Two years ago we were one round of treatment away from the end. We spent the day jumping in puddles, enjoying our last day of normal (well as normal as life can be with an oncology child). We watched the Meg and ate pizza (sissy girls fave). She refused to eat. We noticed a huge lump under her belly button and decided we probably shouldn’t ignore it. She had been off for a while now, constantly crying and unhappy, getting really skinny, her eyes were jaundice, holding her liver area and saying ouch! But the doctors told us she was fine it was just the treatment causing this. We asked for scans they refused- even though her last lot of routine scans 4 months ago had shown something that they just put down to “fluid” in her liver.
Usually going to hospital in the middle of the night id go alone but I knew I needed loz to come this time. After trying to determine if her eyes had gone yellow for a few days I knew deep down it wasn’t good. She was so skinny and her belly even bigger with huge veins showing. We got my brother down to babysit and told him not to tell anyone and went to the hospital- praying it was just a hernia praying it was something simple- knowing in our heart it wasn’t. After blood tests, X-rays and emergency ct scans in the middle of the night we finally got a room on the ward at 2am- which was the room our beautiful little friend passed in a month before, I knew, I knew that was a sign. I asked to change rooms and the nurses of course arranged it. I was already super anxious over our little friends death which I think is why the doctors didn’t take my concerns seriously earlier- that I was overreacting because of what happened because they failed her as well.
We were both allowed to stay and wait to see the oncologist in the morning. The longest bloody wait of my life! By then I knew exactly what our plan was we would fight with everything we could. Even though the oncologist said we were cruel for wanting to fight (very easy to say on the other side of things)
I had done more research in those few hours than I had since she was diagnosed. Sure enough we got the words that was worse than your child has cancer - ”The cancer has progressed and there is no chance of cure” of course I wasn’t taking that. I didn’t care what the odds say we still wanted to fight, we couldn’t imagine life without her. We were told there is no treatment options, but there were trials- that’s the point of trials right? They don’t know if they will cure that’s why they are a trial, so what do we have to loose. The cancer had spread everywhere, her pelvis, abdomen, liver, lungs, bowel, kidney and later that week we found out also in her bone marrow. Unfortunately the disease had progressed so much her liver was shutting down- to be eligible for a trial you must have good liver function so before she could we needed to try and kill some disease. Again told there was no treatment options for her I gave them three different chemo combinations that others all over the world had success with.
We got sent home for a few days before coming back and starting treatment that we really had to push for. We did everything we could. We pushed turmeric juice through her ng tube and didn’t let her eat anything that wasn’t a “cancer killer superfood” we used essential oils, cbd oil, and some magic water stuff. Literally almost everything I could find minus the animal worming tablets that some adults take to kill their tumours.
I can still feel this day. It’s surreal. To be told your child is going to die it’s the most surreal feeling. It’s unexplainable. Trust me I imagined it when we lost our dear little friend- it’s truly nothing like you’d imagine. I was always so positive that she would make it through- I wasn’t about to start thinking or believing the worst. Law of attraction and all right?
This is childhood cancer!
