A mother and her daughter's story

My name is Nicola Russell - I'm 35, and I immigrated to New Zealand in 1997 from the shores of Carlingford Lough in Ireland.

In March of 2005 my daughter Kenzie started to suffer from terrible pains in her tummy - she was in excruciating pain. I took her to the GP who told me it was behavioural - as a mother I knew it wasn't and took her to Starship.

After three weeks of investigations and Kenzie's condition deteriorating to the point she was paralysed from the neck down - I demanded the hospital do an MRI they had cancelled twice. We finally discovered Kenzie had a paraspinal Ewings Sarcoma tumour located at the top of her spine and we started an intensive chemotherapy regime, coupled with surgeries and rehabilitation.

My marriage broke up in June, then on July 15th I was diagnosed with aggressive stage-3 hormone positive and Her2 positive breast cancer - which in layman's terms means it wasn't very good!!!

I had a double mastectomy on August 24th and chemotherapy began on October 14th. My oncologist advised six month's of intensive chemotherapy, followed by radiotherapy - then either an ovarectomy or drug treatment to control the release of the female hormone estrogen.

She also said if I could afford Herceptin - which is a drug that blocks the signals from the Her2 gene and reduces the chances of my cancer returning by 52 per cent - I should go on it for a year. Unfortunately, I did not have the means to pay $120,000 for this drug, as I was a sole parent caring for a critically ill and disabled daughter.

Kenzie was doing well by now, she had regained some movement, was able to crawl and was spending more time at home. Even though things were tough, we spent many happy days at the parks and the beach with the children - and they were so happy.

Kenzie took everything in her stride and enjoyed herself. She was an inspirational little girl. She also understood her mummy was sick, and knew when mummy could not come to the hospital when I needed to see my doctors.

Our story went out in the local newspaper here, highlighting the plight of cancer patients like Kenzie and I having to advocate constantly for support services, and for women with Her2 breast cancer needing the cancer treatment drug Herceptin.

Then Kenzie took sick on the 23rd of December 2005 - she spiked a temperature like she did so many times before. That night Kenzie crashed and was put on the ventilator. Those first few days, I lay in bed with her, cuddling her. But, on day four she needed dialysis as her kidneys began to fail. This was so hard for me as I could no longer lie beside her and cuddle her. I prayed so hard for a miracle that she would pull through, but it was not to be.

On day seven, the 29th of December 2005, Kenzie's blood pressure kept dropping, and the consultants told us that she was letting us know it was her time. I gave the permission for them to take her off the machines so she could die in dignity - I just wanted to hold her again.

I brought her into this world on her life's journey and I wanted to be the one accompanying her and holding her on her journey at life's end. I miss her everyday, but I had the joy of three wonderful years with Mackenzie and I wouldn't change that for a thing.

I have a wonderful son, Conor, who has coped so well with all of this and I still want to be here for him to watch him grow up and enjoy life. I believed something positive had to come out of all of this, so I took our story to the national media to let New Zealand know the plight of mums, daughters, sisters and families around the country who needed access to cancer fighting drugs like Herceptin.

I cannot believe that nearly three years later we are still fighting for access to Herceptin for the two women every day in New Zealand who need it. Women don't have to die needlessly.

I was fortunate that many people in my local community and around New Zealand very generously donated the funds so I could have my Herceptin treatment, because I did not have the physical, emotional or financial ability to raise the funds myself.

I was grieving for my beautiful poppet and fighting to get through every single day without her. It is still hard, but every day I am thankful I am here, because I get to be with my son and watch him grow and enjoy the simple pleasures in life.

So to all who have helped me, I am eternally grateful. I don't know how I will ever repay the kindness and generosity that has been shown to our family. I believe Kenzie touched a lot of lives when she was here with us and she is still doing it now. It is her strength that keeps me going. I just want to be here too for many years to come, to enjoy my son and give something back to the community which has so helped us.

It's now time that the New Zealand government started to give the gift of life back to its women and give them access to the gold standard treatment of care our sisters receive in 33 other countries around the world. Come on New Zealand, make Breast Cancer Awareness Month actually mean something...