It's August 17th which, in our house, we call "Diagnosis Day."
Back on August 17, 2005, our daughter was diagnosed with a rare and aggressive pediatric eye cancer: retinoblastoma. It's now 2017 and she is a 12 year survivor of retinoblastoma, and we honor this day as the one that changed our lives. Today, we honor Diagnosis Day; tomorrow, we celebrate "Survivor Day" (caaaake and ice cream!).
Given all that is going on in our world, it's easy to get caught up in all the sadness and heartbreak and anger. Believe us, we felt that so explicitly on the day our child was diagnosed with cancer. Today, Diagnosis Day, especially, gives me hope. We never thought anything would be better on the other side. We never thought we would get through it. We never imagined a day when we would stop crying.
Today, it's a nice reminder that we all go through wicked and evil times. And, with community and support and facing the fear, there is some good that happens at the end.
Twelve years ago, Jorge wrote this email to friends and family (this was before Facebook and Twitter and all that jazz). We thank God every day for Joli and her team of doctors. And, we thank God for all of you who supported our family during those rough times.
While the email, and her announcement of cancer, was sad, I'm grateful to read it on a day like today. It gives me hope. It gives me courage. It gives me faith that things will fall on the good side of humanity.
Happy Diagnosis Day, Joli!
WRITTEN ON AUGUST 19, 2005 (two days after diagnosis) BY JORGE:
So, in the last 48 hours a lot has happened in our little family.
My daughter's decided to become the world's smallest and cutest pirate... complete with eye patch. :)
We have spoken to or emailed many of you personally, but for those who may not know the whole story, here's what happened...
On Wednesday we took Joli in for what we thought was going to be a routine visit to the doctor. My father-in-law, who's an ophthalmologist, had noticed that Joli's right occasionally would "wander". He said it was pretty normal for kids her age to experience that, but he recommended that we go see a pediatric ophthalmologist and learn how to correct it as early as possible. So, Wednesday morning we went to the doctor believing that, at worst, Joli might have a lazy eye. No big deal.
When the doctor looked into Joli's right eye, his reaction was pretty immediate. He let us know that there was a large tumor growing inside of Joli's right eyeball. Yet, Liza and I had no way of knowing. That may seem impossible, but it's true. The doctor said it's quite normal for something so dramatic to go unnoticed because kids bodies are so adaptable. Apparently, as Joli's right eye faded, her left eye with its perfect vision took over.
Liza and I were floored. But, things got even more surreal when the doctor told us that he was certain that Joli's right eye needed to be removed as soon as possible.
She has a very rare type of cancer called "retinoblastoma". It occurs in about 1 in 20,000 kids.
Liza and I, on cue, fell apart. We took a breath and then fell apart again.
And then amazing things started happening... the doctor made a call to Massachusetts Eye and Ear Medical and got a hold of a guy named Dr. Mukai. It turns out that there are only five or six doctors in the entire country who specialize in this type of cancer and one of the best, Dr. Mukai, worked a few blocks away from us. Though he had two surgeries scheduled for that day, he made time, in between surgeries, to meet with us and examine Joli's eyes. He confirmed the previous doctor's diagnosis-- Joli's eye needed to be removed to eliminate the risk of the cancer spreading.
[insert me and Liza falling apart again here]
Dr. Mukai was incredibly sensitive and comforted us with his words and his knowledge. Apparently, in 90% of cases, when there is tumorous material in only ONE eye, if the eye is removed, the child will have a full recovery without the cancer reappearing and without chemotherapy or radiation treatments.
The next day, Liza Joli and I, surrounded by our families and the thoughts and prayers of friends and family all over the country returned to the hospital to have Joli's eye surgically removed.
The operation took a little over five hours and when Dr. Mukai re-emerged, the news was good.
There is no cancer in Joli's left eye and the right eye was successfully removed.
Liza and I fell apart again, but this time it was a good kind of disassembly. :)
When we went down to the recovery room, Joli was groggy and crying. Liza picked her up and she stopped crying immediately, curled up in her lap, and fell asleep. A few minutes later we were able to leave recovery and head up to her room, where the rest of the family was waiting.
And here's another amazing part... as we left recovery, Joli lifted her groggy little headed, looked over at the nurse's station and waved. "Thank you. Thank you. Bye-bye," she said.
My kid ... rocks.
We spent a few hours up in her hospital room, letting the anaesthesia wear off. There was lots of laughing and lots love in the room. Joli talked to everyone, but only wanted to be held by mom and fed juice by dad. ;)
So, we returned home last night. Joli slept in bed with us, occasionally complaining that her patched eye was "itchy", but then quickly falling back to sleep and snoring.
We think the worst is over. We'll be going back to the doctor today for some follow-up and Joli will have an MRI next week to verify that there is no cancer in other parts of the body.
The healing process takes 6-8 weeks and, after it's complete, Joli will be fitted with a prosthetic eye created by one of the best teams in the country. Liza and I have seen tons of pictures of other kids who've been fitted with fake eyes and it's friggin' incredible. You simply can't tell that the eye is fake. It even moves like a normal eye.
So, by the time many of you see Joli next, you won't be able to tell what occurred. :)
Friends, Liza and I want to thank you for your thoughts and your prayers. We were both overwhelmed to learn that so many of you were thinking of us these last few days. I sincerely believe that those thoughts and prayers made a difference. I sincerely believe that you played a part in our daughter's well being and we thank you so much for that.
The last 48 hours sort of stunk like ... , but the next few days are already smelling like roses. :)
Love-- Jorge, Liza and Joli