From blood cancer to Blood Buddy
At 28, Amy (above, with husband Brett) was a healthy and outdoor-loving girl; a volunteer fire fighter who also competed in her local dressage championships.
But when a routine medical showed an irregular blood count, she was sent for a bone marrow biopsy.
A few days later, she received the devastating news that she had acute lymphoblastic leukaemia (ALL), a blood cancer that had already devastated her family once before.
Her younger brother was diagnosed with the same blood cancer when he was just five years old and endured years of chemotherapy before his remission. So it was no surprise that Amy’s first thoughts after her diagnosis were for those around her: “I kept thinking, ‘My poor family have to go through this again!’ It was a complete shock.”
Overnight, life became a whirlwind of hospital visits, tests, chemotherapy, and specialist appointments.
This is enough to exhaust anyone, but she was also feeling the side effects of chemotherapy – rapidly losing weight, feeling sick and lethargic, and losing her hair. It was also emotionally draining and “life basically became a day-to-day thing.”
Amy did her best to stay positive, but the eight months of chemotherapy were gruelling.
“A reaction to a certain type of chemo actually shut my liver down,” she said. “Then an allergic reaction started shutting everything down. They could have lost me.”
Her doctors tried to kill off enough cancer to prepare for a bone marrow transplant, but without success. After even more aggressive chemotherapy failed, she received the worst news imaginable. Nothing more could be done.
“They were ready to send me home on ‘maintenance chemo’, just to live out the rest of my days. There wasn’t anything more they could do.”
Before giving up all hope, her doctor suggested Amy join a clinical trial he’d found in Germany. As he said to her: “This might be your only chance”.
The trip was expensive and exhausting, but the trial worked. Amy came home ready for her life-saving bone marrow transplant.
But Amy remembers this as the most gruelling treatment of all.
“With the transplant treatment, there’s enough toxicity and radiation to kill your bone marrow,” she said. “I don’t think I ever felt as sick as I did after the transplant.”
Fortunately, Amy is now in remission and doing well. That clinical trial saved her life.
Amy is now a volunteer with the Leukaemia Foundation’s Blood Buddies program, a phone-based peer support program that matches people when they are newly diagnosed to volunteers who have had blood cancer themselves.
Amy was connected to Christina Kaepplinger soon after the program began in mid-2015 – they were the first Blood Buddies match.
“The psychologist at my hospital knew I wasn’t in the happiest place and put the Leukaemia Foundation in contact with me,” said Christina, 26, of Sydney. “When the Foundation called I thought it wouldn’t hurt to talk to someone who would understand, better than my family and friends, what I was going through.
“It helped to hear from someone in the same position. It was on a day when I was so depressed. I couldn’t control how I felt.
“To find someone my age was really amazing. All the other (ALL) patients were a lot older than me, or young kids.
“Before speaking to Amy, I didn’t believe my life would go back to ‘normal’, but now I believe it will,” said Christina.
“It made me feel like I was quite normal. Even though my cancer was severe, for her it was a lot worse. I didn’t have to stay in hospital for eight months straight as she had. I realised it could have been worse for me, which put it in perspective.”
Amy said the training to be a Blood Buddy gave her the opportunity to understand the need for boundaries, about what parts of her story she would tell, not offering information about medicines, doctors or treatments, and making sure she had a script in place if someone asked me those questions.
“There are things that you don’t feel you can talk about with your family because it worries them,” she said. “You feel a lot of guilt about what you are putting your family through.
“And I found from my experience, there are conversations only patients can have together and that would only be understood by another patient, such as about your body and how it functions, and putting modesty aside to tell doctors and nurses what you need them to know, otherwise they don’t know how to help.
“It’s almost an honour to be someone who can help in such a dire situation. And it helped me because it means everything I went through wasn’t in vain.
“I think Blood Buddies is a tremendous program and I give the Foundation a huge thumbs-up for such a positive initiative.”
The Leukaemia Foundation now has more than 110 registered Blood Buddies. To register your interest too, or to be matched with a Buddy, please email email@example.com or call 1800 007 343.Posted on January 3rd, 2018
Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.