Patient Story Type: Lymphoma

In 2007, Paul Left visited his GP about a small lump under his chin. Paul didn’t see or feel any other signs that he was unwell, so when a needle biopsy came back showing large diffuse B cell lymphoma, he was shocked.

“After a CT scan and bone marrow biopsy, I was diagnosed with stage four lymphoma. It was aggressive and widespread, and I needed treatment. From there, everything happened fairly quickly,” says Paul.

Paul went through six courses of a chemotherapy treatment called R-CHOP which went well, although there were delays because his white cell count was too low at times. He spent a few days in hospital with an infection during the treatment. A follow-up CT scan showed a good response to the chemotherapy, and he was optimistic.

Three years later, Paul’s doctor found another lump in his chest cavity. After a series of biopsies and a chest operation, he was diagnosed with indolent follicular lymphoma.
“The bad news this time around was that I was told indolent lymphoma is a chronic disease. It was slow growing, but incurable,” says Paul.

After a month-long series of daily radiotherapy sessions, a CT scan showed the tumour had responded well. Paul went back to regular check-ups with his doctor to monitor his condition.

Five years later in 2015, Paul’s doctor ordered follow-up scans and biopsies, which showed the tumour had grown again, and the lymphoma had spread to his lymph nodes.

“I went back into treatment, and this time I underwent six courses of a different chemotherapy treatment called R-CVP,” says Paul.

Towards the end of treatment, Paul’s medical team recommended he then have an autologous stem cell transplant.

“To be honest, it was a very hard decision. I was told the transplant wouldn’t cure the lymphoma, but could give me a greater time in remission. I also knew there were risks involved, and I felt physically exhausted after six months of chemotherapy.”

A friend put him in touch with someone who had gone through a stem cell transplant, which helped him weigh up all his options.

“She was fantastic because she didn’t gloss over the bad bits and was positive, but realistic about what to expect. This was very helpful!”

Deciding to go through with the process, he spent three weeks in Auckland City Hospital in April 2016 having the transplant.

“I thought I’d managed my previous treatments quite well, but I found the transplant really gruelling. I was impatient to feel well again, and I felt like the recovery progress was frustratingly slow,” says Paul.

“Exercise was difficult at first, but gradually my strength and fitness returned.”

“My partner Caroline took five weeks off work to care for me while I was in hospital and afterwards. It was a difficult time for both of us, but she was very supportive through it all,” says Paul. “And the staff at the Haematology Unit were very professional throughout the process.

“I’m also really grateful to LBC – I’ve found their visiting speakers really interesting, and Support Services Coordinator Tim has been a great support at times when I needed to make treatment decisions.”

Eighteen months on, Paul is able to see the huge amount of progress he has made and is happy to be feeling well again.

“I’m enjoying time with my friends and family, and I’m even able to run around after my two grandsons when they come to stay. My work has now taken a back seat, and I’m more interested in pursuing my interests: playing guitar and bass in several musical groups, bush walks and reading.

“I’m looking forward to more travel too now that I’m feeling up to it. I’m very grateful to have this extra time at this stage of my life!”

In 2009, Sonja White found herself dealing with enlarged lymph nodes all over her body. For 18 months, she went back and forth to her doctor who thought her lymph nodes were enlarged due to the constant infections she seemed to be having.

While seeing another doctor for an unrelated issue, Sonja pushed to find out more information about the lumps continually popping up.

After visiting a specialist and undergoing a bone marrow biopsy, Sonja was finally diagnosed with Non Hodgkin follicular lymphoma.

“Looking back, I realised I had been losing energy and the lumps were starting to get uncomfortable, but other than that I wouldn’t have known anything was wrong,” says Sonja.

Sonja was told she did not need treatment straight away, so she was placed on active monitoring. She underwent tests every three months.

“I didn’t actually tell anyone when I got the first diagnosis because there really didn’t seem any point when I wasn’t in treatment yet, and I was still working as normal,” says Sonja.

