News Type: Patient stories

Tori with her portacath during treatment

 

Last year, when Christchurch resident Tori was just 17 years old she developed a sore neck, little did she know the path that lay ahead:

“After a couple of weeks when it didn’t get better I went to the doctor – she tried a few things but nothing helped. I was starting to worry because I could feel lumps in my neck so I requested a different doctor. He felt my neck and straight away rang the hospital specialist – they recommended an ultrasound.”

 The ultrasound showed that Tori’s lymph nodes were enlarged, she was referred for a biopsy:

“When the doctor told me I had Hodgkin lymphoma it didn’t feel real. Mum was working on the West Coast at the time but came back to Christchurch to be with me –that’s when it dawned on me that it was serious.”

Tori was referred to LBC and Matt Eby, one of the Support Services team got in touch. Matt was able to answer all Tori’s questions and provided booklets and information that she was able to share with her family. As she explains:

“It was easier to talk to Matt about my cancer because I didn’t have to worry about his feelings like with family. I knew what he told me was reliable and specifically made for people like me.”

 Tori embarked on six months of chemo – it was tough. At times she felt unwell but was determined to continue working in her hospitality job:

“The more chemo I had, the worse I felt. I got about half-way through and felt so rubbish I had to cut my hours down – my boss said I could build them up again when I was feeling better … then COVID hit and I lost my job!”

LBC was able to provide Tori with practical help like taxi vouchers for going to and from appointments and grocery vouchers so she could buy healthy food. After treatment finished she had a scan during Level 4 lockdown restrictions – it was tough as she had to go by herself whilst her mum waited in the car. It was a nervous wait for the results:

“Because of COVID I had to get my results by video chat which felt weird. When the doctor told me I was in remission I was shocked… it didn’t feel real.”

Tori continues to be in remission and, inspired by her cancer journey, has started studying towards a Bachelor of Medical Imaging. She really appreciates the support she received – made possible by donations:

“I want to say thank you to all the people who donate to LBC – it’s a great thing you are doing and it definitely helped me a lot when I was struggling.”

Maia, Meredith, Bella & Anthony enjoying family time.

 

LBC not only supports patients and families going through blood cancer, but also those facing a myriad of other debilitating blood conditions such as aplastic anaemia, sickle cell anaemia and thalassaemia.

Dad of two Anthony McQuoid has been living with his blood condition all his life.

As a young child Anthony experienced severe anaemia – but doctors weren’t able to identify the cause. It was only later, after multiple tests and ongoing transfusions that Anthony was told he had a blood condition called Haemoglobin Volga. As Anthony’s wife Meredith explains:

“It’s a very rare, chronic condition which means Anthony’s blood can’t carry enough oxygen around his body, he’s the only person in Australasia to have it which has made it especially hard to deal with.”

Anthony’s condition damaged some of the small blood vessels in his body – this affected blood flow to his brain. Four years ago, at the age of just 38, he started to experience multiple strokes and had to have urgent brain surgery to re-route blood flow to parts of his brain. It was a very difficult time for the whole family, as Meredith explains:

“Anthony being so ill was especially hard on Maia because she was that little bit older, she knew more about what was going on – it was a really scary time for all of us.”

Thankfully Anthony made it through his brain surgery but it has left him with lasting side effects, in addition, his condition means he is on a relentless cycle of treatment every six weeks where has to go into hospital to receive a transfusion of red blood cells, as he explains:

“I get hooked up to the machine on the Friday and it takes me until Sunday to recover and then by Monday I am feeling OK again. By the fourth week I start going downhill and it gets a struggle – by week six I’m hanging out for the treatment and the cycle begins again.”

Anthony’s condition has been hard on the whole family – a few years ago things started to get really tough so Meredith got in touch with LBC:

“We are so grateful for the support we receive from LBC – especially for Bella and Maia. LBC helps families with lots of different things like getting to appointments, parking at hospital or food vouchers…plus emotional support which for us was the most important thing. LBC’s Kids Club really helps our girls – we have had a couple of really tough years and LBC have been able to make it a bit easier for us.”

