Hundreds of children undergoing grueling cancer treatment will this year spend Christmas in hospital. Imagine if there was something you could do to make them feel a little bit better…
As Claire and Matt Bermingham prepared for their little boy Archer’s third birthday, little did they know that their entire lives were about to be thrown upside down.
The night before his big day, Archer developed a fever. A dose of Panadol soon put things right, but when the fever continued to spike over the next couple of days, Claire thought it best to get him checked over by a doctor. A UTI was suspected and then quickly ruled out when urine tests came back clear. The next day, Claire noticed Archer had developed a limp and a tiny red speckled rash on his abdomen.
‘Our GP recommended taking him straight to our nearest Emergency Department for imaging and blood tests,’ explains Claire. ‘We were still pretty relaxed at that stage, we weren’t expecting anything sinister and were more concerned about Arch getting distressed at the hospital – he was one of those kids that hated even having his temperature taken back then.’
Almost immediately, the Bermingham family were swamped by medical staff and all number of terrifying possibilities. Doctors discovered that Archer had no white blood cells (neutrophils) and so he was hooked up to intravenous antibiotics. Archer’s blood tests were sent to Brisbane in order to confirm a diagnosis. Within an hour, the Bermingham family’s worst fears came true.
Archer was diagnosed with B-Cell Acute Lymphoblastic Leukaemia; an aggressive blood cancer affecting the B lymphocytes (a specialised type of white blood cell).
‘Archer’s bone marrow was found to be full of leukaemia and overflowing into his blood stream. We were just devastated. It’s not something you ever imagine you’ll hear, and I remember feeling like I just couldn’t catch my breath. I was holding onto my baby daughter so tightly just to keep myself upright. In that instant, you imagine losing your child and having to go through life without them. That feeling never quite leaves you.’
Archer needed an immediate platelet transfusion, requiring the family to leave their home in Lennox Head and travel to Brisbane. ‘Arch was accompanied by a specialised nurse to monitor the transfusion. We arrived in Brisbane just before midnight and the rest is a blur’.
After the initial shock wore off, Claire and Matt went into ‘fix-it’ mode, sourcing as much information as they could around Archer’s treatment, drugs and possible clinical trials and reorganising their lives around Archer’s medical needs. ‘I just tried to keep busy and give Arch as much normality as possible. But I don’t think we slept or ate for a week after diagnosis’.
11 months on, Archer is still undergoing treatment. ‘We lived in the hospital coming and going at all hours, moving through three different charity units in six months with a 3-year-old and an 18month old. I still wake up in the night and have to check where I am.’
‘His treatment has included steroids alongside intensive chemotherapy, which he’s received as intrathecally (directly into the spinal fluid) intravenously, subcutaneously and orally’.
So far, Archer has experienced hair loss, nausea, mouth sores, damage to the lining of the digestive system, vomiting and changes in appetite and tastes as a result of the chemo. He is frequently fatigued, has spent weeks at a time on morphine drips for pain, and can be irritable when his Haemoglobin is low. Early on, Archer also experienced frightening hypothermic episodes due to steroids and high blood pressure from the various medications.
‘Arch stopped walking for 3 months at diagnosis and has struggled with mobility throughout treatment. This is potentially a long-term effect. We just have to hope that it slowly improves.’
‘Although these are all pretty standard treatment side effects that families like ours have to deal with, Archer’s treatment is the thing that really keeps me up at night. We’ll do anything we can to give him the best possible chance, but chemo is a cruel beast and for all the good it does fighting the cancer, it does just as much bad to his tiny body.’
‘In the early stages we were just so focused on survival, we didn’t give much thought to anything else. But the further we get into treatment, the more we can see the kinds of long-term scenarios we might be facing. There have been days when I’ve just felt so helpless and frustrated that there isn’t a kinder option. Our kids’ bodies have to process ancient, adult drugs which can cause a lifetime of side effects – impairments, organ damage, learning difficulties and the ever-looming risk of secondary cancers. We’ll just have to wait and see what combination comes our way.’
Today, Claire tries to focus on the positives. Archer is responding to treatment and his recent Bone Marrow Aspiration was found to be clear. ‘He’s doing really well and we’re so lucky to be where we are. He’s still in the ‘hangover’ period from treatment so there’s a lot going on in his body, but we’re constantly reassured that it’s all part of the process and he should be more comfortable in the next few months. He’s looking much healthier – his hair has grown back, his skin has a bit of colour and he’s having longer bursts of energy.’
Archer will continue treatment for the next 15 months, at which point he will have another BMA to make sure there is no disease still present. He is now in a transitional phase of treatment, meaning he doesn’t currently have to attend numerous appointments and undergo procedures. ‘We do relatively normal things all day long and come home and administer chemo in our kitchen. It just feels bizarre, like I’ve been running on a mouse wheel for 11 months and I don’t know how to slow down. Archer has suffered from a lot of anxiety and procedural trauma. It was hard to get him to leave the house for a while. We still have tough times, but he’s slowly rebuilding confidence and enjoying things a little more.’
Archer was recently gifted a Buddy Box by supporters of Australian cancer research charity, Cure Cancer. Filled with fun, interactive and practical items such as water bottles to stay hydrated during treatment, cosy bed socks for overnight hospital stays, and games and toys to help take little minds off grueling therapy rounds, the boxes are produced in consultation with children’s hospitals and cancer treatment centres across Australia.
‘The day of a child in hospital is often filled with traumatising, scary, painful procedures, and a whole lot of strange faces, big words, weird smells, lots of noises…it’s overwhelming, terrifying and completely foreign for a child. The Buddy Box gives them a chance to think about something else. It breaks up the fear and allows them to focus on something positive, something to enjoy and distract them. But most of all, it reminds them that despite what they’re going through, they’re still a kid. And that’s just priceless!’
All profits from The Buddy Box will be invested into supporting groundbreaking research from scientists like Dr Laurence Cheung, whose work is specifically focused on reducing the impact of Acute Lymphoblastic Leukaemia and lessening the short- and long-term side effects of traditional treatments for children like Archer.
‘Until you see someone you love suffer through this, you just can’t appreciate how much we need changes to treatment options,’ says Claire. ‘Change takes research and research takes funding. By purchasing a Buddy Box, you’ll be contributing to this funding whilst bringing joy to a sick child. It’s a no brainer!’
Help Cure Cancer deliver 1,000 boxes to little hands in need this Christmas. Purchase a Buddy Box today:
curecancer.com.au/buddy-box
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