Inspirational Stories

Happy Birthday Lowri

Liam, Lowri and Roosje having great fun!

Four years ago today you came into our lives…How will we get through today without you here? The day before you died you told me that you wanted a ‘pink cake’ and that you still wanted to go bowling for your birthday, and ‘no boys ’! (I knew you would cave on that last one).

You are still so much the focus of our family, and we miss and love you so much. I look at the pictures of your third birthday - we were a ‘normal ’ family then, we hadn’t heard of Wilms’ Tumour, we didn’t know where Starship Hospital was, and we thought we had you for years. How quickly everything changed. I will cry buckets today, but I will make you your pink cake my darling. We love you forever Lowri.

December 25th 2001 was to be Lowri’s last Christmas - although nobody knew it. Lowri van der Werff (3), younger sister to Liam (6)and Roosje (8),was a bright, happy and healthy girl. She loved having a big brother and sister to look after her. Being the youngest, Lowri was used to fitting into the family’s hectic schedule and this Christmas was no exception. Her dad, Tim, was in Whakatane caring for his dying mother. Harri, Lowri’s mother, was looking after the three children, two cats and a puppy! On the morning of her grandmother’s funeral Lowri complained of a sore stomach. It wasn’t the first time, but the pain usually went away quickly. Harri took her to the doctor. “As soon as the doctor saw her he knew something was wrong,” Harri said.“ After some tests I was told that Lowri had a huge tumour on her kidney.”

Harri was devastated but decided not to tell Tim until after his mother’s funeral. Later Tim and Harri learnt that Lowri had Wilms’ tumour – a paediatric cancer -which they were told was 98% curable.

The van der Werff’s returned to Auckland for further tests and treatment and although the news about Lowri’s condition was positive, the family struggled. “We found the whole experience isolating,” Harri said,“ and we were not very good at asking for help.”

"You are still so much the focus of our family, and we miss and love you so much."

“We didn ’t know anything about cancer or what to expect. The doctors answered our questions but we still needed to know more,” said Tim. The van der Werff’s turned to the internet for information and support, and found it among support groups for parents of children with cancer or who had lost children to cancer.

In January 2002, Lowri had an operation which removed all of her left kidney followed by radiotherapy and chemotherapy. The family still believed that she would recover. “Liam asked every week whether Lowri was going to die. We said we hope not,” said Harri.

For Lowri, staying at Starship Children’s Hospital became a normal thing that kids do. Although she didn ’t want to talk about her illness, Lowri knew all the jargon. Harri recalls Lowri scooting up the corridor on her IV trolley and asking a four-and-a half year old whether he had a Hickman or a Portacath (different types of tubes for inserting drugs).

In March Lowri had a relapse with tumours growing in her lungs. A second operation, more radiation and harsher chemotherapy followed, but in June Lowri had a further relapse and, after an ultrasound, the doctors found two tumours on her liver and a new one on her lung. It was not curable. “The doctors said they would ‘stop trying to cure her but still treat her ’,” Tim said.“ Possibly something may have extended her life or given her a better quality but nothing would have cured her.”

Tim and Harri were devastated. Seven months ago Lowri was a healthy three-year old, then she had cancer that was almost certainly curable, now she was dying. At first they questioned whether the hospital’s decision to stop trying to cure Lowri was a financial decision, whether she might get better treatment overseas and whether there were any trials she could take part in, but an extensive worldwide search found no curative treatment for Lowri.

The van der Werffs were introduced to Starship Children’s Hospital’s palliative care team. Although the team was good there was only one nurse covering the whole of Auckland, so they opted instead to work with North Shore Hospice. “We wanted somebody who could come straight away if we needed help, to be here within 20 minutes or be available on the phone 24 hours,” Harri said.“ We wanted someone who could commit to getting to know Lowri.”

“A nurse for Hospice came round every second day and assessed the medication dosage. They would chat with Lowri then we would sit and have a coffee. The nurses were a good support for me and were good at explaining things,” Harri said.

We love you forever Lowri

Things were not easy during this time. The tumours kept on growing inside Lowri and although she fought bravely to be a normal active child the pain became too much.

Initially getting the right medication was a difficult process involving the North Shore Hospice, Starship Hospital and the local pharmacy, but eventually these problems were ironed out. The van der Werffs ’ hope the system can be improved to make things easier for the families and children involved. On the 23rd September 2002,Lowri died peacefully at home.

“She was a brave and beautiful soul who didn ’t want to die. She didn ’t deserve any of the horrible things she went through in her far-too-short life. We miss her more than words could ever tell and will continue to do so until we join her in heaven,” Harri said.

Harri has set up a memorial website www.kiwiangels.org for children who have died from cancer. For more information contact Harri on info@kiwiangels.org or 021 132 3233.

Hilary Boyd