Living with Multiple Myeloma – Aamu’s story

January 15, 2025
Patient Stories

You don’t expect to have to wear nappies and learn to walk again when you’ve been successfully adulting for decades. And you don’t expect to follow that up with having to watch your 19-year-old learn to walk again either.

But that’s what happened to Aamu.

It all began with chronic back pain with no apparent cause. Then came tingles in her toes.

Should I worry?

“Should I worry?” Aamu asked her GP and got the reassuring answer we would all be hoping for: probably just a pinched nerve. It will get better with time.

Only it didn’t.

Aamu’s symptoms worsened over time, the tingles reaching her knees, then her waist, and then without any other warning she lost the use of her legs completely.

Aamu was rushed to hospital with lights blazing and sirens blaring, and a few hours later she underwent a six hour spinal surgery having a large tumour removed from her t10 vertebra.

The news after surgery wasn’t great. “We think you might have multiple myeloma, but we usually see that in older men, not women your age.”

Aamu was 37 years old and shocked to be receiving a blood cancer diagnosis. Treatment began with rounds of chemotherapy, then two weeks of radiation therapy, followed by an autologous bone marrow transplant.

Ten months off work – I ran the household from my bed!

“Gruelling,” is how Aamu describes that time in her life, and not just the treatment itself, but the long-term impact it has had on her family.

“I was off work for 10 months, but we still had to run a household and keep our two kids moving along and happy despite everything that was going on. And we still had to pay all the bills without the usual income coming in. It’s a lot to hold it all together. I had just started my career in early childhood education at the time of my diagnosis, so that was all put on hold. I wasn’t very mobile when I first came home either, so we had to put a bed in the loungeroom. I ran the house from that bed!”

Rehabilitation

The weeks and months after her spinal surgery and transplant saw Aamu needing to attend intensive rehabilitation sessions three times a week for two-hour sessions to help her learn to walk again. Eventually she progressed from using a walking frame in hospital, to a walking stick, and then finally to walking unaided again, but without full feeling in her feet.

“Sometimes I trip because of it, and I also can’t tell if I’ve hurt my feet. I’ve badly burned my feet on hot concrete in summer. I just don’t feel it. And I can’t feel a wet sensation either. I’ve been known to walk blood through the house after kicking my foot on something in the yard.”

After months of hard work, Aamu recovered from her transplant, and things slowly returned to normal, but it wasn’t to last. The family was just starting to get back onto an even keel when tragedy struck again.

Tragedy strikes again

Aamu with her certificate

Three years after her stem cell transplant, Aamu began to feel pain in her hip, which she had initially put down to tripping over while taking the dog for a walk, but the pain didn’t subside. In fact, it got progressively worse over time, and she was told she had relapsed and would need a second transplant.

The changes in her hip progressed quickly, and Aamu suddenly found herself unable to bare any weight, leaving her once again unable to walk. She was put on forced bed rest and spent 9 weeks on crutches while resuming active treatment of chemotherapy and radiation awaiting her second transplant.

“I had progressed in my career and was studying for my diploma in early childhood education and care at the time too,” Aamu explained, “and I thought I wouldn’t be able to graduate. But I just started running the house from that bed in the lounge room again and completed my diploma!”

Aware of what was in store for the family financially, Aamu and her husband worked as much as possible in the lead up to her second transplant, trying to put aside some extra money as a buffer for the months of reduced income that they knew were coming.

Tragedy was to hit them twice as hard this time round, though.

Just weeks before her second transplant, Aamu’s husband and son were involved in a horrific car accident. Brayden, Aamu’s teenage son, was rushed to hospital. He had lost all feeling from the waist down and needed immediate spinal surgery in an attempt to repair the damage to his spine.

It was an extremely difficult time. Right when her son was in hospital and needed her most, Aamu was about to undergo her second transplant and head into post-transplant isolation.

Initially Aamu and Brayden were in the same hospital, but before long Brayden was transferred to a specialist rehabilitation hospital and they couldn’t see each other.

“It’s OK, Mum. We’ll just facetime!” was Brayden’s response. Brayden was inspired by his mother’s strength saying “Well you learned to walk again, Mum. I’ll do it too.”

They would talk with each other every day, often comparing their hospital meals.

Brayden learning to walk again

The rehabilitation facility Brayden was eventually moved to was great for his recovery, but it made things tricky for Aamu’s husband to juggle visits. He would try to visit Brayden and then see Aamu. After that he would pick up Kelsey, their teenage daughter, from school and take her to hospital to see her brother and her mum. Then he would drop Kelsey to her grandparent’s house. Next, he would take food to the hospital for Aamu in an attempt to help keep her weight up after dreadful mucositis (with such bad diarrhoea that she ended up in nappies) had taken its toll.

After that he would go to work.

When he finished work at around 11 pm, he would pick up Kelsey and go home to bed, ready to repeat it all the next day.

It was exhausting, but together as a family they managed to get through.

Aamu and her husband at the hospital. Both are wearing hospital face masks and Aamu has a shaved head because of her treatment for multiple myeloma

You have two options: fall in a heap or make it work

“We bought a new car after the accident, and in that first year with all the driving back and forth between hospitals and to medical tests and follow up appointments, we’d put 33,000 kilometres on the clock. In one year! The help we received from Arrow with petrol vouchers made a huge difference to us with paying for all that additional travel,” Aamu said.

And this is exactly the reason our patient support program exists: to help people like Aamu and her family deal with all the additional costs that come from having a stem cell transplant

“I don’t know how we got through it,” Aamu says. “You have two options. You can fall in a heap, or you can make it work. I chose to just make it work. People think you just have your transplant and then everything goes back to normal, but it doesn’t. There are ongoing checks and tests and maintenance treatments month in and month out, and all that takes a lot of time and money. It’s not easy. But the help we received from Arrow really made a difference. It takes a village when your whole world comes crashing down around you, and Arrow was part of that village for us.”

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If you’d like to be part of someone’s village as they navigate the lengthy and gruelling stem cell transplant process, please donate to our patient support program. Donations over $2 are tax deductible, and will make a real difference in the day-to-day lives of people like Aamu.