Our daughters journey navigating Cancer
Posted by Rebecca Mercker on
Last year our family received some of the hardest news that saved our daughters life.
It was at her 10 month wellness check up, I had both girls with me and we were barely making it through the appointment itself. Just a normal appointment every baby has to do.
Isabella was starting to walk, Rosemary wanted to see and touch everything our doctor was just trying to discuss how everything has been. It was fast and almost over. Our Dr, said one more quick test before we go, just real quick.
She pulled out her pen light and flashed Isabella's eyes. She stopped, did it again. She said hold on, and went outside.
I'd love to say I knew something was wrong immediately. That my mothers instinct kicked in and we full stopped everything. But the rush of that day, now burned into my memory, just didn't go that way.
Our doctor came back with a referral to an Ophthalmologist and a little concerned I asked how serious this was? This is when things started making me question everything. Our doctor said "It could be nothing and everything is fine, or it could be life threatening. I would get in as soon as possible to be sure."
So I waited the mandatory 3 days before calling the place she had sent the referral too. They saw the referral but refused to see us because our daughter didn't have a diagnosis. I was so frustrated going back and forth with our daughters Dr. trying to find someone who would see us. At 10 months you need a pediatric Ophthalmologist and in our area one medical system dominates the whole area. Finally after two weeks and a scheduling error we got in to see the pediatric Ophthalmologist.
It was my husband, my youngest daughter and I. We went in fully expecting to hear that everything was okay. We did not expect a long appointment or to be told we were saved for last as a precaution. We did not realize they would need to dilate her eyes setting the appointment back a bit.
We were not prepared.
The Ophthalmologist drew me a picture. She said this is her eye, this is her retina and this is the tumor that I see. Tumor? I thought. I spoke out loud "She has a tumor? She has cancer?" The feeling was immediate. She can't have cancer. She's not even a year old?! Her response was that they could not diagnose her there but she could send us to get an official diagnosis and treatment. She said there were 3 options it could be but she wanted it confirmed first. She got on the phone right there in the room to a specialist.
I googled all about those 3 conditions, My mom and I dug up every bit of information we could find and which one it was likely to be. Before we ever saw the specialist we knew as much as one could find on Retinoblastoma,somehow being both rare and also one of the most common forms of pediatric cancer. Retinoblastoma makes up about 2% of all childhood cancer.
We learned how incredibly lucky we were to have even found it as Isabella showed absolutely no signs without a doctor looking, even with her tumor being so large.
The ophthalmologist had sent us straight to Miami. We saw her on Thursday of one week and we were meeting the specialist treating Retinoblastoma at Bascolm palmer eye institute on Friday the next week. Her first Chemo was a few days after that.
Since then Isabella has visited Miami 9x in the last year. She has had 9 Exams under anesthesia (EUA) and 3 chemo treatments. She was found to have Bilateral Retinoblastoma. Genetic.
The original tumor has been dormant for almost 1 year now post chemo, but she continues to have exams and will do so for the next 3 to 4 years slowly spreading out over time. MRI's, EUA's, Patching her unaffected eye to strengthen her non-seeing eye, regular eye appointments in Gainesville (Closest to where we live) every 3-6 months and Miami every 3 months (Where she is treated at one of the few places that offers IAC in the United states).
We are asking for any help with paying for the follow up visits and paying for the previous procedures she has had to undergo. Unfortunately our insurance does not cover it all upfront and even though Retinoblastoma is life threatening if left untreated we were informed that any form of treatment was considered optional because other options exist.
Any donation would be appreciated. We were so caught up in getting her the treatment she needed that we never even thought to ask for help last year. If you can't donate we understand, there is no expectation, just hope that we might be able to get some relief from the endless bills and expenses that have grown in this last year and continue to grow.
Follow the link below to contribute to Isabella's journey:
Thank you so much!
The Mercker family
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