The support that helps families like the McQuoids is not funded by the Government but by thousands of warm-hearted Kiwis – thank you to everyone who chooses to help.

 

Fast Facts:

Haemoglobin Volga

• A very rare blood condition affecting haemoglobin
• Symptoms include severe anaemia and damage to small blood vessels
• Haemoglobin is a protein molecule in red blood cells that carries oxygen from the lungs to the body’s tissues and returns carbon dioxide from the tissues back to the lungs

Kerr Stubbing from Hamilton knew something wasn’t quite right.  The normally fit and energetic 23-year-old lost weight and suddenly felt exhausted all the time.  Even simple everyday tasks became an uphill battle.

“I could see Kerr was worn out and not coping. I became even more concerned when his skin took on a pale white glow, so I booked a doctor’s appointment” says Sam, his mother.

Little did Sam know, this appointment would change the course of her son’s life.

“Within 24 hours of receiving blood test results, Kerr was in Waikato hospital having a blood transfusion and on a drip to stop his kidneys from shutting down.”

He stayed at the hospital for a week of rigorous testing. Eventually, doctors broke the news that Kerr had myeloma. Sam still remembers that moment like it was yesterday.

“It was surreal, like a slow-motion movie and I kept thinking this can’t be real.  I felt overwhelmed and in shock.”

Kerr’s diagnosis was unusual because myeloma is normally diagnosed in people over 50. He is the youngest person in New Zealand living with this form of blood cancer.  Chemotherapy started immediately, then Kerr explains how he received another surprise.

“A new tumour appeared on my spine impacting the nerves in my foot, causing drop-foot. I had to get used to using crutches during outings and sometimes around the house,” explains Kerr.

Chemotherapy, radiation, and a stem cell transplant occurred during the next two years. So did the roller coaster of emotions experienced by Kerr and his family.  Sam reached out to Leukaemia & Blood Cancer New Zealand (LBC) for help.

“We read the LBC myeloma medical booklet, which helped us to understand Kerr’s illness.  It was written in simple language, so it was easy to read. It was a relief to know I did nothing wrong as a parent. Myeloma is made in the bone marrow and it doesn’t discriminate who it targets. We attended support groups and Kerr’s brother was lucky enough to go to the LBC Kids Club which he loved”.

Sam had some words of wisdom for Kerr that will ring true for so many other patients living with myeloma.

“One of the biggest lessons was for Kerr to listen to his body.  This means being mindful of any changes. It also means understanding his coping levels, he can’t do the long hours like he used to”.

Thankfully Kerr has defied the odds and gone into remission. Sam admits it has taken two years for them both to come to terms with his diagnosis. They marked the occasion with something extra special that would last a lifetime and signify new hope.

“We got matching tattoos of a turtle wearing a burgundy myeloma ribbon. They were symbolic of our journey and represented healing and being at peace with the diagnosis.  We have finally accepted our new normal and are feeling positive about the future.”

 

 

When Kerry Bisley struggled to make his morning walk to the letterbox, just 40 meters up the driveway, he knew something wasn’t quite right. It was normally an easy stroll, but today it felt like he was carrying the weight of the world on his shoulders.

“For the next 18 months, I was tired and sweating profusely. There was intense pain in my spine and I was bedridden for days with simple ailments.  I knew that my body was out of sorts. Then the hospital x-rayed me looking for kidney stones.”

Kerry’s scan revealed something more sinister. When his GP broke the news he had lesions on his spine from multiple myeloma, it was a day he will always remember.

“Afterwards, I sat in the car for two hours, wondering how I would pay the mortgage and how I would put food on the table. And most importantly, how I would tell my wife and daughter.”

As it turns out, Kerry didn’t need to worry about explaining myeloma to his loved ones. A phone call to Leukaemia & Blood Cancer New Zealand (LBC) meant help was at hand.

“It was a relief to see Amanda from LBC arrive at my door that night. She explained in simple terms the treatment pathway and different types of support offered. She answered our questions and handed over a myeloma DVD and booklet for reference.

Kerry’s cancer journey was a roller coaster for the next few years.  He had many cycles of chemotherapy and two stem cell transplants which clocked up an intense 52 weeks of treatment.

