Fight for Emma
Hooray!
Slight setback
Thank you!
Amazing!
Updates!! Warning it’s long and random
MRI/ spinal tap/ eye exam
Optamologist/ oncologist update
Follow up
Merry Christmas!
Heading home!
Just waiting!
Just waiting!
My 3:30 wake up!
My 3:30 wake up!
Recovery with Mommy
Fight for Emma
Hooray!
Slight setback
Thank you!
Amazing!
Updates!! Warning it’s long and random
MRI/ spinal tap/ eye exam
Optamologist/ oncologist update
Follow up
Merry Christmas!
Heading home!
Just waiting!
Just waiting!
My 3:30 wake up!
My 3:30 wake up!
Recovery with Mommy
Overview

Fight for Emma

Here is a little history: Back at Emma's 12 month well- visit at the pediatrician, he notice that she may have a "lazy eye" and her eyes were not in perfect line. He told us simple glasses or patch before the age of 2 would solve her problem! He gave a referral for a pediatric ophthalmologist and we were on our way. I called the moment I got home to get her an appointment. It took us almost 6 months to get an appointment with the specialist (and yes I took the first possible appointment).

Fast forward to Friday December 14, 2018- we had the appointment with the ophthalmologist-- within moments of dilating and examining her eyes, he told us that Emma has a cancerous tumor (retinoblastoma) in her right eye with the 100% retina detached, meaning she has zero vision in this eye. He also told us most likely Emma is going to lose her right eye. The doctor immediately got on his phone and started making calls to get us the treatment Emma needed. There is no doctor in the Buffalo area to treat this type of tumor- so we knew travel was going to be involved. Friday night the ophthalmologist called me to tell me to go to the Cleveland Clinic in Ohio to see one of the best eye tumor doctors.

On Tuesday (12/18/18) we headed to the Cleveland Clinic to meet with an eye cancer expert. Emma was given a normal eye exam, ultrasound, and other vision screenings- confirming that it is retinoblastoma and possibly a small tumor on the left eye. He believes the left eye is extremely strong and healthy making it possible to laser/ freeze the tumor. The right eye on the other hand will need to be removed.

On Friday Dec. 21, Emma will evaluated under anasthesia and have an MRI. After the MRI, they will take her up and remove the eye and prep it for the prosthetic eye. We will not know until Friday if the cancer has spread outside of the eye to the optic nerve, brain, or bone marrow. If a single cell has gotten out of the eye, chemotherapy will be needed. This means for 6 straight months, once a week, we will be traveling to the Cleveland Clinic for treatment.

Thankfully, we learned her cancer has a high rate of survival (~97%), and Emma will be treated by world-expert doctors. Treatment is quite advanced, and the hope is that chemotherapy can be delivered with a femoral line to the directly beyond her eye if needed.

We will travel to Cleveland every couple week intially for treatments, assuming all goes as we hope. The oncologist we met with said he "expects" Emma to grow up and be happy and healthy and cancer free. We are going to do our part on the happy and healthy, and hold her doctors to theirs. In the meantime, we are going to try and hope that we can avoid chemotherapy. ALL thoughts/ prayers/ good vibes are welcomed!

We have received so much love and support already, and everyone asks us what they can do. We wanted to create a way for you to stay informed about how Emma is doing, and to channel your generosity and kindness in ways we'd appreciate. I will do my best to post updates to keep all of aboard our journey informed!

Comment on this Story

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PB

Patricia Batten on June 15th, 2019

Prayers work - never stop and what wonderful news for sweet little Emma!

PB

Patricia Batten on April 07th, 2019

Keeping Emma and Jason and Jess in our prayers, always!

PB

Patricia Batten on March 20th, 2019

God is good, all the time. All the time, God is good - just have to believe.

PB

Patricia Batten on March 08th, 2019

What wonderful news and she is such a beautiful little lady! Thank you for sharing the update!

DS

Danielle Sorokes on January 02nd, 2019

Be strong Emma, Jess, and Jason. The Sorokes family is praying for fast healing.

CH

Caitlin Heitzenrater on December 25th, 2018

Merry Christmas Emma you look so beautiful in your Christmas dress!!❤️

PB

Patricia Batten on December 21st, 2018

Sweet baby girl and what a big day for her. Keeping you all, and the medical staff, in our hearts and prayers - every moment!

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