Our daughter, Alice was born with Ptosis in her right eye. Ptosis is a condition where her eye lid doesn't open as wide as her other eye. She had 6 monthly appointments with her Ophthalmologist in Brisbane. At these appointments, Alice's vision and eye responses were tested. Despite the eye condition, these were always within the normal range, even up until her routine appointment in April 2021. Her Ophthalmologist recommended surgery to correct the Ptosis which was due to be done before she starts school in 2023.
6 weeks after Alice's last routine Ophthalmology appointment, we noticed that her right eye was more closed than usual. This can happen if she is sick or tired. We monitored for a few days but I ended up taking her to the doctor to check for infection. None was found. When the symptom continued to get worse, I took her back a week later. They took another swab but I wasn't convinced. The following day, I took Alice to the Optometrist in Town A (where we lived at the time). He told me that Alice's vision was perfect but they couldn't get an accurate scan of her eye because it was too closed. We discussed private Ophthalmologists in Town B which was 1.5 hours north but none would see children. He told me that there is one at the local hospital and if I took Alice to the Emergency Department, they would have to see Alice. I took Alice and her little brother straight there. The Optometrist was mistaken however. There was no Ophthalmologist there. A doctor saw her and couldn't see anything wrong but asked the head of trauma to review her. He could tell that the muscle had weakened in her eye and related it to a sore muscle, similar to what would happen after a tough gym workout and that it should improve with time. At the time I was so thankful that they took the time to observe our little girl.
A day later, I didn't feel right. I made an emergency appointment with Alice's normal Ophthalmologist in Brisbane, 7 hours away. The original Dr called after that and said that Alice had 3 different infections and to start eye drops and antibiotics. The weekend passed and we considered not going to Brisbane and to wait to see if the new medications worked. Thank goodness I made the drive down though.
Alice's appointment was Monday afternoon and after a few extra scans than usual and a couple of house of tests, the Ophthalmologist told me that the scans were irregular and align with signs of a weird word, starting with r. She told me that she was calling the Children's Hospital and that they would be expecting Alice in the Emergency Department. We arrived late in the afternoon and by 7:30pm Alice was put under a general anaesthetic for a MRI and CT of her eye. Half an hour later, her Ophthalmologist calls me and says they found a mass and that she was on her way to the hospital to do surgery and take a biopsy of what they found. The hospital called to ask for permission to extend the MRI and CT to Alice's brain, neck, chest, abdomen, legs and arms. At 12.30am, Alice's Ophthalmologist came out to see me, give me a hug and tell me that we were on the conveyer belt now and to not get off. It would be a long road to recovery. I went in to hug my baby, with her eye bandaged up. After the biopsy, Alice’s vision had decreased so much that she was legally blind. In 7 days, her vision in her right eye had gone from perfect to legally blind! This type of tumour is so fast growing.
At 1:30am the Oncologist came to the ward to introduce himself and that he wanted to wait for biopsy results before we talked more. He visited again the next night and then the next, he took us to his office. What they found was a soft tissue tumour, called Rhabdomyosarcoma. Our daughter has Cancer.
10 months on, Alice has had 30 rounds of Radiation, 28 weeks of weekly Chemotherapy, test after test, scan after scan, needle after needle and multiple surgeries. However, because the tumour is wrapped around her Optic Nerve, it is too risky to surgically remove it. Today, Alice still has regular scans, blood tests and side effects from her treatment while we wait to see if the tumour will continue to shrink, but she is such a ray of sunshine. We and her 3 brothers love her beyond measure.