“My humour gets me through tough times. I remember the haemotologist explaining the process for a transplant operation.  When asked if I had any questions. I replied ‘can I take my coffee machine into hospital?’ He asked my wife if I was taking my cancer seriously enough.”

Kerry didn’t realise it at the time, but coffee would become a reoccurring theme in his life.

“I quit my high-flying, 36-year career as a chef. Sold the house in Hamilton and moved to Otorohanga. It was a lifestyle change so I could focus on my health without mortgage and career stress.  I created a coffee cart business which gave me flexible hours to manage fatigue”.

After the move, Kerry and his family have never looked back. A big personality in a small town, he generated a loyal following for his spectacular coffee brew at Stand Easy with a dash of witty banter.

Kerry’s coffee cart transformed into a popular rendezvous for locals.  His charming personality and wise counsel means he provides more than just coffee as a community service.

“People gravitate to me for advice, and the roadside cart feels more like a makeshift consultancy. I’m the local barista, marriage counsellor, farm consultant, employment agent and confessional. Someone suggested I write a book with anonymous characters called ‘Confessions at my Coffee Cart’.  But I’d never do that!”

Kerry and his family maintained a connection with LBC attending support groups and the LBC Blood Cancer Patient Forum conference. It was an opportunity to connect with others in the same boat, learn about managing myeloma and understand the latest research and developments in the fast-moving field of blood cancer.

“I’ve been in remission for two and a half years. Humour is my secret weapon for battling illness. I take the mickey out of myself first.  If you don’t laugh about things, they will consume you. People take life too seriously and sweat the small stuff.  I remember when the doctor diagnosed me with myeloma– I replied with a knowing smile ‘you can’t kill gorse with weed killer’…..and I was right!”

At the end of June, Gregory Ah-Kuoi got a cold he could not get rid of.
His health deteriorated quickly, and soon he was struggling just to tie his shoelaces.
Then, a month ago and aged just 13, he was given a shock diagnosis. He had pre-B acute lymphoblastic leukaemia.

Each year 50 Kiwi kids are diagnosed with leukaemia – the most common form of cancer in children. While many of them beat the disease, the treatment is long and challenging. In Gregory’s words, he is going to kick leukaemia in the butt.

His parents, Tai and Salamanaia Ah-Kuoi, don’t doubt it.
“I think he will and pray that he does. I think he will just come out stronger and better than before this. He’s going to beat it. He thinks he will,” his mother, Salamanaia Ah-Kuoi, said.

Two months ago, Gregory, a Year 8 student at King’s School, was a strong, healthy rugby forward.
At the end of June, he got a boil on his thigh and then the persistent cold. He went to the doctors both times and was given antibiotics, but if anything he got worse.
He was pale, lost his appetite and even the smallest of tasks like tying his shoelaces or opening the front gate wore him out.

“He’s a big, solid kid,” Salamanaia said. “He’s taller than me. He’s really healthy. There have been no health complications with him. He’s not on any medication. It was just weird how it all progressed really quickly from a cold to being so pale to not eating. He had no problems before that.”
On July 2, he couldn’t even get out of bed and – totally out of character for him – told his mum he didn’t want to go to school.

They returned to the doctors for the third time in 11 days and blood tests revealed within a few hours that his blood count was only 50, half of what an average person’s is.
They were told to go straight to Middlemore Hospital and on arrival, he was rushed into quarantine in a wheelchair. “He was just so tired. He could barely walk. His energy levels were dropping dramatically,” his mother said.
After blood transfusions and a bone-marrow procedure – which confirmed the cancer – he was given chemotherapy the next day and has had six rounds so far.

Doctors have told Gregory the treatment will take 3 years and he cannot go back to school for the first nine months while his immune system is still low.
For the first month it meant he also couldn’t attend church or go to the movies, but he’s slowly being allowed to do more of those things providing he goes mid-week when it is not busy and he wears a mask.

Leukaemia & Blood Cancer NZ head of support services Emma Barker said the improvements in diagnosing and treating acute lymphoblastic leukaemia meant the majority of children with it went into remission and most would be cured.

