a very long time. For the first time, in a long time I saw Austin as a 12 year old boy. His shoulders were light, and he was actually living and loving life. This feeling came home with him. It spread and we saw a real difference in him. He came home and started to count down the days to the next residential.
The young people started a WhatsApp group and a phone that lay uncharged for a year was suddenly pinging every few minutes. I could hear him giggle and he had a real spring in his step. He had the best time of his life and his confidence grew exponentially over those two days. He even said that next time he went on residential he was going to try and sleep in Narnia. For a boy who has never slept anywhere but home (and hospital), this was huge.
Austin told me that being around people that he doesn’t have to explain things to is liberating. He didn’t have to explain if he felt tired or nauseous as they all understood. All the young people have been through their own cancer journey. They get each other without having to say a word. They can joke and laugh at things that we will never understand. The peer support facilitated by Cancer Fund for Children is hugely important.
Support during COVID-19
Covid-19 came just as Austin was about to go on his second residential. We were called by Cancer Fund for Children’s Specialist Joe, who told us that the trip was being postponed, but they would be in touch. To say Austin was devastated was an understatement. I was also very sad because I knew the transformative impact getting away would have on him.
I really wondered how Cancer Fund for Children could continue to offer support. Within days a Zoom meeting was set up. I was a little unsure how Austin would respond, but two hours later he emerged for his room beaming. I totally underestimated how important social contact of this kind was to Austin.
He has had a weekly Zoom chat with the charity’s Cancer Support Specialists ever since. They just understand these kids. They listen and engage with them on a level that mums and dads cannot. As parents we worry about cancer treatments and side effects, about income and the impact of cancer on our other children. Sometimes we just don’t have the mental capacity to deal with the other stuff. Cancer Fund for Children let our children be children. They allow our kids to escape for a time and to be free from treatment and worry. It’s a very special gift they give our children.
Self-Isolating During Coronavirus
I totally understand that most families going through cancer are no strangers to this isolation life. It’s a bit of a kick in the teeth for those of us who were just beginning to emerge from our cocoons only to have to zip it back up again. Just remember there are lots of families like ours and we are not alone. Take this time to make amazing memories – bake, play games, read books, plant seeds and watch them grow. In years to come as parents we may well remember the financial struggle and employment worries, but our children will remember this as a time we had fun and tried painting self-portraits together and learned how to cartwheel. Be easy on yourself and use the wonderful resources and activities that Cancer Fund for Children provide for families to do together.
Laughter and Joy Came to the Forefront
If I could bottle the feeling that Cancer Fund for Children’s support has given my family, it would be stockpiled like hand-sanitizer and hard to find. Cancer by its very nature can easily take over and overwhelm your world. Cancer Fund for Children have helped us learn to live with cancer. Thanks to the charity’s support we were able to put cancer on the back burner and joy, laughter and relaxation came to the forefront.
Cancer Fund for Children helped us simply be a family again. Without the support of donations this is in jeopardy. We are living in unprecedented times and because charity events cannot happen right now, donations are not coming in. Even in these strange times Cancer Fund for Children are offering light in the darkness. Your donations are so important in ensuring their work continues. Please help our children be children and learn to laugh and love again!
We are so grateful to Nicola for sharing her family’s experience of cancer. Vulnerable children and young people like Austin, Ingrid and Bruce need our support now more than ever. Please, if you can, donate what you can today to help us support more families like Austin’s.