After monitoring her condition for 18 months, Sonja started treatment at Palmerston North Hospital. Every few weeks Sonja had treatment and says it was a sobering experience seeing others at different stages and watching the lovely nurses running around looking after everyone.

Sonja took leave from her job as a teacher to have her treatment and would sit in bed doing school reports and files trying to keep up with everything, but eventually she knew she couldn’t manage it.

“I didn’t want to leave work, but I just ended up with no energy so my lovely class had a relief teacher for the last two school terms of the year,” says Sonja.

Treatment went well and Sonja was eventually in remission, but she knew there was a chance she could relapse. Twenty months down the track, Sonja became unwell again. She was told her cancer was back, and tumours were growing in her abdomen. After nine weeks of one treatment, Sonja’s body didn’t respond well so she was given a different treatment.

After the second treatment, Sonja underwent a stem cell transplant which she says was a fascinating process, although it was not a great experience to go through.

“A friend of mine had a stem cell transplant so I had some knowledge going in to it which helped, but I still think the treatment is worse than the disease itself.” says Sonja.

“I lost 14 kilograms, all my hair and was a pale imitation of myself,” says Sonja.

Initially the stem cells refused to take hold and grow but after four months, and just in time for her daughter’s wedding, things progressed and Sonja felt herself getting stronger with the support of her husband David and her family and friends.

“David is a stoic, practical man and he ran around and did everything while I was recovering, while he was working full time,” says Sonja.

“I think it must be very hard for partners who go through this journey. I’m sure he was worried, but being practical was his way of handling things,” says Sonja.

After attending general cancer support groups, Sonja found it hard to find others who were also diagnosed with a blood cancer until she got in touch with Leukaemia & Blood Cancer New Zealand (LBC).

“When I attended my first LBC support group in Palmerston North, I walked in and the whole room was just buzzing! Then I was so pleased to find two other woman with the same blood cancer as me, and it was so great to know I could talk to them.”

Sonja decided not to go back to work full time and instead she spends her time volunteering at a local school, tutoring at a local adult literacy programme and cuddling her new granddaughter.

Throughout her treatment and recovery, Sonja met many different people on their own journeys and says there were others without family or transport or support like hers.

“I can’t complain because there are so many others going through tough life situations too,” says Sonja.

“Life still goes on no matter what you are dealing with, and you just have to go with the flow.”

Naomi McRae had never even heard of LBC until she unexpectedly was diagnosed with Hodgkin lymphoma just before her 30th birthday in 2010.

“LBC’s Auckland Support Services Coordinator at the time got in touch with me to see how I was going and that’s where my relationship with LBC all started!,” says Naomi.

Having an LBC Support Services Coordinator popping up to the ward or day stay to say hi, drop off magazines and just having someone to talk to who understood what she was going through made all the difference for Naomi, while she was in treatment.

Naomi received the incredible news that she was in remission in August 2011 and she decided to commit to running a marathon to fundraise for LBC and give something back. Her plans were derailed when she started feeling nauseous and thought she was unwell again only to be told that astonishingly she was pregnant. This came as a shock to everyone since Naomi had been told it would be unlikely she would ever be able to have children due to her treatment.

Naomi’s son Lauchlan was born in 2012 and not long after, her second son Owen was born.

Receiving a diagnosis of blood cancer is life changing and for Naomi, it meant she thought a lot about her values and what was important to her. These thoughts led her to a job change within PwC moving from HR into the PwC Foundation where LBC is one of the core charity partners.

This career change saw Naomi learn a lot more about what LBC does and the many ways they are able to support patients and she began to think how she could offer her own support.

“PwC were amazing when I was receiving treatment and I was able to go back to work and do what I felt comfortable with, however I always knew that many other patients were not in as fortunate situations,” says Naomi.

Naomi saw a gap where she could use not only her career knowledge and expertise but also her experience of being a patient to develop information and resources about employment and legal rights for patients dealing with employment situations due to their condition.

Naomi formed a small team of PwC employees and together they developed the ‘Work it out’ programme which covers everything from talking to your employer about your diagnosis through to looking for work after treatment.Naomi then presented this information in workshops at LBC support groups around the country and also at the 2017 Blood Cancer Patient Forum.

