A few days after they arrived at Starship Children’s Hospital, another New Zealand Firefighters Welfare Society representative came to visit.
“It was Darryl Johnston’s wife, who arrived with “a massive big bag of goodies – pens, colouring in books, a barbie doll and other toys. It was SO lovely – she came and visited once a week every week and when she didn’t come, Darryl came and occasionally they visited together. It was a time in our life when we were really low. We had no family or friends up there at all.”
The Starship Children’s Hospital stay went on for five months.
The Treatment
“Emily received chemotherapy treatment in preparation for the transplant. We were told to sit our children down and ask if any of them wanted to be a donor. All the children were tissue typed and it turned out they were all a suitable match for Emily, which was very unusual. Usually, you are lucky to get just one – if any. The donor wasn’t allowed to be Emily’s identical twin Hannah, as they didn’t know what caused Emily’s illness and didn’t want to risk passing it back. One of our boys put his hand up, but the hospital decided they would take the oldest one – much to his disgust!” Joanne recalls with some laughter.
“Ben had around 980ml of bone marrow taken from his pelvis and put in blood bags in preparation for Emily’s transplant. Emily looked dreadfully pale and was constantly vomiting because of the chemotherapy. In contrast, after the procedure, Ben was hungry, asking what was for lunch. “He was put in a room next door to Emily. Upon Ben’s return to the ward from surgery and as we came through the corridor, the whole paediatric oncology ward came to a stop, lining the hallway. All the caregivers, the nurses, the doctors, they all stopped and clapped as he came past and the words were said, ‘here comes a hero’. It was extremely moving.”
“After the procedure it was a wait, watch and see time and while all this was going on, we still had our regular visits from the New Zealand Firefighters Welfare Society, and some light-hearted humour – which was so welcome. These were people we hadn’t known before but we came to look forward to their visits.”
“During this tough time of ‘wait and see’ Amanda had a family oversees holiday planned “and her kindness extended to the point that she apologised that she would be out of contact for a short time. Upon her return, we couldn’t believe what happened - she came back with presents from Disneyland for all four children. It was so lovely of her! She sent them up to us through the post. Even though she was so far away, she was still thinking of us,” Joanne said.”
Extra Incident #2
Hannah and Cameron were asked if they would like to go to a kids Christmas party next door to where we were staying. They were so excited to be included to have some fun times.
Hannah decided she wanted to have a turn on the the climbing wall. She was having a great time, but she wasn’t strapped in properly and fell 3-5 metres, breaking her leg in two places. Lying in pain on the ground, the first on the scene was Father Christmas. An ambulance was promptly called. Joanne and Craig could barely believe this latest turn of events.
Hannah received a plate, screws, a wire in her leg and a moon boot, receiving the last of three surgeries on Christmas Eve. Craig and Joanne were at the hospital for another month, pushing around a wheelchair each. They dressed the girls up in some nice sunglasses and hats, taking them out for walks around the viaduct basin, trying to make the best of a bad situation.
Meanwhile, Emily’s procedure went well until a week after, when she came out of hospital and developed shingles. Emily went back into isolation on the oncology ward again. Joanne was on the ward again with Emily, along with her twin sister, Hannah and brother, Cameron.
“Once again, the friendly faces from the NZ New Zealand Firefighters Welfare Society turned up, this time with a big bag of goodies for Hannah. “They were so thoughtful and so kind. They really went out of their way for us. I remember one time they met up with us and had their grandchildren with them as it was the school holidays. We had afternoon tea in Newmarket with them. It was so lovely.”
By the end of January, the family was able to return home to Wellington. Thankfully that was the end of the spate of medical events.
