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Showing posts from 2013

The Grace and Faith of a Child

Wow, Violet's 16th EUA.  That is a lot of under anesthesia procedures for such a little peanut who has just turned 3 years old. And, EUAs are only 1 of the things she has had  to go under anesthesia for. Violet's wish trip to Disneyland was the most amazing and joyous experience. But now, after just a few days back, we have had to snap right into the reality of the hospital again. Still, we are so grateful for the wonderful break we had. It was such a blessed time that we will never forget. ♥ Violet always amazes me with her strength and her resilience. It can't be easy for a child to go from being on cloud 9 at the Happiest Place on Earth and then quickly back into the hospital. It just shouldn't be, but this is her path, and she walks it so gracefully. As her parents, we pray each day that we can also walk it with such grace. It's not easy to do. Violet did tell us that she didn't want to do this today while we were in pre-op. Usually, the concern doesn

ERG, EUA, Hope and Believing in Miracles

The journey with Violet's left eye has been a lot of back and forth with feeling victorious, then more unknowns and a lot of uncertainty. At the very beginning of Violet's diagnosis with Retinoblastoma, after the specialist had carefully assessed the condition of her left eye, the size of the tumor and the proximity to the optic nerve, we were faced with the decision of fighting to save Violet's eye or removing it completely. Violet's first diagnosis was Unilateral Retinoblastoma, meaning it was found in only one eye. However, Violet was so young at just 7 months old, and so, there was a significant chance that her diagnosis would change to Bi-Lateral Retinoblastoma after time showed us more. With Bi-Lateral Retinoblastoma, there are many more risks.  Tumors could begin to pop up in her non-affected eye in the future and if we removed Violet's left eye she could have the chance of losing both.  We prayed over the  decision and then we took it to heart when the speci

Violet Brielle - Surviving Retinoblastoma

Violet has her next EUA this Wednesday, September 25th. We are awaiting details of our check-in time and hoping that it is an early one. They will also be performing an ERG while Violet is under anesthesia. This will be the very first time they have done this and we are praying for a miracle in her vision! We are so grateful for everyone that has been kindly following Violet's story and supporting us along the way. We will always continue to share here, but we would also like to invite you to Violet's official Facebook page that has been made public. We would love to have you all join us for more frequent updates, photos, information and prayer.  Here:  Violet Brielle - Surviving Retinoblastoma   Please feel free to share Violet's page as well! Thank you all so much for your prayers & love. 

Prayers Answered & a Wish Granted

Our sweet Violet is having an amazing summer. We were blessed to start it off with a perfect EUA showing no recurrence! Tears of joy every time. We are so grateful to God for His loving mercy and for His protection over our family. <3 The night before Violet's EUA, we kept her up late in hopes that she would sleep in the next morning as she had a late check-in time. Since she is not able to eat anything before, we wanted her to sleep through as much of the morning as she could. It worked. Violet didn't wake up until 10AM and we had just enough time to get her ready and head out for Seattle Children's Hospital. Violet played games, colored a few pictures and watched Mickey Mouse Clubhouse as we waited in the surgery center waiting area. She was doing really well with no food or drink. Unfortunately, Violet's ophthalmology team ran very behind on this day. We didn't get called back to begin the process of vitals and prep until a little over 2

EUA Wednesday the 19th

Violet has her next EUA this Wednesday the 19th. We just found out that she has an afternoon check-in which is never fun because she is not able to eat at all before the procedure. Please keep her in your prayers for another perfect exam with no recurrence, for safety during this procedure and for this to be as easy on her as possible. Thank you so much!

Awareness is Golden

This is the face that I fight for. A fire has been lit within my heart in recent months to connect with other families going through the battle of childhood cancer. I offer whatever I can ... Prayers, encouragement, information, Violet's survival story, handmade hats from our shop for their children ... anything that can help. I know that every act of kindness that you can get when your child is in treatment and in monitoring makes a world of difference. When Violet was diagnosed with cancer, a few very kind friends reached out to me and offered the contact information of other families they knew were going through the same with their children. At the time, I could not bring myself to contact these families. It was too much. I have so much empathy that when I talk to someone on the phone who has a cold I start to feel symptoms, so I just could not imagine taking on more than our own battle with cancer as it was overwhelming. I needed all of my strength to get my family th

World Retinoblastoma Awareness Week

This week is World Retinoblastoma Awareness Week. Early diagnosis is crucial to offer the best chances of saving a child's sight and life. In honor of our brave little fighter, we are re-posting our very first post so that you may understand how the majority of children are diagnosed ... by their parents noticing the signs first and fighting to have their child seen by a specialist. On Monday, July 18th, our sweet baby girl Violet was diagnosed with Retinoblastoma, a very rare form of pediatric cancer that develops in the retina of the eye. The doctors did not catch this. We did. We don't know exactly when Violet got this cancer but she was seen regularly after birth for her weekly appointments, her 2 month, 3 month and then was seen twice when she was 4 months old because she had a bad cold. At all appointments her eyes were looked at and nothing out of the ordinary was seen. I have read that in most cases of Retinoblastoma general practitioners do not catch this con

A Time to Celebrate

For the first time in a very long time I feel like we are beginning to live a normal-focused life together as a family. It is an amazing feeling and I am so grateful for it. The days of being in the hospital on a weekly basis gets smaller and smaller in the past behind us. I thank God for that every single day. We are no longer living with family. We have recently moved into a home of our own and we love it very much. And, although we are still in financial strain with all the catching up we have to do, it was time. Time for us to be together on our own, in our own space and to just feel settled. To be able to unpack things from our home in California that we haven't even seen in over 2 years ... it's a wonderful thing! I can never express fully how thankful we are for all the help we have received to get us to this point. And, it is so reassuring to know that we have such an amazing support system to help us get through the years to come with Violet's monitoring ap

Sweet Little Eyes

Violet had her last EUA (exam under anesthesia) in December and a follow up with her Oncologist in January. Both appointments had fantastic results! Violet has had no recurrence of cancer and she is exceeding all of her milestones, showing us that her chromosome 13 deletion is having no effects on her physical and mental learning abilities. Praise God with me! :) I say this often and it is with my whole heart, "We are so grateful!" As Violet gets older, it seems the hospital appointments are becoming increasingly difficult for her. It's really hard for Josh and I to see her get so upset and scared. At her last appointment, she screamed when they just went to take her blood pressure. That has never happened before. Violet is obviously starting to associate that one thing leads to the next part that she does not like. Thankfully, Violet is able to go 3 months before she needs to go through it all again. And, we are very hopeful that all will go well with her next EUA