When LBC’s first Consumer Advisory Board was formed in 2017, Naomi was asked to join to contribute her unique perspective to LBC’s strategic planning alongside other patients and carers.

“Being on the Consumer Advisory Board has been so eye opening for me. I’ve been able to get a real insight into the challenges LBC faces and it’s been great to be able to give my recommendations to LBC to help them continue to improve and develop their resources,” says Naomi.

While developing the ‘Work it out’ Programme and being involved with the Consumer Advisory Board,  Naomi decided to tackle the 1103 steps of the Sky Tower for the Step Up Sky Tower Stair Challenge and raise as much money as she could for LBC with a team from PwC.

Although her family, friends and colleagues were incredibly generous, it wasn’t easy for Naomi to look back on her own diagnosis and share her story with those who didn’t know her at that time of her life.

“It was the hardest physical challenge I had ever done and it was tough re-visiting it all but because I know all the ways that the money helps LBC it really was all worth it,” says Naomi.

Naomi recently learnt about another aspect of LBC when she joined the Leukaemia & Blood Cancer Research Unit Governance Board at The University of Auckland.

From being a patient receiving support, fundraising money to provide support for others through to sitting on the board being able to represent patients and understand how research money is being used felt like a full circle for Naomi.

“It’s nice to be at a point where my own diagnosis doesn’t consume me and where I am in a position personally and professionally to give back and help pave the way for other patients,” says Naomi.

“What I now do at PwC and the work we do for LBC really aligns with my values and it’s a huge privilege to continue working so closely with LBC.”

In June 2014, Tracey Hancock noticed a small lump in her neck that her doctor initially diagnosed as muscle strain. Tracey followed the advice given to her but when she collapsed in December that year, she demanded to have more tests done. After almost three months of tests, Tracey was diagnosed with nodular sclerosing Hodgkin lymphoma.

Within a week from diagnosis, Tracey was in hospital with a port in her chest and undergoing her first round of chemotherapy.

Tracey had gone from being active outdoors, running a business and competing in the Rotorua half marathon to being so tired she was unable to get out of bed. She says the diagnosis was a relief as it meant she could focus on doing what she needed to finally feel better.

As soon as she was diagnosed, Tracey drew on her professional skills as a life and business coach to take control of her health.

Tracey decided to be what she calls ‘the CEO of her life and health journey’ taking a proactive approach, asking questions and seeking expert advice and not relying on Google for answers.

“I concentrated on managing my thoughts and was always very conscious of the words I used. I chose not to see myself as a victim and instead positioned myself as the leader of my health journey”

After four rounds of chemotherapy, Tracey learnt she had stage two lymphoma that had progressed to her bones and she would need to undergo radiation to treat it.

Tracey says it was big news to come to terms with but she quickly turned her focus to the important task of caring for herself.

“My treatment was my highest priority so I treated it like a full time job. I packed my bag every day for chemotherapy and headed off to the hospital and focused on doing whatever I needed to do to get well,”says Tracey.

Tracey had always been aware of good nutrition but her diagnosis meant she placed a larger importance on her diet to help her through treatment and recovery. She got in touch with a nutritionist to help her understand how to best nourish her body during treatment.

Tracey also created a vision board – a visual reminder that featured pictures of all the positive things in her life that she always kept with her. It had pictures filled with sunshine, her family and friends, her bike and plenty of vegetables.

“Routines were another important part of my life at this time. My daily routine always included mediation, prayer and affirmations,” says Tracey.

“Throughout my journey I had an incredible support team including my partner Ian, Mum and Dad and friends and I was just blown away by their support. I realised early on how important it is to allow each person play to their own strengths, so my Dad, for example, grew me lots of vegetables,” says Tracey.

Tracey said one of the most difficult times when working towards achieving any goal, in her case completing treatment, is the moment after you get there, so she prepared a post-treatment plan.

