written by her mother, Randi
For the first two years of Harmonee’s life in Dassel, Minnesota, she was the picture of health. She met all of her milestones and had a healthy exam at every well check. She had a thorough two year check in July of 2024 and there were absolutely no concerns. However, that all changed just a few months later.
At the beginning of October, we noticed a small white spot in Harmonee’s eye. It was only visible at certain angles and lights. It was odd, but small and infrequent so we didn’t think much of it. We assumed it was just a strange reflection. We covered the eye that did not have the spot to “test” if there were any obvious visual concerns. Harmonee didn’t seem to have any difficulty seeing. But, to be safe, we made an appointment with our local optometrist in Minnesota. The earliest appointment we could get was not until November 13th.
As the weeks went on while we waited for our appointment, the small white spot began to take over her entire pupil. The expansion was sudden and significant, and we could now see it at all times. When looking at her, it appeared that you could see directly into the back of her eye. We began to research what this strange glow or “white pupil” could be a sign of. That is when we first heard of Retinoblastoma, cancer of the eye. We then decided we needed to get her in sooner as, in our hearts, we knew this is what our baby was experiencing. After explaining our concerns to the optometrist we were told to bring her in that very day. It was now November 1st.
The optometrist did not dilate Harmonee’s eye, but did a thorough exam. Scott Glaser, O.D. of Southwest Eye in Hutchinson, MN believed she may be developing a cataract and referred us to an eye specialist at Northwest Eye in Woodbury MN. A few days later we saw Catherine Origlieri, M.D.who said that she did not have a cataract but would need to be immediately seen by a retinal specialist to determine the cause of her glow. We went that same day to Peter J. Belin, M.D. at Retina Consults Of Minnesota in Woodbury, MN who dilated her eye and did many tests. The specialist told us what we had already feared. He believed that Harmonee had Retinoblastoma. She would need to be seen at the Minnesota Lions Children’s Eye Clinic and the University of Minnesota Masonic Children’s Hospital where she could have an exam under anesthesia (EUA) to determine exactly the cause and severity of the diagnosis.
Once at Masonic Children’s, we were greeted by Dr. Jill Anderson. Dr. Anderson administered an MRI and an EUA. On November 5th, just 4 days after our initial visit with the optometrist, we received the answers to all our questions. Our beautiful baby girl was diagnosed with stage E Unilateral Retinoblastoma. In the short few weeks, she had completely lost vision in her eye. The cancer was aggressive and extensive. She needed immediate enucleation (removal of the eye). Harmonee was put on the surgery schedule for the next available slot. Everything moved very quickly. We were scared and in shock, but were given so much support and information by our daughter’s amazing care team and wonderful doctor. We were scheduled for surgery the following week. During that time, Harmonee began to express discomfort in her eye as the pressure of the developing tumor was great.
On November 11th, 2024, Harmonee had surgery to remove her right eye. She did well with surgery and was immediately relieved of her pain. About a week later we received her pathology test results. Her tumor was large, 40mm wide and 19mm thick. It was less than 1 mm away from expanding beyond the optic nerve at the time of surgery but fortunately ,it was discovered in time and all of the cancer was removed with the eye!
Harmonee has rebounded wonderfully from surgery. She is back to her bubbly, happy, two year old self! She will be under close monitoring going forward to be sure her cancer stays away. She will have an MRI and EUA every 6 months until the age of 5.
We feel very fortunate to have all the love, support and knowledge from everyone that we have encountered along this journey. We have shared our daughter’s story with many and continue to share in hopes that other parents know of this and are aware that this is a very real thing and can happen to anyone. We will continue to raise awareness for Retinoblastoma for the rest of our lives.
We are thrilled to have our amazing girl and are grateful it was just her eye that we lost. We will instill in our daughter that she can achieve anything in life that she strives for. Despite any obstacle, she is beautiful, she is resilient and she is a true warrior!
