Join Nora's Army
Life saving treatment for our darling NoraCanterbury
In August 2018 5 year old Nora was diagnosed with hepatoblastoma, cancer of the liver that occurs in 1 in 1 million. Unfortunately, Nora's cancer was also found to be in her lungs. In the last 14 months Nora has gone through 9 rounds of chemotherapy which caused the usual side effects but it also caused permanent hearing loss, she has had 3 surgeries including removing 60% of her liver, her gallbladder and half of one lung. Nora now has over 850 beads of courage.
It was found the likely cause of Nora's cancer was a TP53 gene mutation, this gene helps suppress the growth of tumours. This now makes her susceptible to a large number of cancers at much higher risk than the general population. Heartbreakingly, Nora's Dad and little 3 year old sister were also found to have this and are now undergoing testing for cancer.
Nora's liver remains cancer free but the disease in her lungs is proving to be stubborn. Nora, now 6, has exhausted all of the curative treatments available in New Zealand but she has been accepted into a CAR T cell trial in Texas which is her last chance for a cure. The trial is part funded but we need your help with the rest. The costs including the unfunded portion, accommodation and flights is estimated at $210,000 NZD but this could change if Nora had to be admitted.
It takes a village to raise a child but we need an army to save ours.
Use of funds
Unfunded portion of the treatment, accommodation, flights and expenses in Texas. If things changed and we no longer required the money we would use some to make Nora's last days amazing plus create a charity in her name to assist families with cancer.
This is our final update before the page closes in a few days.
The hugest hugest thankyou to each and everyone who helped us, donated and supported us through.
We have now been home for a few days. Being home after 5 weeks is so incredible. Home is amazing.
Before we left Houston we found out the T cells had a significant effect on Nora's cancer. They found neurotic tissue in her biopsy and her AFP dropped over 4,000!!! Which is a huge result.
We still have more monitoring to go until we see the final results but we are hoping for a remission Christmas present.
We have started donating where we can back to families facing advanced cancer like us. And we will carry this on going forward. Hoping to share some Christmas love especially in our own child cancer ward too.
Once again thankyou. Nora has helped pave they way in hepatoblastoma research which is so incredible.
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This page was created on 20 Sep 2019 and closed on 20 Dec 2019.