“You go from being at the hospital almost daily and attending appointments to nothing and wondering what’s next,” says Tracey.

Tracey’s plan was all about acknowledging and celebrating her journey and those who had supported her, as well as setting small daily goals to build her strength.

It was in the months following her last round of treatment, Tracey also connected with Leukaemia & Blood Cancer New Zealand’s Waikato Support Services Coordinator, Matthew Eby.

“When I first called Matt we had such a long chat. It was so useful to talk to someone and hear another perspective on everything. He was so positive and encouraging”

Moving forward post-treatment, Tracey has reflected on her health journey and re-set for the next chapter in her life.

“I am more passionate than ever about my work and want to help people live their life fully and use their strengths to their advantage when going through tough times like treatment,” says Tracey.

“I’m feeling stronger each day and continue to be kind and loving towards myself and I am continuing to nurture my health which is a life-long commitment.”

In 2015, seventy-two-year old Jill Davenport and her husband Paul were enjoying exploring the country on their bikes when Jill started to notice problems with her skin and bowel.

After seeing multiple specialists Jill was diagnosed with Non-Hodgkin lymphoma which she says she knew absolutely nothing about.

“My tests showed I had enlarged lymph nodes so I was referred to a haematologist in Waikato Hospital and from there everything happened very fast,” says Jill.

After losing her former husband to cancer, Jill says the diagnosis was a shock and certainly not what she was expecting.

“I just sat there with my mouth wide open while Paul just burst into tears!” says Jill.

Jill initially underwent six rounds of chemotherapy, each lasting three weeks.

However, this didn’t work as well as her medical team expected so she started on a stronger round of chemotherapy called CHOP. After six more rounds of CHOP treatment and 20 sessions of radiotherapy Jill was told she was in remission.

“I’m thankful I put my trust in the professionals because it obviously worked!” says Jill.

Early into her treatment Jill met Matthew Eby, Leukaemia & Blood Cancer New Zealand’s (LBC’s) Support Services Coordinator in the Waikato who she says opened the door for her to meet other positive blood cancer patients

“I loved the positivity from Matthew and the LBC newsletters so I started going to support groups straight away. I met so many wonderful people and every single person had the same outlook as me.”

When she was first diagnosed, Jill searched the internet about lymphoma but found there was too much information to know what was correct or not.

“Matthew gave me lots of helpful information about lymphoma and helped me make sense of it all” says Jill.

Although the treatment was tough for Jill, she and Paul tried to keep cycling as much as possible. Before Jill’s diagnosis, the couple established an over 50’s cycling group in Waihi and Jill still tried to make the regular meetings even if it was just for a coffee and to see everyone.

“The cycling group offered a lot of support and they were all so encouraging even when I couldn’t manage to get on the bike” says Jill.

When she was well enough to cycle, Jill was understandably a little slower than before.

After seeing an ad for electric bikes from Mercury Energy, she got in touch with the company enquiring about the price while telling them her story. To her surprise they gifted her a brand new electric bike which helped her keep up with the others.

Jill says she hasn’t found her blood cancer debilitating simply because she decided she wasn’t going to let it get to her.

“Paul and I had already booked a trip to cycle the Central Otago Rail Trail before I was diagnosed. My doctor said I should only ride what I could manage and I ended up doing it all!” says Jill.

“I’m a big believer in living life and I want to show people if you have limited time to get out there and live your life positively,” says Jill.

Since being in remission, Jill and Paul have moved to Tauranga to be closer to the main hospital but still head to Waihi regularly to catch up with everyone at the cycling club.

‘’We are still riding every chance we can get and we’ve just booked the Otago Rail Trail again for next March which will be our ninth time!” says Jill.

“As far as I’m concerned I am living my life and having fun. It’s the same old me!”

Kay Hamilton has lived with large cell lymphoma for the last 20 years. Over this time her positivity and desire to give back has helped her overcome many challenges.

