Violet Brielle Spataro

On December 6th, 2011, our sweet Violet Brielle turned one year old! This little girl has been through so much in the last few months, so we were extremely excited to have a day of celebration and fun with our family here in Washington (and 2 very special family members even flew in from CA to be here!). We had Violet's first birthday party on Sunday, December 4th at our apartment building in the 6th floor lounge. It was a great day and Violet had so much fun! Here are a few photos of the special day ... Pretty fresh flowers surrounded by sprinkles of paper violets  Handmade decorations for our owl theme (Look Whoooo's Turning One!) Birthday cupcakes Violet's first birthday cake Happy Daddy & Violet The party room Happy Grandma & Violet Playing with her butterfly shoes ... Violet loves butterflies! Mommy & Nana Opening presents! Sweet birthday girl Ready for some yummies! Having fun! Playing her new piano (just like Mommy!) H...

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...

In this time of Thanksgiving, our little family is thankful for many things. We are thankful to our Lord Jesus for giving us the strength to get through this most difficult time in our lives. We give thanks to Him daily for giving us the means to keep a roof over our heads and food in our home. We praise Him for the healing that has and is taking place in Violet! We are thankful for the support, love and prayers of our friends, family and kind strangers that have kept us lifted up. Josh and I try our hardest to remain positive and hopeful every day. It isn't an easy thing to do. I admit honestly that it is, in fact, very difficult at times. We work at it daily and pray about it daily. It is very important to us to provide Violet with a happy and peaceful home life amongst the chaos of her condition and treatment. So, for all of you who have given us encouragement, true support and sensitivity in our time of need we are so grateful! We are praying and keeping a hopeful heart tha...

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 ...

Today Violet had her exam under anesthesia to see how well the chemotherapy is working on shrinking the tumor in her left eye. Instead of telling a story of how the day went from start to finish as I usually do I am going to just share the results with you because I am still quite numb and overwhelmed from it all. I will try to explain it as well as I can as I am still trying to take it all in. The tumor in Violet's left eye shrunk significantly from the chemotherapy. Her doctor said it was a difference of night and day. At Violet's original CT scan and exam 2 months ago the tumor was large and blocking the back of her eye which concealed her optic nerve from view. Now that the tumor is small they found that the tumor is directly on the optic nerve (the nerve that travels from your eye to your brain carrying the signals that allow us to see). This discovery brings with it new concerns. Violet's doctor wants to have an MRI done to make sure that the cancer has not gotten...

On Thursday of last week I took Violet back to the hospital for labs and, unfortunately, her ANC level was only 500. I was disappointed but Violet's doctor said that she should be fine by this week for everything scheduled. As we drove home and passed all kinds of fun places I did have a moment of sadness over the fact that I couldn't take Violet anywhere other than home. Violet has grown up so much in the last couple of months and it hurts my heart that the only things she gets to see are our apartment and the hospital. She finds such delight in the paintings and designs on the walls at the hospital now and I know she is just going to be blown away when we finally get to take her somewhere like the aquarium or even just a toy store. I look forward to the day when we get to take this little girl out for something fun! I know that day will come. So, these past few days we have done more of the same. I stay here at the apartment and keep Violet entertained. Thank God she is a...

Just 7 days following Violet's last chemotherapy treatment her blood tests showed that her ANC had dropped from 904 to only 96. This was a drastic drop, especially knowing that she hadn't reached her lowest point in the month yet which is commonly day 14. We knew that we just had to continue what we were doing in keeping Violet isolated and maintaining as much of a germ free environment as possible. As I was feeding Violet her dinner 1 week later she started to cry out of nowhere. Josh and I looked at each other very concerned because we could tell something wasn't right from her sudden cry. I felt her forehead and she felt hot to me. When I had put her in her highchair to eat she had felt fine. So, I asked Josh to feel her and he thought she felt ok to him. He took her out of her highchair and brought her to the couch with him to calm her. Then, as I was cleaning up after Violet's dinner he said to me, "Actually, Shenay, she does feel hot." Immediately, I...

On Thursday of last week my mom and I took Violet to the hospital for her labs (blood tests) and chemotherapy infusion. It was a difficult start to the day when the nurse went to access Violet's port. She began to cry before the nurse even started since she knew what was going to happen. My singing and her favorite toy couldn't distract her at all this time. Violet was upset and focused on what was happening to her. It was tough for all of us. Usually, Violet recovers quickly from the port accessing and is fine while we wait for her lab results, but on this day she was just not having it. She cried and fussed for the next couple of hours. It broke our hearts. It is very rare for Violet to cry or fuss for more than a few minutes because she is just such a happy and content little girl. We were called in to see her doctor and so we had to stop in the first room to get her vitals. Violet cried for each step: blood pressure, temperature, weight and height. She usually does not ...

Happy baby = happy mama. Last Thursday, Violet had her blood work done to see if her counts had started to finally come back up. Due to a mix up with her appointment, we did not have to stay to speak to the doctor after her labs. They let us know that they would just call us with her results. We were able to leave right away, so this meant she did not have to keep the line in her port-a-cath. That made all the difference in the world! They accessed her port, drew the blood, and then de-accessed right away. Violet didn't cry and that made me so happy. After hours had passed and no call from the hospital, I called them (this is usually how it goes). I was put in touch with a nurse who let me know that all of Violet's counts had started to come back up. I was so relieved to hear this. Her ANC was at almost zero the week before and it had now reached the 700 range. This took Violet out of the severe category to the moderate category for deficiency (normal is 1800). I was also tol...

Germophobia: An apprehension concerning germs. Someone who has such a concern is often referred to as a "germophobe".  Ok, so I have officially become a germophobe. And, I don't care if there is a negative stigma attached to the term. I have become a germophobe for the safety of our baby. If anyone thinks that I'm the crazy lady at the store because I'm wearing latex gloves ... so be it. Heck, I might even bust out a hospital mask if I feel the need as the cold and flu season arrives. This entire situation has really changed me because I don't care what others think of me anymore as I am living and doing these things to ensure the health of our child. The last 2 visits to the hospital for Violet's blood tests have been a bit tough. Violet is a smart little nugget and she learned very quickly that if a nurse is going for her chest that means something bad is about to happen. So, she is definitely getting upset during her port access (sterilizing the area,...