Sy’s Story

Site created on June 23, 2021

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement.  On April 15th Sy had an eye injury, which led us to seeing his eye Dr. On April 16. We followed up weekly for several weeks and this just did not seem to be getting better. On June 1st we where sent to a specialist, where they started seeing some Red flags. After several more specialist appointments and imaging we where sent to see yet another specialist at the U of M.  On June 11 they did a sedated exam to get a better look at what he had going on and our worst fears where confirmed. Retinoblastoma at the highest stage.  After discussing with his Dr there, the decision was made that he needed to seek possible treatment at the world renowned clinic in Philadelphia, Wills Eye clinic. Here we met with Dr. Carol Shield and her team to come up with a plan to save Sy's Life.  We are devastated and heartbroken, but know with the guidance of our faith, family, friends and an amazing medical team, we can beat this, and we will for our sweet boy. 

Newest Update

Journal entry by Jessica Jansen

Another 6 months! 

Today we ventured down to the U of M and Lions eye clinic for another 6 month follow up. Mostly good news today. Sy had his MRI scans at the beginning of November due to some headaches he had been having. Thankfully that all came back clear, so today the oncologist reviewed that with us again. It was brought the the Minnesota Cancer Tumor Board meeting and reviewed by the team of specialists there, and they agreed that the scans looked good and there was no signs or evidence of anything concerning. The oncologist said Sy is healthy as can be and is in the 90% for both height and weight. If he continues on this path they estimate him being around 6'3"-4" as an adult 🤯 He is definitely growing like a weed. 
After meeting with the Oncologist we met with the Eye specialist to check out his socket and left (good) eye. The left eye continues to look healthy and is compensating for the other eye being gone so he is actually seeing at 20/15 vision which is better than perfect. I always wonder how he could see well enough to point things out while we are driving, and I guess now I know. However, in the socket she did see some abnormal looking scar tissue growing. She was not so concerned that this was cancer, but more so that this might be why he is struggling with his prosthetic. We will need to come back in 4 months instead of the original 6 we had planned. If it seems to be continuing to change or cause a problem at that time we will come up with a plan to take care of it. 
We discussed eyelid surgery again at this visit, and have decided we will leave it be for now. It does not bother him so we don't want to mess with it! We are grateful that things are still looking good and Sy it healthy.

Over all we are doing well. Unfortunately some sad news. One of Sys biggest supporters and companions during his cancer jouney Uncle Bob (Jessica's Uncle, Sy's great uncle) found out in January of 2022 that he had his own battle to fight. We unfortunately lost Uncle Bob 2 weeks ago. 😢 We are all heartbroken, but Sy is especially struggling with this loss. Please pray for his continued healing during the grieving process. 

Sy's Make-A-Wish was granted in August. I'm sure most who see Sy on a regular bases know about this as he talks about it A LOT! But he was granted a Fish house/Wheel house. We are so excited to hit the ice and catch some big ones this winter!

We hope you all have a magical holiday season. And find time to make memories with the people you love.

❤️Jessica 

For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. John 3:16

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