Hi, I don't know where to begin......... so here I go.
My youngest daughter was diagnosed with a brain tumour just two days before her second birthday.
Last Feb 2024 I noticed her behaviour changing from being happy healthy to not playing, refusing food and vomiting in the morning. I took her to many GPs and emergency to be turned away and saying she had the flu or other non-related illnesses, I was let down by many 'experts' who i looked up to and begged them to help. My daughter was changing right before my eyes, and no one believed me. I was broken for 4 weeks, not sleeping, always watching over her. Then a few days before the worst happen, her eye turned inwards. I rushed her to an eye specialist privately, who referred us to another private doctor. Thank GOD! I followed my heart. That specialist advised us to go straight back to hospital immediately.
We rushed my youngest to hospital to be told that she was fine and nothing wrong. I collapsed. I couldn't believe what they were saying. Lucky the private doctor pushed for an MRI. Finally, after 24hrs more of waiting and incompetence of the hospital doctors telling us nothing was wrong, The MRI showed a 4.5cm Tumour in her brain end of stage 1 cancer! I was angry, I wanted to scream! all this time! 4 weeks of feeding my daughter antibiotics, getting told it was teething or virus, to turn out to be CANCER!
Her surgery was 10hours later, after the MRI results..... They wanted me to go home and leave my husband at hospital with my youngest! How CRAZZY? What parent could do this?
I was in NO right to leave my daughter or family! I had to fight for her life, advocate every day for 1month to be heard! Her surgery happened two days before her 2nd birthday. Her surgery lasted what seemed like a lifetime (9.5hrs). She lost the ability to walk, run and jump due to ataxia. We were warned about her loss of speech; however, she woke up and her speech was normal. She took about 3 weeks to regain her physical ability. It's been a year, and she's under monitoring through MRIs but I have a fear in my stomach everyday...... What happens if it returns? Some days I can't eat or think. I just lay on the bed and cry. Noone believed me. Noone saw what I did, I felt alone when I needed loved ones. I am constantly scared. I know she is the one who fought and survived but I feel like the cancer has attached itself to me. I can't see it but I can feel all the emotions constantly and I am scared for her and my family.
This fear has taken over me, I struggle to move beyond it. I have lost trust in many medical professionals.
All I know is, keep advocating for your children, we are their voices of reason.
