Kere’s Story

Kere was a young mother of one when she underwent a bone marrow transplant in 2012. She is now thriving and running her own successful business Loobylou Candles. Kere has teamed up with Pamela, founder of UR the Cure to support the cause that saved both of their lives. The idea of Loobylou was conceived during Kere’s time in hospital and in the same year just a couple months later, Pamela conceived the idea of UR the Cure in hospital during her transplant! Now many years later the 2 founders have come together to raise funds for the cause, “Candles for a Cure” - because purchasing a candle helps us find more lifesaving matches to cure blood cancer patients! Kere has been a wonderful supporter of the cause and has raised much-needed funds via Loobylou Candles for UR the Cure. Some of her beautiful products are available in the UR the Cure online fundraising store!

WHAT WAS LIFE LIKE BEFORE YOUR DIAGNOSIS?

I had a good life, I was the busy type. Always doing, creating, learning – rarely sat still. In hindsight, I think I sweat the small stuff a lot more. Let’s just say I had a whole different set of priorities. Lymphoma was my second primary – I was first diagnosed with thyroid cancer in 2008 and underwent a total thyroidectomy and ablation. If anything that made me a little more fearless – and manic. My response to that cancer was do, do, do – life can be cut short. Now, I’m much more aware of life being precious. The people you surround yourself with, and the things you do – they make every moment.

I sucked it up in a big way for the wedding, though I felt really truly awful. The rest of the trip I was so tired and unnaturally so. I would need a sleep during the day and had frequent woozy spells, which I put down to being tired, run down and perhaps a little insulin resistant. I planned to check in with my endocrinologist to measure my thyroid levels and insulin resistance. Basically, I got sicker and sicker in the weeks following. I had fevers, trouble breathing and was in terrible pain in my liver area. My GP sent me for an ultrasound, which showed enlarged lymph nodes in that area. He was the first to mention the word ‘lymphoma’. Following this, while my GP was away on holidays, I continued to decline. My husband took me to our local hospital where I was diagnosed with a virus and discharged. After a few days of further decline my husband took me to see my returned GP. He was less than 100 metres up the road, and it took me an hour to get there. The pain, shortness of breath – it’s all a blur. He insisted we go right then and there to a major city hospital. My diagnosis took a little while to confirm: Angioimmunoblastic T-cell lymphoma stage 4. Lymphoma hides and moves and it wasn’t until my haemoglobin count drastically dropped (from the cancer consuming the red cells) that the haematologist was called. By this time I had over 30 litres of fluid in my abdomen, pneumonia, scabs covering my body - you name it – things were really bad. I remember overhearing little bits of information, I remember the priests trying to read me last rites and telling me to make peace with God. Once I assertively told them I wasn’t dying, they didn’t visit again.

WHEN DID YOU DISCOVER THAT YOU NEEDED A BONE MARROW TRANSPLANT?

Quite early in I knew it was on the table. My doctor and his team always kept my husband and me fully informed. We also took our 9 year old daughter into consultations. I decided that it was important for her to have the accurate facts so she felt informed and included. I think children have a tendency to worry more when not armed with facts, and those thoughts can be worse than reality. My first treatment was a CHOP regime of chemo – 6 rounds. Following that, I had an autologous stem cell transplant. However I had relapsed within 3 months

WERE YOUR FAMILY TESTED AS A POTENTIAL MATCH?

Some were, though none were identified as a match. Going through this you really see people. You see who will be there when the chips are down, and who shows up. Not all of my family were tested, but the ones that were I can never thank enough. My friends, their friends and those that rallied their support and belief in me – this I consider to be one of the biggest weapons I had in this fight. One thing that I found confronting was that as I am part Maori, my chances of finding a donor were significantly reduced. Not enough to have made my options limited, but enough that my ethnicity was a factor. Having grown up in New Zealand it terrified me to know that a good proportion of my friends that are from various ethnic minority groups (Maori, Pacific and Cook Islanders) wouldn’t have the same chances of finding a donor if they were in this situation. Becoming aware that minorities only account for 3% of donors on the registry has made me intent on educating my community to be tested and join the registry.

HOW DID YOU FEEL KNOWING YOU HAD FOUND AN UNRELATED MATCHED DONOR?

Ecstatic – then scared. What if they pulled out? What if it was all too much? It’s like winning a lotto draw but the prize is your life. There were three potential options from memory. Two 7/10 matches and one 10/10 match in the form of a young overseas donor. It is emotionally overwhelming to this day what this incredible person did for me. They gifted me with my life back.

WHAT WAS PHYSICALLY AND MENTALLY INVOLVED IN THE TRANSPLANT?

by the time the transplant came around, it had been a year and a half since symptoms presented. You find a strength you didn’t know you had because you have to. You only have two options - fight, or give in. I was born determined, and that wasn’t changing. Another beautiful thing was the date of my transplant. It fell on the birthday of my first God-daughter. Her birth was a catalyst for me changing my life around when I was younger, so it’s poignant and incredibly special for me to share her birthday, with my re-birthday.

HOW LONG WAS YOUR RECOVERY?

Does it end? Lymphoma is ever present - no matter how fully you live every day. I have certain tells now, when I know I need to slow down – and I’m getting better at listening. It’s just over three years for me since my transplant.

HOW WERE YOUR FAMILY AFFECTED?

My husband and daughter were affected on every level. I was really conscious of their support systems during this - it was their journey too. My incredible daughter was adamant from day one that I could do this. I can’t imagine the pressure my husband was under - his world was upside down. As a unit, we are three incredibly different personalities that somehow make up the perfect team. We laughed - we always laughed. None of us ever lost our humour (though it drove my medical team nuts with my hospital antics!).

WHAT IS YOUR LIFE LIKE POST-TRANSPLANT?

It’s the little things you miss every day when you go through something like this. Lounging on the couch with your family or laughing with friends. The beauty in the everyday will never be taken for granted again. Even when I whinge about washing, I’m always aware of how grateful I am to be here to whinge about the washing. I’m still a do-er, but I listen to my body more. I take risks, and I work hard – but my work is not my life. I am certain those I love, know that I love them.

DO YOU HAVE A MESSAGE FOR YOUR DONOR?

How can you ever thank someone for giving you your life back? For giving your child her Mum back? There’s never a day that passes where they are not present in my heart. People like my donor make the world a place worth fighting to stay in.

WHAT ADVICE WOULD YOU GIVE TO OTHER PATIENTS UNDERGOING A BONE MARROW TRANSPLANT?

Be grateful. Even when everything aches, you are here to have this option. We are so incredibly lucky in this country to have access to such profound medical professionals and such a great medical system comparable with anywhere else in the world. It hurts, and it’s hard, and some days you will probably wish you are dead - but you are not. Hang on tight because you are blessed to have this option. Drink lots – chamomile and spearmint tea, ginger with Manuka honey and a teaspoon of apple cider vinegar settles the worst of the nausea. Be honest with your team even when it sounds and feels silly. Ask for help – from your doctors, nurses, family and friends. I was a warrior before and I found it hard to be so vulnerable. But that’s what real love and trust is, seeing those incredible human beings that are there for you. Let them be.

WHAT WOULD YOU SAY TO SOMEONE WHO IS CONSIDERING JOINING THE REGISTRY AS A DONOR? There is nothing you can do that will ever be more important than this. I am only here because of the generosity of a stranger. Being a part of the registry is being among the very best of humanity.

Acknowledgment and story courtesy of the Australian Bone Marrow Donor Registry annual report 2015.