Violet Brielle Spataro

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 s...

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...

Last Wednesday, Violet had her EUA (exam under anesthesia). We had a 12:30 check in time which is a later time than we like because Violet cannot eat anything before her procedure. Then, it turned out that the surgery before hers ran late, so she was not taken back to start until just after 4pm. Poor little girl went all day without being able to eat. We were obviously not happy, but there was nothing we could do. We just did everything we could to keep her occupied and distracted as much as possible. She handled it all very well up until the last hour or so and then she was having a hard time. After her EUA we were told everything looked as good as they had expected. No new tumors and the much regressed tumor in her left eye is still on the optic nerve, but it is inactive. Both her oncologist and ophthalmologist agree that no more chemotherapy will be done after this month. Violet has her next EUA scheduled for the first week in February to monitor. The next day, my mom and I too...

Last week on Wednesday Violet had her EUA (exam under anesthesia) to see how the remaining tumor in her left eye looked and to determine from that if Violet would need additional rounds of chemotherapy. Just 3 days before this, we had Violet's 1st birthday party. It was a great day and I will make sure to tell you all about it in a separate post. When the night was winding down Josh and I began to scan through the photos on our camera and we noticed that not only was the white "glow" coming from Violet's left eye (where we know tumor is remaining) but it was also showing up in her right eye. It hit us right in the stomach because we know this is an indication of a tumor. At the time, we had family over and so we tried to not let it ruin our night but it was very hard. Josh and I prayed so much that night. Having another tumor come back that quickly and while going through chemotherapy would be very disheartening. Even though we know that with Bilateral Retinoblast...

Last Wednesday Violet had another exam under anesthesia to see if the tumor in her left eye had shrunk and if it had possibly come off of her optic nerve so that it could be treated with a laser. Well, we received news that day that we didn't even know was possible. The tumor did not shrink and it did not come off of her optic nerve but the tumor was now inactive! We were caught off guard and wanted to know what this meant in terms of the cancer and future treatment. We got some answers from Violet's ophthalmologist that day but the bulk of the explanation came the next day from Violet's oncologist. First we were told that the tumor was dead. Great! Praise God! We later heard additional details that are still of concern. First, the tumor has a "grey" area around it that indicates cells are not dead but dying. We had been told Wednesday that she would likely only have 1 more round of chemotherapy but then on Thursday when we were told of this grey area, we we...

The last 3 weeks have been a bit of a roller coaster regarding Violet's ANC. One week after Violet's 3rd round of chemotherapy her ANC dropped way down to only 100. Then, last Thursday it climbed to 1900! That was a very happy day! Yesterday it was back down to 384. (For those of you who are new to Violet's story please see this previous post  HERE  for an explanation of ANC.) We knew that even with the Neulasta injection (an injection used to lower the chance of getting an infection by increasing white blood cells in the bone marrow) her count would most likely go down before it came up, but we thought once it went up that it would stay up until the next round of chemotherapy. Unfortunately, Violet's system reacted against the norm. I do want to make sure that I mention Violet did so well in tolerating the effects of the Neulasta injection. Prayers were definitely answered! We were both amazed and very happy at how strong she was and how it seemed that her discomfo...

On Thursday my Mom and I took Violet to the hospital for her labs, doctor appointment and chemotherapy. While we were in the waiting room after her blood draw, we were approached by hospital staff wanting to know if Violet had been enrolled in the Beads of Courage  program. I let her know that I wanted to enroll Violet and that I had sent them an email but hadn't heard back yet. She then told us that they had a photographer there and they wanted to know if Violet could be in a little photo shoot receiving her first beads. The hospital wanted to use these photos of Violet for promotion of the program! I agreed and they took us to a room where they had the beads all set up, the photographer ready to go and representatives from the hospital/program. I put Violet up on the hospital bed and they began to ask me which procedures Violet had gone through so that they could give her all the beads that she had earned. She held up her bead packages for everyone in the room to see. It was so...

The day after Violet's exam under anesthesia she was scheduled to begin her next round of chemotherapy. My mom and I went to her scheduled appointment which has always gone like this: labs, appointment with her oncologist and then the chemotherapy infusion. On this day, we were told during her appointment that her ANC had not come up from the previous week so unfortunately, Violet's chemotherapy had to be postponed. Her ANC was in the 400 range and it needs to be over 700 to begin chemotherapy. I was disappointed that there would be a delay in her treatment, but grateful that Violet could get a couple days of downtime before her next appointment. And, this meant that we could go home now and she would get more playtime with grandma! We had a visit over the weekend with my step-mom and my sister from California and it was much needed family time! It was wonderful to watch Violet enjoying more playtime, love and hugs. We were definitely showered with many blessings from them ...