A Parent's Insight:
Narelle Jansen

An unique chance to follow the cancer journey of Narelle and her daughter,
Evie a representative softball and a personnel insight into the rollercoaster
of emotions a parent endures.

1. What was the diagnosis of your daughter?

Diagnosed in September 2018 with Osteosarcoma in left distal femur. She was 13yrs old at time of diagnosis and the solid tumour was 11cm long x 6cm wide.  Being a representative softballer for ACT we first thought it was a sports injury, little did we know it was a tumour the size of a softball!

2. What was your first thought that came to mind?
Cancer is known to be a death sentence and that is what I thought it meant for us. I immediately knew our lives would be turned upside down.

 

3. What did a low day look like for you as a parent?
Occasionally I had no motivation but had to keep faking it so my moods didn’t affect my daughter. One day, about 2 months into treatment, I cried and cried all day. The impact it has on a carer is really a space that needs more attention given to it, both whilst undergoing treatment and post treatment. 

4. What does life for you two look like now?

Evie has been free of cancer for over 2 years now. She has pain in leg and unable to walk, run and play like she did before. This has affected her mental health, fitness and school attendance.  Every time we have a review our anxiety builds but we are thankful to be home.
 

5. What were your biggest obstacles as a family? Financially? Wellbeing?

Financially we were ok as I had 20yrs of long service leave which I used in entirety. There were not many out of pocket expenses, besides meals. I think our well-being was impacted, away from family, friends and pets, not knowing when able to return home. (Always depends on blood count etc) 
 

6. What was the worst treatment given to your daughter?

She has an allergy to brown tape which was wrongly used to secure a draining tube on her leg post surgery (at RPAH) to replace her femur and kneecap. The nurses and doctors would not replace the Tape until the surgeon approved it. 2 days of pain and scarring left on upper thigh. I would like to mention that overall we have had very good service, treatment and developed friendships with staff and other families. 

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