Families are never prepared to be told their child has a cancer diagnosis. Theresa was left devastated when 16-year-old daughter Summer was diagnosed with B-cell Acute Lymphoblastic Leukaemia in 2021.
Summer had been suffering from exhaustion for a few months and at work one day her Apple watch alerted her that her resting heart rate was at 179bpm. Theresa took her to get a blood test from the hospital and within half an hour, Theresa was told her daughter had leukaemia.
What followed that shock diagnosis was 16 months of intensive treatment. The severity of Summer’s condition and the uncertainty about whether she would make it through weighed heavily on the whole family. Theresa recalls moments when Summer’s health was at its lowest, with serious infections, aneurysms, and neurotoxicity. During the worst of it, Theresa, was by her side 24-hours a day and shouldered the emotional and financial burdens associated with Summer’s treatment, like every family who faces childhood cancer does.
‘’Summer had multiple life-threatening complications including emergency surgery to plug an aneurysm in her pulmonary artery. She developed further complications with her lungs, had neurotoxicity four times and was paralysed for 10-12 hours and screaming during those episodes.’’
“It was the most awful and stressful thing I have ever seen or been through in my life. Summer suffered greatly; it was unbearable to witness. I was so overwhelmed. I didn’t know what I needed, what I wanted or who I could talk to.”
Summer recalls the first time Redkite came into their lives. “I was given a Red Bag full of everyday basics. It still lives in the car ready to go. It’s good to be organised and have something like the Red Bag, packed and ready to go.”
Redkite offered Theresa the emotional and mental health support she didn’t know she needed. Redkite played a vital role in providing emotional and mental health support to both Theresa and Summer.
Our social workers regularly checked in on Theresa, offering a listening ear and guidance during moments of distress. These conversations, initially met with hesitation due to overwhelming circumstances, gradually became sources of solace and relief for Theresa. Redkite’s childhood cancer specialists knew how to navigate these delicate situations and provide the necessary support.
“As we got more into my treatment, Redkite was incredibly helpful with emotional health and financial support, especially for my mum, I could see it was really hard on her. Redkite Social Workers would call Mum, just to make sure she didn’t feel alone, because we aren’t alone. My mum had to give up some of her business, so we were grateful for the financial assistance. Redkite has been a big part of our journey.”
Redkite also supported Theresa financially. The overwhelming expenses associated with hospital visits, parking, and dietary adjustments strained their budget. With Redkite’s assistance, Theresa could navigate these financial challenges, ensuring that their home remained intact despite the heavy burden.
“When I connected with a Redkite social worker over the phone, I think they could tell that Summer was extremely sick. They called weekly to check in on me and my family. Those calls meant everything to me. Every time I got off the phone, I would say, ‘that just helped me so much’ because I didn’t even know I needed that at the time.
“It’s been a relief to tell somebody everything that’s been happening because I don’t really want to burden anybody else with all that information. You never really know what’s going on with people, but sometimes it’s such a lifesaving thing to have someone call you and check in on you.”
“It’s hard to speak to friends and families who have not had to experience their child go through cancer treatment. Talking to Redkite social workers who specialise in childhood cancer was so essential to me. It was good to be able to get it all out, get it off my chest, like a weight being lifted. My mental and emotional health were definitely challenged, especially during the uncertainty of what would happen to Summer.
‘’I remember one call in particular; they must have known intuitively the day after or just after this emergency operation and that I knew she’d gotten through it. I just started crying because I was happy that somebody checked in on me that day. I’m just very thankful for Redkite because I just feel like I’m very much alone without all this support and everything that they’ve been able to help us with. Even these small things.”
Doctors abandoned the last four rounds of interim maintenance, because of all the complications and Summer’s blood levels. She then faced two relapse scares over the next two months and a further month of waiting for one of the sensitive testing results to come through. Maintenance is going smoother, and those tests were good. The intense treatment phases lasted 16 months before Summer was finally put into maintenance.
Summer’s ambition is to become a primary school teacher, however, missing all of year 11 and only being able to do two subjects in year 12, Summer has a longer road than anticipated.
“I can’t put into words how grateful I am to Redkite. I would have felt so alone without their support. It really has made a dramatic difference to me and to Summer, because she is old enough to see and hear all the things that are going on.”