Kay was first diagnosed in 1998. At the time it was thought that once treated successfully, the disease would not return. Kay first knew something was wrong when she experienced severe back pain and was referred to an osteopath. It turned out her back was fine. She then saw another specialist about a lump on her neck and all of a sudden things began to get serious and Kay was quickly admitted to Auckland City Hospital.

“My doctors told me I was lucky to be alive as I had tumours all through my abdomen, on my spleen and aorta”

Kay says she credits her full recovery to an exceptional medical team who thought quickly and treated her fast.

“I had an excellent doctor and oncologist who were very supportive and attentive throughout my treatment. My return to health was due to a medical team who were so professional and very caring,” says Kay.

Kay was told the treatment was successful and she got used to her ‘new normal’ while getting back into her day to day life and routine.

Fourteen years later in 2012, Kay relapsed and was diagnosed with follicular lymphoma proving that contrary to earlier medical beliefs, the cancer could reoccur.

“I was just completely floored that I was diagnosed for a second time so many years later and my medical team were just as surprised!” says Kay.

She was admitted once again to hospital for treatment and the good news was that medical advances meant many improvements had been made to chemotherapy treatments.

“It was an extremely stressful and difficult time for my family and I. My husband Kerry had been diagnosed with incurable cancer at the same time and at one stage we were both in Auckland City Hospital undergoing treatment,” says Kay.

“While it took six months of treatment to clear me again of cancer, Kerry died around this time leaving a big gap in my life and that was not easy to recover from,” says Kay.

Recovering from treatment and the loss of a husband at the same time is hard to imagine, but Kay managed with the help of her dog Zippy, close friends and Rebecca, Leukaemia & Blood Cancer New Zealand’s Support Services Coordinator in Auckland at that time.

“Rebecca was just wonderful doing things like organising meals for me as I was on my own or simply ringing me up to ask how my treatment went. Grace and Tim also joined LBC later on and were just as wonderful,” says Kay.

”My close friends and neighbours were also always there for me and were kind enough to drive me to my appointments,” says Kay.

Kay said it was important to her to keep busy and to try help other blood cancer patients where she could. Kay wanted to support LBC so she began making patchwork quilts and teddy bears, which LBC gives to patients.

“The quilts and teddy bears are a way for me to stay busy and gift something lovely to children and families going through what I have been through”

Kay also shares the quilt making task with a sewing group called Shore Stitches, which meets regularly to complete squares.

Almost 20 years on from her first diagnosis, Kay is doing well and completed her two year course of maintenance treatment earlier this year.

“Nowadays I just get on with each day as it comes!”

John Edgar has always lived his life trying not to sweat the small stuff, when he was diagnosed with lymphoma at the age of sixty-six in 2015, he decided not to focus on worrying and to focus on getting himself better.

“I’ve always been proactive about my health and had regular check-ups. When I went for an MRI in April 2015 I thought I felt fine except for a small prostate issue I was having checked.”

The results of John’s scan showed that he had indolent follicular lymphoma. Instead of dwelling on the unknown, John says he simply accepted the diagnosis and decided “things could be a lot worse.”

John’s plan to retire at the end of 2015 was brought forward to midyear when he started treatment the day after finishing work.

“I always joke that starting treatment was essentially my retirement present!” says John.

Always one to look at the bright side, John says his whole treatment went really well with everything going to plan and his body seeming to react well to treatment.

“I’d had a small tightness in my abdomen for a few years before the diagnosis so I did wonder how long the lymphoma had been in my body.”

“When I first met my haematologist he said ‘this won’t be the thing that kills you’, so that put my mind at ease a bit!”

Soon into his treatment John started to lose his hair and the beard that he had sported for forty years. His wife had never seen him without it. Once again, John didn’t let it bother him and decided against wearing the woolly hat he had originally bought to wear.

John underwent six rounds of treatment which each lasted for three weeks. His body reacted positively for the first few times until an ongoing heart problem landed him in hospital each time after his last three rounds of treatment.

“Before I was diagnosed I had never been admitted to hospital so it gave me a bit of a fright!”

Being in hospital was an eye-opener for John and he was impacted by what others were going through.