However, Barker said the treatment was long and there were some side effects from chemotherapy. Some families often had to relocate to be near main hospitals for treatment and long periods away from friends and whanau could be challenging.

Gregory won an academic scholarship to King’s School in Remuera last year when he started in 2017 which will take him right through to college.
“He’s a bright kid,” his mother said. “He does really well. I think he sets his standards really high. He likes to do well.”
He will continue his schooling from home and through the Northern Health School based at Starship. He’s already surprised the teacher by choosing to do two subjects.
“He’s so strong. I sometimes forget he has what he has.”

By Nikki Preston
NZ Herald

Colleen Taylor was diagnosed with multiple myeloma on the day of her partner Julie’s graduation.

“I was receiving treatment for osteoporosis, when I had a fall and fractured my sternum” said Colleen. “I asked my doctor if that meant that my medication wasn’t working, and she ran some blood tests to see if there were any underlying problems”.

“We were in Auckland for Julie’s graduation when I took the call. I decided to wait until the next day to tell Julie, as I didn’t want anything to spoil her special day – she had worked so hard for it”

Myeloma (also known as multiple myeloma or plasma cell myeloma) is a cancer of the plasma cells that usually arise in the bone marrow. In the early stages there may be no symptoms, and myeloma may be detected by coincidence during a routine blood test, as was the case with Colleen.

“My GP told me that while there was no cure for myeloma, there are treatments that can help with the progression of the disease” said Colleen.

“When Colleen told me that she had blood cancer there was a lot of crying” said partner Julie. “Living in a rural area, we felt very isolated, and got in touch with LBC to register for local support groups and connect with others going through something similar”.

Colleen’s treatment included chemotherapy and a stem cell transplant. It was during her course of chemotherapy that Colleen began to lose her hair. In solidarity, Julie organised a Shave for a Cure event with colleagues at the school where she is a teacher, in December 2015.

“Even though you are there with your loved one on their cancer journey, sometimes you can feel so useless,” said Julie. “You try to act normal, but it’s so hard knowing that there is nothing that you can do to make them well again”

“Knowing there was nothing I could do about Colleen’s actual illness, I wanted to raise awareness and fundraise for LBC to make sure that their services are there for everyone who needs them. It’s also important to me that funding is available for research into better treatments and even a cure one day”

Colleen and Julie kindly shared their story, and Julie ‘braved the shave’ once again to help raise awareness for Shave for a Cure 2019.

Find out more about Shave for a Cure at http://www.shaveforacure.co.nz

As a scientist, Ian Laban is familiar with the processes involved in laboratory testing, but in early 2016 he had no idea that he would soon be the one supplying samples for evaluation.

Injuring his back after lifting a heavy box of books, Ian went to the doctor for painkillers. He was more concerned about catching his planned flight to Australia for a business trip than his back.

Still in pain on his return to New Zealand, Ian saw his doctor again, who sent him to the physio. With no improvement, Ian went to a back specialist and had an MRI. It was a blood test that brought the definitive diagnosis of multiple myeloma. The myeloma had softened Ian’s bones; fracturing four vertebrae.

“All of a sudden, I couldn’t walk. I was on my back for three months in hospital while they put me on chemotherapy, waiting for my back to heal,” says Ian.

During those first few months, Ian says he and his family were in shock.

“For the first month, I couldn’t say the word ‘cancer’. I wasn’t sure what was going to happen. Our whole world was turned upside down. It took a while to work through.

“Once you accept it, you can move on – upward and forward.”

His family were with him every step of the way.

“My wife really helped me. I was like a baby for the first year. She organised time off work. My daughter was overseas and she came back to help.”

After his back healed, he continued to undergo several cycles of chemotherapy. After a year, he had a stem cell transplant, which took another six months to fully recover from.

During that time, Ian wasn’t working. However, the scientist in him was still seeking answers and very much wanted to understand as much as possible about his disease and its treatment.

“I was very interested every time they took my blood or a sample. I’d ask which lab was doing the testing.”

Ian would challenge his consultant about what certain tests were or weren’t being done.

