Ivy-Mae: One Year Old Cancer Warrior
I recently introduced Ivy-Mae on my social media pages and her story was met with a whole lotta love. No surprise, as this brave little warrior at just One Year Old had overcome hurdles and hardships that noone should have to face in their lifetime. Ivy's Mum is bravely raising awareness for eye cancer and has shared their story with me:
"Ivy-Mae was 8 months old when we discovered the tumor. The first thing we noticed was the iris of her eye slowly changing colour, followed by a white glow in photos. Ivy also couldn’t really open her eye in the sun, she would always close that eye. After some doctors appointments here in our local town, we were rushed down immediately to Sydney Children’s Hospital (Westmead).
At that stage we were unaware what it was in Ivy’s eye. We underwent tests for the week (MRI, ultrasounds, blood tests). It took a whole team of doctors to work out what it was. Unfortunately we were given news no parent wants to hear - Ivy had a tumor in her eye and she needed to have her eye removed ASAP to save her life. At this stage we didn’t know if it was cancerous or not. The tumor itself was so close to the optic nerve, it needed to come out ASAP.
We prepped Ivy for surgery and the following day on the 27 November 2017 our worst nightmare came true...we kissed our baby girl to sleep and sang “you are my sunshine” quietly in her ear, knowing quite well that the next time we see her a part of our baby girl will be missing. It took over 4 hours from the start to Ivy waking up in recovery. The longest 4 hours of our lives. She then spent a further week down in Sydney, until we were allowed home.
It’s now 4 months down the track. We were given the news that Ivy had a rare cancerous tumor (epithelioma). There are only 30 cases known world wide. The symptoms Ivy was showing were the same symptoms as retinoblastoma. Ivy is doing really well, almost walking, saying Mum, Dad, Nan, Pop. At 14 months old our sweet little warrior princess is moving mountains and we are so so proud of her."
Tomorrow Ivy and her brave family venture back to Sydney for Ivy's prosthetic eye. Please keep them all in your thoughts and send your love, strength and positive vibes.
Gday Jamie-Lee and Ivy-Mae, just read about your daughter and her eye trauma in that’s life. I have only one working eye due to severe head trauma sixteen years ago when I was 33 years old. I have issues with balance and I have a head tilt cos I can see better that way. The reason why I wanted to write to you is to give you a head’s up on having only one eye. The truth is is that life does go on and your body is amazing at adapting to deficits. Because Ivy-Mae is young she has a head start cos she wouldn’t know anything else, her body would be adapting to her loss of vision in her right eye in a remarkable way. There are things though to watch out for and that is light sensitivity and I’m night blind but I don’t know if that is typical of having one eye. Balance is an issue but for me I really struggle with depth perception and I can’t see people walking with me if they are on my blind side. I know when I was getting therapy they would purposely walk on my blind side to encourage me to turn my head enough to see them. With depth perception I don’t really know what to do but there would have to be specific therapy to train your brain to reach further? I just want to encourage you and your family cos things might be harder visually speaking but the body is remarkable in adapting. Ivy-Mae could do anything she wants to do!! I really hope this gives you encouragement