“I was well looked after by the staff who were all amazing.”

Early into his treatment, John learnt to continue being proactive with his health which meant keeping a close eye on tests and results and not being afraid to ask questions.

Coordinating his own appointments, tests and doctors visits while also managing chemotherapy was important to John to wrap his head around everything and feel comfortable with it all.

“It’s up to you how you manage your treatment but I felt that when I was organised my mind was more at rest. You don’t know where anything leads but I do like to feel like I know where I am going!” says John.

John is slowly getting his strength back and learning to deal with fatigue and he still likes to get out and about when he can. He and his wife Jenny have kept themselves busy preparing to sell their family home so they can move closer to their three daughters in the Wellington region.

“We have tried to minimise stress wherever possible but it’s also been good to have smaller projects to focus on like getting the house ready to sell which keeps us busy,” says John.

John says the practical things helped him through his treatment like having his wife drive him home from treatment and the neighbours helping manage his property when he wasn’t well.

“What I have learnt is the importance of family and friends when things get rough. Being able to talk to anyone about what you are going through is a huge support,” says John

“When I talked about my diagnosis I realised it wasn’t as bad as it was in my head and it helped me realise it wasn’t something I needed to stress about,” says John.

By Christmas time in 2015 John had finished treatment and was happy to be starting a new year in better health and continuing to take a no stress approach to whatever life throws at him.

“We are just enjoying things as they come. There’s a lot of things happening in life and you just have to take one day at a time.”

Selena Dewar’s serenity in the face of serious health issues is both extraordinary and inspiring. Despite having to face lupus, shingles and three different lymphoma diagnoses, the Auckland mother-of-one remains the picture of forward looking positivity.

“My approach has always been to just carry on with life as best you can. I don’t look back very often. I feel things have played out well.”

What most people would consider mind-blowing courage is to Selena just a pragmatic approach to getting on with life.

“I was diagnosed with lupus when I was about seventeen so I got used to living with an auto-immune disease and its symptoms including arthritis, hair-loss and just general pain and fatigue.”

Selena says it was that experience that helped her deal with her first lymphoma diagnosis thirteen years later.

“I was used to attending appointments, receiving hard news and dealing with pain and tests. I think for me it probably wasn’t as much of a shock as it might be for some others. I felt I rolled with it pretty well actually.”

Selena says it was almost harder dealing with an inexact diagnosis than with the fact she had a blood cancer.

“They knew it was a type of lymphoma, but they weren’t able to work out exactly what type, so I was treated with immune suppressant drugs. The lump reduced andwe just crossed our fingers and carried on.”

Three years later, Selena received her second lymphoma diagnosis.

A biopsy revealed it was marginal zone non-Hodgkin lymphoma.

Selena says that while it was a relief to get an exact diagnosis, the fact that she was thirty three years-old and would have to undergo chemotherapy meant she had to seriously consider whether she wanted children.

“It was strange being forced into a position where I really had to think about it and make a decision. I’d only been with my new partner for three years and suddenly we had to work out if we were going to have children.”

“It felt a little unfair to be pushed into making these decisions outside of the natural course of growing up. Fortunately we were in a position where it was fine to make that decision but I can imagine that it must be extremely difficult for some people.”

Selena decided to undergo IVF to have eggs extracted before beginning her chemotherapy. After six rounds of treatment the tumour came back and she was advised to begin radiation therapy.

“It was a really scary moment when they told me the chemotherapy hadn’t worked and we had to try radiation. There was that panic moment when I thought what if that doesn’t work, what’s next? For the first time the fear started to creep in.”

Fortunately, the radiation treatment did work and three months later Selena and her partner decided they’d try for a family.

“My partner and I had an agreement that we’d give it three months to get pregnant naturally before using IVF. But I got pregnant straight away. It was lovely. I had a great pregnancy and labour with no problems.”

Selena describes her son Fox as a “dream child”.

“He’s a cool kid. Relaxed and calm. He’s barely had a cold, sleeps through the night and is really healthy.”

