Thursday 7^th November 2002 is a day Serina Dosen will never forget.

It’s the day she received her new stem cells, and a second chance at life.

But it’s also the day she began her “new normal” life, with a body that requires more care than most.

Serina is living with long-term GvHD.

“Looking after my body is definitely a full-time job. I have 15 conditions that I manage. It’s an everyday part of my life. But that’s OK, I have a really good life. I am still here and I do a lot with my life. It’s been 23 years and I am still alive. That’s amazing!” Serina said.

But let’s go back to the beginning

Serina was fit, healthy, and working full time. One day, in the middle of winter, she felt some unusual pain in her calf muscles as she walked to work. By the time she’d been at work a few hours, she felt so unwell that she needed to go home.

Thinking she might have been coming down with the flu, Serina stopped at her GP on her way home, where they did a routine blood test. That night, she received a phone call instructing her to go to Royal Perth Hospital first thing in the morning.

Serina arrived at the hospital to find a haematologist ready and waiting for her. More blood tests confirmed the diagnosis: Acute Myeloid Leukaemia (AML).

“It all happened so fast. It was really shocking. I didn’t even know what AML was. It was quite frightening,” Serina said.

Pre-transplant treatment

Months in hospital followed, with intravenous chemotherapy in an attempt to achieve remission prior to a stem cell transplant.

“The chemotherapy was intense. They gave me chemotherapy 24 hours a day for 7 days nonstop,” Serina said.

The chemotherapy took its toll, with all the common side effects such as hair loss (which has become permanent for Serina), but also some serious ones that put Serina into the intensive care unit.

Serina’s family were by her side each day and were preparing themselves for the possibility that she might not pull through.

“After 7 days my lungs filled up and I went to ICU. They put me on a CPAP machine for another 7 days. It was a pretty intense time and a hairy 7 days. My parents, sister and two brothers came in every day. They knew I might not live.”

Eventually, though, with a reduction in the intensity of the medication, Serina gradually regained her strength and got well enough to return to the bone marrow transplant ward.

“It was not an easy journey and was quite horrendous for myself and my family.” Serina recalls.

“I wasn’t able to eat. I was given nutritional supplements to assist in my recovery. Due to the chemotherapy, I couldn’t sense temperature. I had to touch food to see if it was hot. I burnt my mouth a couple of times while eating. When I had a shower, I would nearly faint as I was unable to sense if the temperature was too hot. These are things that would not normally affect me.”

After a week or so Serina gained enough strength to leave hospital and stay at her parents’ house where she rested and prepared for her bone marrow transplant.

The transplant and family support

Next came the transplant. Serina’s older sister and two younger brothers were tested early on in the process to see if they would be a match as bone marrow donors. Serina’s older sister and younger brother Antun both had a gut feel that they would be a match, and her youngest brother felt he would not be. The three siblings’ instincts were right, and in fact both Serina’s older sister and Antun were matches, but the doctors chose Antun, as her sister lived interstate.

Donating was not easy for Antun.

“Antun is two years younger than me and he has autism. He doesn’t like bright lights, hospitals or funny smells. We all sat with him when they took his cells. Antun wore sunglasses because he doesn’t like bright lights. He lay still for hours – which was very difficult for him.”

Antun did, however, successfully donate his stem cell cells, which were then transplanted into Serina, effectively re-booting her blood and immune system.

The process was relatively simple with Serina saying, “People think that donating your stem cells is excruciating and painful. It really isn’t. It is saving someone’s life. I don’t know what could be better than that!”

Serina’s family have remained a vital support throughout the process. “My family were just phenomenal. They came every single day to see me. My sister managed to arrange with her work to move temporarily from Melbourne to Perth and she stayed in Perth with a friend. She came every day in her lunch break and after work to sit with me. It was huge to have my older sister come every day to see me. Mum and Dad would visit every day too, while Dad was still trying to work.”

Even Antun, who doesn’t like lifts or confined spaces, made a daily trip to see her.

“My brother Antun suffers with claustrophobia and won’t go inside lifts but he would walk 10 flights of stairs every day just to see me.”

