Easton’s Story

Site created on February 23, 2020

A few months back I decided to schedule an eye appointment for Easton that was set for this past Thursday. We had noticed some pulling towards his nose and thought that he may need glasses or had a lazy eye that would possibly need surgery to correct. When we got back to the room they ran an eye exam and started talking to me about him borderline needing glasses but that we may be able to wait due to his age and sometimes time will fix the pulling that we were seeing. I could hear the nurse on the outside of the door speaking with the doctor as she discussed what she saw on the exam. The doctor came in and introduced herself and asked if I would be okay with her running one more test to "just in case rule out some other things that it could possibly be". She at that time, ran 2 additional tests. She began explaining to me that she saw numerous tumors in the back of both of Easton's eyes and told me what she thought it could be...Retinoblastoma. Retinoblastoma is a rare childhood cancer that statistically only 1 in 1 million children usually get. Depending on the severity it will cause blindness, possibly spread to the spine/brain, and can cause death if not treated. She asked if we would be able to travel to Chicago the next morning to visit with a cancer/retinal specialist to have them confirm what she thought she saw. We met with Dr. Shapiro yesterday and heard the words that no parents want to hear. He confirmed and diagnosed him with Retinoblastoma and explained to us that we will need to begin with chemotherapy radiation for a year at minimum. He told us that we would be in Chicago every week to 2 weeks in the beginning and then would be going every month depending on how his body would handle the treatment. If his body didn't react to the chemo, they would do eye injections and consider doing surgery which if it came to that, he would lose vision. He will be going in for testing on Tuesday at 5am to determine how far this has spread and how aggressive it is. He will be put under anesthesia and will be doing an MRI and some additional tests. We are meeting with an oncologist to discuss chemo on Tuesday and what the next steps will be however, I know a God that can heal this little boys body. When we dedicated Easton to the Lord we prayed for God to use his life for His glory. We know this is going to be an amazing testimony of God's faithfulness in the end. We ask that you keep our family and Easton in your prayers at this time. God has never failed us and we are believing for a miraculous outcome.

Newest Update

Journal entry by Andrea Nave

Hello Everyone!

I know its been quite awhile since I've posted on here but honestly, life has just been plain busy and we have been soaking up all the family time this quarantine. A lot has happened since the last time I've updated. Easton has made some big strides in his motor skills and development over the past 2 months. He has advanced his vocabulary with quite a few new words and is now a walking man. He starts his days with full sentences that only he understands and the biggest giggles. He's the worlds best snuggler and can become the happiest kid when given his blanket. These past few months have been a time of growth for him. He has faced some big challenges in the last few rounds but we are so proud of the developments he has made. 

This week is round 8 for him. He was put under anesthesia yesterday and had his chemo eye injections. So far, its been a little bit more challenging this time than in times past. In his last round, Dr. Brennan(his oncologist) and her team said he was making great progress and that there may be a chance that they would only have to do injections in one eye this time however, they saw it fit yesterday to do it in both. There is still a tumor sitting on his optic nerve in his left eye that they are concerned about and continue to monitor closely. They are continuously looking for a window of opportunity to laser if it removes far enough off of the optic nerve to do so. BUT, we are still seeing slow, consistent progress with the tumors shrinking and have not seen any concerns with his vision that we can tell which is a miracle in itself! We continue to wait for the complete healing but for now, we are thankful for the mini miracles that we are experiencing throughout this season. 

He has unfortunately experienced quite a bit of nausea this time and large amounts of anxiety with his eyes being swollen shut. At this point, we are just trying to make him feel as comfortable as possible. He has been wanting a constant shoulder to lay on or hand on his back to know he's not alone since he's unable to see so we have all been taking a shift of holding, walking, snugging and constantly reassuring that he's going to be alright.

We are currently in the hospital doing his day 3 of 5 chemo. They were able to give him a larger dose of Morphine and some Ativan for his anxiety. He also gets 4 other medications every day of chemo to help with his nausea. Due to his pain, we are administering Morphine every 4 hours. He has not eaten since Tuesday and everything he drinks he has thrown up. They are sending him home on fluids tonight to make sure he's staying hydrated and will reevaluate him tomorrow. If we don't see any improvement, they are considering admitting him. 

Overall, he is taking it like a champ. He has not had much strength to even lift his head but woke up this morning chatting and trying to play which lasted for about 5 minutes until he wanted to lay back down. Please continue to keep him in your prayers as he finishes up his chemo the next 2 days. 
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