But Selena’s own health was still an issue and a year ago she received the news of her third lymphoma re-occurrence.

“It was much harder this time because I had a small child whereas before it was just me. You start to wonder what will happen if I don’t make it through. I was forced to think about my own mortality.”

Because of these concerns Selena decided to go straight on to the stronger of the chemotherapy treatments available. And her body responded.

“I had my last treatment in December. I’m looking at maintenance treatment because it seems to keep coming back. The thing that is new is that the treatment isn’t funded so that’s a new challenge.”

But if ever there was someone who was going to conquer a new challenge, it would surely be Selena.

“You can’t stop life. There will always be difficulties. You just have to take them on and make them a part of your life.”

“Sometimes it is difficult to not see things that are thrown at you as unfair. But if you’re able to look at them as just a new part of your life, then there’s no reason why they should stop you living life.”

Rose Stokes and her husband Colin have always been open and honest with their three children. So when Rose was diagnosed with lymphoma in early 2014, they decided to make sure their family knew exactly what was going on.

After feeling unwell for a long time, Rose went to see multiple doctors who were unable to give her a definitive diagnosis.

Rose told her children straight away that she was going for tests.

“We didn’t want any secrets in our house,” says Rose.

Rose’s youngest son Alex says it was good to be told right from the start that something was going on.

It’s scarier when you don’t know what is happening at all because then you always think the worst.

The family relocated to Auckland at the beginning of 2014 with Rose still unsure as to what was making her feel so unwell. One week after the move she was finally given a diagnosis of peripheral T cell lymphoma, a kind of non-Hodgkin lymphoma. Rose’s three children, Daniel (14), Jana (12) and Alexander (11) were told straight away.

The family have been able to openly discuss Rose’s treatment together and help her through the really tough times.

Although they are still relatively young, the children feel they have become more responsible since Rose was diagnosed and have tried to help the family in any way they can.

“We gave mum a spa and massage night and did her nails, we run her baths after she’s had a big day and we always make sure we get her out of the house to exercise so she is keeping healthy!” says Jana.

One thing that they have got to help with which they never thought would happen was to cut off all their mum’s hair.

I knew I would lose my hair from the chemotherapy so I decided it would go on my own terms.

The children all helped her by cutting it into a bowl cut then a mohawk before shaving it all off. This made the whole process easier and everyone felt more comfortable seeing Rose without hair.

Each child has decided who to tell out of their friends and peers at school. Jana’s teacher told her class that Jana’s mum had cancer.

“I’m really glad my teacher told everyone because it has made it much easier for me to talk about it on my own terms. If I ever got upset I knew that people would understand,” says Jana.

Both Alex and Jana agree that animals are a help during difficult times and they have both gone to their pets for comfort and a cuddle.

“I have put a lot of my energy into my horse and our cat as they help me to think and are very calming to be around,” says Jana.

Alex likes having the family cat around to sit and spend some quiet time with when he has lots on his mind.

Despite being unwell, Rose has still tried as best she can to be there for the family.

“Mum is still here but not in the way she used to be but we know she always tries her best,” says Alex.

“It can be hard sometimes when you are playing sport or doing something and you turn around and mum’s not there, but we know she would be there if she could.”

The children admit that despite knowing all about Rose’s autologous transplant at the end of 2014 they were still a bit worried.

“Mum going to hospital for a month did scare me a bit,” says Alex. However knowing where she would be and what was happening helped them to prepare for the change.

Mum’s cancer has changed our family forever and it will always be a part of our lives.

“Everyone’s situation is different and we are all learning what works for each of us to deal with everything.”

Esther Pekepo, an 18-year-old secondary school student from Auckland, was juggling her Year 12 studies with her hobbies, including dance and soccer, when mysterious lumps began to appear on her body.

“The first lump appeared on my chest, and it just kept growing until it was the size of half a golf ball. At first I thought it was a bruise but it just kept getting bigger and harder. Then other lumps started popping up over my body, on my stomach, my back and my chest. I think in all I had about ten lumps.”

Esther went to her GP, who prescribed antibiotics and sent her for blood tests which came back clear.

