A bit about Kali and leukaemia

As most of you know, my daughter Kali is the inspiration for our event. Kali is now 11 and has been in remission for 7 years. She was diagnosed with Acute Lymphoblastic Leukaemia at age 2 and had daily chemotherapy for 33 months. Her chances were 1 in 3 for not surviving. Kali is still at risk.

This type of cancer (of the blood) was considered a death sentence 40 years ago. For adults and teens still, leukaemia is not the most treatable type of cancer. Because of various clinical studies, this has enabled young children to have greater success with their treatments.

Kali was the first child in North America to be placed on a particular study that involved aggressive treatment, comparable to adult dose with additional drugs that placed her at greater risk of harmful side effects including fertility, heart defects, irreparable nerve and brain damage and secondary cancers. There were many more - a lengthy list, however the greatest side effect was our daily nightmare - severe immuno suppression resulting in death. It was understood that 1/2 of cancer patients that are lost is due to result of treatment, not the cancer.

Septic shock occurs when the body cannot produce enough neutrophils to attack foreign bacteria, or even its own. Needless to say - we were extremely careful with our daughter.

We learned to live in a bubble. Having a cold/ flu or dreaded viruses/ bacteria enter our home was never an option. Bacteria being the most threatening as it can take a life in a few hours.

A fever over 85 meant 120 k down Groat Road, 8 hours in emerg and a minimum of 3 days in isolation (masked and gowned). There were many of those occasions. Just after our Wish Trip in 2001, 16 of those in a 6 week period. Kali had Parvo that time. Another occasion was pneumonia, another was pancreatitis to name just a few. We knew of a mom that stopped on the way to emerg (cancer with fever) to feed her child at McDonalds. She know the wait in Emerg would be lengthy, so she had prepared. What she wasnt prepared for was being too late. She lost her child - that quick.

Kali remembers very little about her treatment (which is great for her - wish this also applied to us).

This is why we are funding research for children's cancer. Yes, treatment saves live - can't argue with that. It can also takes lives, it destroys healthy cells, robs childhood and leaves residual damage. Although I have noted that Leukaemia treatment is on the improve (milder and shorter in duration), we still need a cure. A cure for all cancers. We just need it to go away.....