KEY POINTS:
We were cruising through life like any other normal family. I was eight months pregnant and really excited that Te Ara would soon have a brother.
It was a big countdown, an exciting time, but then 3-year-old Te Ara woke one morning near Christmas, and her eye was
misaligned.
We took her to the doctor but kept being told she was just overtired from the holidays.
We went on holiday early in the New Year but there was no change to her eye and her ear started to hurt. We took her to our GP, who immediately referred us to an eye specialist.
There was no infection and she had perfect vision, so we were referred to a paediatrician. After extensive tests, a simple blood test was all it took to confirm our worst nightmare - not just leukaemia but a rare, aggressive type that is hard to treat, acute myelogenous leukaemia.
We couldn't believe this was happening to us, to our family, to our girl. I remember walking back into her room and my husband Tony was crying. He couldn't even say the word at the time. He just cried and cried.
But we agreed we wouldn't cry in front of her, no matter what they found. We thought the worst and felt everything was crashing around us. We hadn't even told our family that she was in hospital and they wanted to send us to the Starship the next day.
But Te Ara had been poked and prodded so many times in one day and was becoming scared of the whole process. So I asked if we could have one day where her whanau could see her before she went to the Starship.
We were prepared for them to do whatever they had to to get her better and knew her life would never quite be the same again, so we just wanted to give her one day of love without any needles or machines.
There were floods of tears as whanau and friends arrived to support us and we felt like the luckiest of an unlucky bunch because we were so blessed to be surrounded by aroha.
We would have done anything to trade places with her, so the next best thing for us was to give ourselves.
We would do alternate shifts so that one of us was always with her through her six months of treatment. It left little time for our relationship but we focused on the outcome, which was to get rid of the disease.
When I gave birth specialists took stem cells just in case Te Ara needed a transplant. The best way to collect was by natural birth but after labour complications I had a Caesarean. I was upset because I thought it was all a waste of time, but they got a good collect.
I was two floors above Te Ara when I had Taniora. I just wanted to be with her but couldn't move. It was tough - emotionally and physically. I lived at Ronald McDonald house with Taniora. There were days when I couldn't visit Te Ara, so we invested in video phones so that I was always just a call away.
From the date of delivery my family and friends organised a roster system so that someone was with us at all times. On good days Te Ara would be disconnected from her machine so we would have discos in her room, pump up the music and dance around.
We decorated Ward 27b with balloons and crepe paper during the Super 14 rugby season and let her be the Easter bunny and place Easter eggs outside the kids' rooms late at night. We had a hair-cutting ceremony for Tony in Te Ara's room. Te Ara thought it was the best game and that helped us get over the whole worry of her losing her hair.
A lot of time was spent convincing her that a particular process was necessary, for example putting in eye drops. Her reward was a "bravery bead" for her necklace.
The Child Cancer Foundation (CCF) helped us in a huge way. There was confidential and emotional support. It's different talking to someone who understands what you are going through.
Their office turned into a place for parents to share, cry, talk, seek advice or just listen to music. They gave us use of email facilities to keep in touch with everyone, as well as information packs on all the services available to families, vouchers in times of hardship, regular visits and gifts for Te Ara.
I'm on the CCF board now because I want to give something back to this organisation which did so much for us. Some people would rather forget their experience with child cancer but for us it was such a huge part of our lives that we found healing in sharing it.
Te Ara is not receiving any treatment now and is in remission. Relapse usually occurs within three years after treatment so we have to report any sickness to the hospital, but so far no trends have developed.
We do pre-school correspondence at home and she also attends music classes. She is looking forward to starting school when she turns 5 in August. Even though Te Ara is coming up to a year in remission, relapse holds us to the disease so I guess it's really a matter of taking control of that emotion, and wishing the "why us" question away.
Child Cancer Appeal
The Child Cancer Foundation is holding its annual fundraising appeal, selling bravery beads which represent the struggle young children face. To support the foundation you can:
visit www.braverybeads.org.nz to make an online donation.
Call 0900 4 CHILD (0900 4 2445) to make an instant $20 donation.
Text BEADS to 206 to make an instant $3 donation.
- HAWKE'S BAY TODAY