Daily life and the “new normal”

Serina’s life has certainly changed since her stem cell transplant and she has suffered some quite severe post-transplant issues with her digestive tract, gut and skin, which were eventually diagnosed as graft v. host disease (GvHD) after several flights interstate to Peter MacCallum Cancer Centre.

The GvHD was so severe that Serina had to have a total colectomy in 2017, and she now has an ileostomy. All In all, Serina has 15 ongoing health issues to deal with, requiring frequent specialist appointments and many medications, most of which have cost a lot of time and money.

“It’s really common to have ongoing health issues and it’s hard for people to understand. A lot of people don’t understand GvHD, what that is, how chronic it can be, and what it’s like living with it every day. There is not enough education on having a bone marrow transplant and the after effects. People’s faces go blank. Someone once said to me ‘how do they transplant all of your bones?’ They had no idea what a bone marrow transplant is. They actually thought that all of my bones were removed and replaced!

“I returned to work a year after my transplant and my boss said, ‘You are 100% now, you can come back to work full time. You’ve had a complete reset.’ What he didn’t understand was that when I got out of hospital I couldn’t walk, couldn’t eat, couldn’t stand. It has been a long and ongoing recovery.”

Financial Support and challenges

Since the transplant, Serina has not been able to return full time to work – although she still has a lot of skills and experience to offer and has even completed a degree at Murdoch University.

“Looking after my body is definitely a full-time job!” Serina jokes.

It has been a struggle financially dealing with the ongoing medical costs, all without being able to work. Serina has been fortunate to have her family’s help financially along the way but as a single woman, it has been particularly hard.

“It is difficult, especially if you are single. I don’t have a partner. I can’t share the load. Single people get cancer too!”

When asked how she has managed, Serina answered:

“Budget, budget, budget! You just have to. I don’t know what the other option is. Sometimes you just have to go without things.”

Whilst things have been tight, Serina did receive some financial relief a few years ago when she was put in touch with a social worker by her doctor.

“I am so grateful to my social worker, Giorgia from Fiona Stanley Hospital. Giorgia was able to approach some organisations on my behalf such as Arrow and as a result I received so much help.

“Only very recently I have received for the first time a medical exemption so that I don’t have to pay for my medications. Most of my medications are on the PBS, but sometimes there are antibiotics that are not listed and it can be $30 for 3 tablets. I now don’t have to worry about medication. It is such a relief…a BIG relief.”

The social work team from Royal Perth Hospital also put in an application for Serina to receive some support through the NDIS. Now, Serina receives daily support from two carers during the week.

“I have two lovely ladies who come to my home, and they’re so fantastic. They take me to hospital, the GP, shops and the dentist. They vacuum for me when I am unwell and need to rest. They do the shopping for me – I give them a list and they get it for me. They help me with cooking when I’m really sick. They take me to physio and to stretch classes. They take me to x-rays, scans and MRIs. They’re incredible. It helps ease the stress in managing what I need to, which is so much!”

Arrow’s help

Arrow has also supported Serina with help towards her daily living costs.

“Arrow has been incredible — I have received petrol vouchers and food vouchers. I am so incredibly grateful. It takes the weight off. When they told me over the phone that I was getting that support, I sighed out loud. It makes such a massive difference.

“And it’s not just the financial support that helps. It is lovely even having a conversation with Arrow Team members as they understand, and I am also sharing my knowledge. This makes me feel very valued as a person.

“When you have a bone marrow transplant a great deal of your dignity gets stripped away. For a while I just felt numb and discussion groups like your Transplant Tribe are so good. Having somewhere to talk with others gives you value once again, and recognition as a human being, not just a patient.”

Life now

Serina finished by saying:

“I have been through a lot of struggles with my physical health over the past 23 years and it does effect how I live my life. There have been a lot of unpleasant moments but I am grateful for what I have. I go to the beach, the movies, the library. I read. I have a coffee or brunch or a chat with friends. I still have great fun. I live a very good life.”

Serina is extremely grateful for the support she has received, and to everyone who has played a part in giving her a second chance at life.

 

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