“We’d have a debate. I had a very good consultant who guided me. Although I have a scientific background, he was the specialist.”

Looking to help future generations, Ian doesn’t mind being a guinea pig for research.

“I want my doctor to poke needles into me to find out everything about me, to find out which part of my DNA is causing the cancer.”

For Ian, it’s comforting and reassuring to understand exactly what is going on.

“When you don’t understand, it can be difficult to get through the challenging times. It makes it easier, and gives me peace of mind to have that extra knowledge.”

In May 2017, Ian returned to work feeling grateful that his employer had kept his job open for him. But he knows it’s important to continue to monitor his condition.

“I’ve been off chemotherapy ever since. I have blood tests every three months. Unfortunately it’s the type of disease that comes and goes. At some point, I will need another round of treatment.”

Ian continues to take every opportunity to learn more, including attending LBC’s Blood Cancer Patient Forum last year and replaying the talks on YouTube.

“It was fantastic. The conference gave me hope. Specialists discussed their work, which is leading the way in cancer research. I enjoyed the discussions about what was being done to improve our quality of life and the great improvements in working to find a cure.”

Ian also enjoys attending the LBC myeloma group meetings once every two months to see how everyone is doing and share their experiences.

“What I’ve gained from the group is that although we all have the same disease, not every medication is going to work because our individual makeup is different. What works for me, might not work for the person sitting next to me.”

Another piece of advice from fellow patients that Ian took seriously was spending more time with family.

“When attending groups, people encourage you to do as much as you can with family because it can get tougher later on.”

Ian has recently returned from a holiday in Samoa, where he has extended family.

“Family is priority now. I enjoy work but I don’t stress. I’m not rushing. I’m more relaxed.”

For now, Ian is planning more travel with family, working on an extension to the house, walking and even fitting in a friendly game of tennis.

Russell Cole suffered four years of pain, particularly in his back, before his sister told him he had to find out what was wrong.

Russell, who was 53 at the time, had been to the same GP for many years and although he felt loyal to him, he decided to see another GP who knew straight away that something was seriously wrong.

“The new doctor said that he thought I might have myeloma, and after I had blood tests, my specialist confirmed this,” says Russell.

Russell’s specialist helped him understand every treatment option available to him and although he knew he was facing a challenge, the positivity of his specialist put Russell’s nerves at ease.

“I had never heard of myeloma or blood cancer so I just had to believe it was all in the hands of my health professionals and they would do what was best for me,” says Russell.

Russell decided he would not be the type of person who sat around and dwelled on his diagnosis or ‘what ifs’ and instead focused on the challenge ahead with positivity and a belief in himself and his health professionals.

“I don’t have a bucket list, but I did set myself a goal of making it to my great niece’s 21st birthday who was three at the time. So I just need to make it to the age of 77,” says Russell.

From the day he was diagnosed, Russell said his sister told him she would be there for him, and she was true to her word. Through 21 days of radiation, 36 weeks of chemotherapy, weekly blood tests and many more appointments she was there by his side and never missed one appointment.

“I’m very lucky for the family support that I had and especially for my sister. She gave up work to care for me, drove me everywhere and pulled my head in whenever I needed it,” says Russell.

Four days into his stem cell transplant, side effects from the treatment set in, and he ended up in hospital for three weeks.

“I really did think it would be a piece of cake then it all hit me, and I was in 24-hour care. Thankfully, the nurses in the haematology ward were fantastic; caring for me through the worst of the treatment.

“I suffered quite badly from ear pain, chest issues and I lost feeling in my feet, but I put it into perspective and told myself if that was all I had to deal with then I had nothing to really worry about,” says Russell.

When Russell underwent a stem cell transplant, both his sisters were there to support him and help him take in all the information he needed to know.

“Right before my stem cell transplant, I met an 11-year-old girl in the hospital who was battling cancer too. Just before I went to leave she looked at me and said ‘Mister, you’re going to be okay’.

“I didn’t even get her name but she said it with such confidence that I believed I would be okay,” say Russell.

When Russell got in touch with Rochelle Mills, the Auckland LBC Support Services Coordinator, he was at first dubious about attending support groups.

