Thoughts of a 14-year-old living with cancer

Blog post – August 23, 2014

Yesterday, Erin appeared to have given up. She told me to take her to the hospital to put a catheter put in and give her drugs so she never has to get up again. What does a mum say to that?

Well, this mum here “lost the plot”. Instead of trying to offer encouraging words, I became angry, I was frightened. I won’t go into detail of everything I said, but at one point I said, “Well I give up too, I’ve had enough, we were meant to be a team, but you seem to be opting out”. I walked out the room for a minute (after seeing a shocked look in Erin’s eyes).

I felt horrible, how could I have spoken to my little girl in that way? I was frightened of losing her. Erin was telling me she wanted her life to end, she wanted me to take everything away. After following many children on social media who suffered the cruelty of DIPG, Erin was frightened. She didn’t want to go through this. I went back into the room in tears, saying how sorry I was. I shared with Erin how frightened I was. We lay in bed together cuddling and reinforcing our ‘Pinky Promise’. Erin promised me she would continue to fight for herself, not just me. Later when I was lying in bed with Erin as she was going to sleep, out of the blue, she said this…

“Mum I will fight and I will win, and when all this is done, I will make sure no other child goes through this, I mean that”

Update on Erin’s health.

  • Erin’s consultant says there no imminent threat to Erin’s life
  • Erin will commence Avastin on Wednesday in the hope it will help with radiation damage
  • OT services & Rehab starts on Monday following which Erin will return to Adelaide Exercise Physiology
  • Erin will start a new experimental drug to attack the tumor in the very near future
  • As far as we know, Erin’s DIPG tumor is stable, her troubles are treatment related
  • So we are putting Erin’s negative outburst yesterday down to ‘having a bad day’
  • In all honesty, I find it remarkable that Erin has only felt like this once during her 30-month battle

Can I ask that people keep comments as encouraging as possible, Erin manages this page and sees them all. Erin is fully aware of her diagnosis and accepts she is battling an incurable tumor, but comments which refer to (making memories) or (accepting it) are not well received by Erin or me.

Erin is “LIVING WITH CANCER”, and I think she has proven that xxxx

Erin's thoughts one week before she died of DIPG

Erin was hospitalised for the last time on August 24, 2014. She died one week later at 12.50am on September 1, 2014, less than an hour into International Childhood Cancer Awareness Month.

Erin didn't want to die, she fought hard until the very end

“As a kid, I shouldn’t have to think about dying, or even myself dying”, Erin