Jesse Whare will be admitted to Auckland City Hospital next week to have a bone marrow transplant. Photo / Stephen Parker
Jesse Whare's playful grin will be toothless by Wednesday evening.
Her upper lip, a bulging arc, hides her already-absent top teeth.
The 44-year-old has braved countless hospitalisations, rapid weight loss, constant fatigue, half-a-dozen bone marrow biopsies, teeth extractions to prevent infections, blood clotting and depression since being diagnosed with chronic myeloid leukaemia three-and-a-half years ago.
In August, Jesse's condition worsened to accelerated myeloid leukaemia.
But she's confident she's "going to be okay now" - because she's got a bone marrow donor match.
Transplants to replace existing marrow with healthy bone marrow stem cells are often the only cure for blood conditions or blood cancers like Jesse's.
The recipient has high-dose chemotherapy and sometimes radiotherapy in the days before "day zero", transplant day.
Jesse's nine siblings were all "tissue-typed" to be her donor.
Once they understood the donation process, their apprehension turned to eagerness, Jesse's sister Bree Solomon says.
"'I hope it's me, I hope I get the opportunity to save you.' That's what we were all thinking when we got tested."
But the only match was the one whose results were last to arrive: Jesse's 23-year-old "baby brother Brenz".
Brendon Whare describes his compatibility as "a blessing".
"I am hoping for her [Jesse] to be healed, so she doesn't have to struggle any more."
But it is not a guaranteed fix.
Some donor cells fail to engraft and sometimes cancer or disease will return.
Jesse will be admitted to Auckland City Hospital on December 5 and start chemo on her birthday, December 8.
She will begin receiving Brendon's cells later in the following week.
She will spend about 100 days in hospital after the transplant and most of the first month will be in isolation.
"I am hoping that I recover 100 per cent," she said. "I have three moko. So I want to be around to watch them grow and to be able to walk long distances again.
"I can't do long walks, probably only five or 10 minutes now. I used to go to the gym quite a bit but that stopped because I am now breathless all the time."
Teeth that pose a high infection risk have to be removed before a bone marrow transplant so they don't contaminate blood with bacteria.
On Wednesday most of Jesse's bottom row will come out.
Getting top teeth out earlier this month wasn't physically painful for her, but it was emotionally hard.
"When the dentist got to my last tooth and he pulled it, I felt a loss. I cried right in front of him. I think I sat there for about 20 minutes before I actually got up.
"I had carried these teeth for over 40 years and they had to be ripped out of me. I was angry at the same time, at the sickness, but I got over it after a couple of days. I had to."
The Whares are a tight-knit family - to the extent all of the siblings have a tattoo that says "family first".
Despite this, Jesse admits she "suffered in silence" for some time.
There were parts of her sickness she just didn't want to talk about.
But she was inspired to start a Facebook page last month, and is now posting updates for close friends and family, after reading about Kawerau 22-year-old Victor Richmond receiving a bone marrow donation from his brother - the only full match of his seven siblings.
His Māori and Welsh ancestry lessens the chances of him having a match on the registry but he hopes he won't have to look that far, because the new marrow is grafting.
"It is growing inside of me and doing all of the right stuff."
Not everyone can find a duplicate relative like this so the New Zealand Bone Marrow Registry was set up in 1996 to link patients with unrelated donors.
Mixed-race Kiwis are the hardest to match, so the registry only takes on people with at least one non-European ancestor.
It's success rate for matches for Māori has grown from 30 per cent when it started to 70 to 75 per cent, according to executive officer Raewyn Fisher.
Whakatāne 3-year-old Chace Topperwien needed a bone marrow donor, but a match could not be found.
Chace was fighting a more aggressive form of the cancer Jesse has, and he died in June 2013.
His mum Keri Topperwien says "the news that there was no possible chance - of all the people in the world there was not one single match for our son - it was actually harder than the news of the diagnosis of cancer.
"The little girl in the room next to us also needed a bone marrow transplant. She was Pākehā. They put her details into the database and she had six [donors] to choose from."
Keri and her husband Ryan Topperwien established the Dream Chaser Foundation, which fundraises to give financial help to parents with sick children and campaigns to find new donors for the registry, with several success stories.
"It is actually really simple to donate, just like donating blood," Keri says.
"You can just go to the NZ Blood centre, not the hospital, and you sit in a chair and they put a needle in both arms. They take blood out of one arm because bone marrow lives within your blood.
"Then they put the blood into a machine and they spin the bone marrow out ... through the other arm, they put the red blood cells back."
She thinks the donation process is better described as a "transfusion".
"Because it's called a transplant, people think 'ooh heart transplant, kidney transplant.'
"That ups the level of anxiety for people about donating but it's the wrong impression."
Donating bone marrow can be compromising for Māori whānau like the Richmonds, the Whares and the Topperwiens because tikanga deems bodies sacred and traditionally they remain whole.
But these three Bay of Plenty families are among a growing number of Māori for whom the importance of whakapapa takes precedence, in te ao Māori.
In Keri Topperwien's words, "if Māori don't donate, those whakapapa lines [of those needing a transplant] will stop forever".
Bree Solomon says donating also aligns with "the roots of te ao Māori and what it actually means - it's about quality of life".
The three whānau don't know each other, and they never knew about the importance of bone marrow donation until one of their own was in need, but they all share the same message.
"We need more donors."
The New Zealand Bone Marrow Registry has 13,000 willing donors registered, most of whom are mixed race.
Executive officer Raewyn Fisher says the registry, supported with Government funding, aims to enlist at least 420 new people a year.
The registry was part of a global database of 36 million donors, mostly Europeans.
The Ministry of Health's most recent estimates say bone marrow transplants are a curative option for about 40 to 50 per cent of recipients, depending on their illness, age, general health and how close the match is.
Ministry data also shows the number of annual bone marrow transplants performed in New Zealand grew from 118 in 2002 to 305 by 2016.
Each one costs our health system tens of thousands of dollars, sometimes more than $100,000.
How to donate
You can join the New Zealand registry by donating a unit of blood, less than two cups, at a NZ Blood Donor Centre or mobile blood drive. Simply ask about joining the registry when you make an appointment to donate blood.
Eligibility criteria
• Males with Māori or Pacific Island ancestry (or) males with an ancestor from any NZ ethnic minority group
• Aged between 18 and 40 years old and in good health at the time of registration
• Able to meet the NZ Blood Service requirements to donate blood
• Willing to donate bone marrow to any patient anywhere in the world
More than 44 operators affected, including Tio Ohiwa and Kohutapu Lodge.