“My temperature was all over the place, I would be boiling hot, then freezing cold, and I was also really, really tired. As I was a bit depressed at the time I thought that perhaps my body couldn’t keep up with my mind. I was also having real trouble sleeping,” she says.

Esther kept returning to her GP over the next three months.

I remember the GP saying to me you’re too young for this, and wondering what that meant. Then it got to the point where I couldn’t sleep, could barely eat and barely walk as lumps had started appearing on my inner thighs.

She returned to the doctor’s surgery and was seen by a locum GP.

“He took one look at me and said something is really wrong here”. I was admitted to hospital straight away. They immediately started to do lots of tests and kept me in overnight.

“Heaps of doctors kept on coming in and out and looking at me. I felt like I was in an episode of House (a popular television programme),” she remembers.

“I just kept wanting to know what was happening and when I could go home. I had a big dance event coming up and wanted to go to the practice, but actually there was no way I could have done it.”

After extensive testing Esther’s haematologist explained that she had T-cell panniculitis, a form of lymphoma. She was grateful her guardians and family members were with her when she received her diagnosis.

“The doctor told me that my immune system was affected and that they would put me on medication. At that point I didn’t know how serious my condition was.

“I remember thinking thank God I’ve got lymphoma and I don’t have cancer.”

It was not until Esther returned home a few weeks later that her guardian broke the news to her that lymphoma was a form of blood cancer.

“Hearing the word cancer was just such a shock. It hit me really hard, it was like a slap. The doctors might have told me earlier about it being lymphoma but I don’t recall hearing the word cancer. I think that I could have dealt with it better if things were a bit clearer.”

Esther began a course of oral chemotherapy, had regular blood tests every day, and was in and out of hospital. She was determined to keep up with her studies.

“It was hard going. It was a while before I was able to walk again and I also had to learn how to write again, as my hands couldn’t grip anything,”

“I decided to focus on sitting one exam for English which I managed to pass,” she grins.

Esther also met Waiariki, a girl of her own age at CanTeen, who was diagnosed with lymphoma two days after her.

“It really helped me to share our symptoms and have a good laugh about everything that we were both going through. It was so strange, we had so much in common, we both liked to laugh and liked to dance and our favourite colour was purple. It was like we were one mind in two different bodies”

Gradually as her treatment progressed Esther began to feel better each day and returned to school to resume her studies, but had to keep physical activity to a minimum.

I didn’t want to tell anyone that I had cancer, I needed to understand how to cope with it before I shared it with other people.

Esther confided in close friends and family who were supportive of her.

“Actually a lot of people didn’t know I had lymphoma until they saw me in the LBC video for World Lymphoma Awareness Day. They were like, “why were you in that ad?” And I was like. “because I have lymphoma,” says Esther.

Esther is taking one day at a time and gradually regaining her strength.

“I’m back dancing again but I can’t do sport yet, as I still get quite tired. Sometimes I wonder if it’s because of my diagnosis or if I’m just unfit,” laughs Esther.

“I know I need to learn my limits, but I’m definitely pretty good at pushing them,” she says.

In recognition of her amazing spirit, Esther was recently awarded the People’s Choice Award at Onehunga High School’s senior prize giving.

“I was so surprised that people saw all the good in me. I thought the award should go to everyone!”

Esther has some insightful advice to other young people diagnosed with a blood cancer.

Don’t let it scare you. The only difference between yesterday and today is that you have lymphoma, you’re still the same person. You don’t know what’s going to happen, so take each and every day as it comes, just keep going.

“A wise friend once told me, every morning when you wake up the day is untouched, no one knows what’s going to happen, anything could happen. Touch the day with how you want it to go,” says Esther.

“I’ve taken lots of positive things out of having lymphoma. I had to hit rock bottom and be scared, and get over having cancer, to see the better things that are around me.”

“Lymphoma, yes it is a heavy burden, but ones strength and ability to remain positive through a time like this is the most overpoweringly beautiful gift you could ever acquire.”