“When Rochelle invited me to an LBC support group I was very honest with her and I told her how I had taken a very positive outlook and I was nervous the group would focus on the negatives of blood cancer.

“A soon as I got there, I felt the positivity. There was no moping and no talk of sickness, and I met others who had lived with myeloma for 20 years which was really inspiring,” says Russell.

Russell looks back at his diagnosis and the years that have followed, and he sees how it has changed him for the better.

“I thought to myself here’s me with a bit of cancer, but who cares when I’ve got a great family support system around me.

“I’m a much stronger person because of my diagnosis, and I know I’m one of the lucky ones!”

In 2015, Whakataerangi (Tae) Mason thought she was a little run down, but the cows on her dairy farm knew something was very wrong with her.

Born and raised in Rotorua, Tae had spent the last 17 years working as a dairy farmer with her husband. No stranger to hard physical work, Tae didn’t let a severe toothache and fatigue slow her down. She had got antibiotics from the dentist, but refused to see a doctor even though her toothache persisted and her husband was insistent.

Then one morning in the milking shed, she found herself without the strength to walk. Her husband took her to their doctor and, at his recommendation, onto Taupo Hospital Emergency Department.

When the emergency doctor saw the dark bruises all over her body, he asked her husband to leave the room before asking her what happened.

“I explained to him that over the past two to three weeks, the pregnant cows were kicking me every opportunity they got,” says Tae.

“After examining me, he said, ‘Tae, I believe you’. He ordered a full set of tests and asked my husband to come back; telling him, ‘you either have very evil or very intuitive cows.’”

By the evening of the same day, Tae was in Waikato Hospital receiving her first round of chemotherapy for acute myeloid leukaemia (AML).

Three rounds of chemotherapy in as many months slowed down the AML, but only a stem cell transplant could offer a cure. Referred to a consultant at Auckland Hospital, Tae needed to find a suitable donor. Her youngest brother was the closest match, but not perfect and there was a chance of complications. As a family, they decided it was worth the risk.

On Waitangi Weekend, Tae was admitted to Auckland Hospital and woke the next morning with a serious infection. To everyone’s surprise, investigations revealed that Tae had been born with only one kidney.

This placed her transplant in jeopardy because of the strain it would place on her sole kidney. Her consultant in Auckland wanted to know more about Tae to help make the decision. It was her husband that offered his insights on Tae.

“My husband told her that I had been a dairy farmer for many years and never had a work day off. He said, ‘every year she calves a thousand cows, and picks up 500 calves during calving season, feeds and raises 500 calves every year, and she’s built like a brick house’.

“At that point the consultant looked at us both, smiled and said, ‘OK you two, we’re going to do this. Tae, you be ready for a rough ride.’”

Three months after her transplant in February 2016, Tae was up and running around, but then the complications hit.

“I caught every bug known to man. I was being given blood transfusions every week. I was a day stay patient every second day, using between one and two units of whole blood weekly.”

Two and a half years have passed and Tae now goes to see her specialist once a month.

“That will change to once every three months, then to six months and then once a year for reviews,” says Tae.

“I have no sign of AML. I have weaned off most of my medication, and I’m not far away from starting my immunisation programme, mumps, measles, rubella, and so on. Just like a baby.”

Her husband as her primary caregiver was in her corner all the way, says Tae.

“If you don’t have a caregiver who understands what is going on with you, you can become your own worst enemy. It’s important your caregiver perseveres and acts on your behalf when you can’t,” says Tae.

Tae is grateful for the support and information that LBC gave to her and her husband, helping with transport, food vouchers, information and counselling.

Their LBC support services coordinator is now regarded as one of the family.

“Matt was excellent in giving my husband the tools to explain to friends and family about my condition. He taught him all the one liners, such as ‘it’s like when production breaks down in a factory.’ Before you knew it, everyone was an AML doctor,” says Tae with a laugh.

“Matt was also someone to talk to, and he introduced us to people who had gone or were going on a similar journey to us. In short, his support has meant that I have met lots of people who have turned into dear friends.”

Moving forward, Tae wants only to be healthy, happy and give back wherever she can.