AML: “It was a real rollercoaster” | Leukaemia Foundation

AML: “It was a real rollercoaster”

Clinton and his kids
“It doesn’t matter what disease you have – if you manage to get up in the morning you’re already miles in front.”

Clinton has lived by this mantra ever since his acute myeloid leukaemia (AML) diagnosis in February 2017.

The shocking diagnosis came after spending the 2016 Christmas period in a constant state of fatigue and breathlessness.

Clinton knew it wasn’t down to the excitement of a Santa visit or eating too much turkey, but something more sinister.

“I was out walking with my dad in January, and I said ‘sorry mate, I’m done’. And I just started vomiting and dropped to my knees. I had blood tests on the Tuesday. On the Wednesday my doctor told me it was leukaemia – I could tell he thought I didn’t have long when he told me the diagnosis. It just devastated us.”

A business owner based in a regional Queensland country town called Nebo, Clinton’s first thought was where do we stay when my treatment will be 1,200 kms from where we live?

The answer came when Leukaemia Foundation support staff visited the family in hospital offering help.

“We ended up staying at ESA Village for the next 8 months while I got treatment involving a heap of chemo and then the bone marrow transplant.”

“It was a real rollercoaster during that time, I almost didn’t go through with the transplant,” says Clinton.

“They said I had no chance without it but I just wasn’t willing to have my family put their lives on hold for me.”

It took blood cancer support staff Maryanne and Amanda (below, with Clinton) from the village to convince Clinton to go through with it.

“Maryanne said to me ‘they want to be there for you – so let them. You would do the same for them. Without those two girls I wouldn’t be here,” says Clinton.

Clinton with Leukaemia Foundation support staff

It’s only because of your help that Maryanne and Amanda can be there for people like Clinton, in their dark times of need. Clinton credits them, and you, with saving his life.

The family were able to head back home at the end of 2017 after Clinton completed his 100 days post-transplant.

“Being back home with my partner and two boys, Jaxon and Cruz, has just been awesome.

“I get to spend a lot of time with the little guy Cruz as he’s not at school yet which is lovely.

“The older of the two Jaxon was there when I had the transplant and stayed with me 14 hours a day during treatment. He comes to every blood test and just been my strength throughout the whole thing.

Clinton in hospital

“Every second Friday I will go have a blood test and check in with my doctor who keeps a very close eye on me.

“I take an anti-rejection transplant drug,” explains Clinton. “I’m slowly trying to wean myself off that though as it dampens your immune system so I’m often sick with a cold or flu.”

“The hardest part is dealing with your anxiety anytime you get a little bug like that. It’s probably just a common cold but it’s a very similar feeling to how I was leading up to my diagnosis.

“When I’m constantly breathless, puffing and having to stop for a rest I do worry it could be the leukaemia coming back.

“AML floods your body with white blood cells not allowing for the red blood cells, which carry the oxygen, to produce. So basically you’re being suffocated.

“I have had a lot of side effects from the chemo too. I have no feeling in my extremities, all my fingers are all pins and needles, and sometimes I’ll grab a glass and smash it because I grab it too hard or drop it because I don’t grab it hard enough.

“I can’t open bottle caps yet, I’m doing strengthening exercises to build up my strength again, because 9 months laying in a hospital bed does nothing for your muscles,” says Clinton.

Despite the challenges Clinton maintains a positive but realistic outlook for the future.

Clinton and his family

“You’ve got to keep in mind that 26% of people who go through a bone marrow transplant only make it to 5 years so the odds are still stacked against us.

“Every time I see my doctor I ask him how the research is going but he says the nature of AML makes the research really complex.

“I’m just hoping the progress they are making with the other strands of leukaemia will give us some answers.

“You have just got to keep thinking positive and don’t let your life be ruled by that fear of relapse, but enjoy the time you do have here with your loved ones.

“I don’t have a goal like wanting to be successful or earn a million dollars – I just want as much time as possible with my family and be able to be there for my kids.”

Posted on July 25th, 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.

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