Skip to main content

Posts

Showing posts from 2012

Wonderful

After singing bedtime songs tonight, Violet snuggled in, sharing my pillow, and held my face close to hers with her little hand. She fell asleep that way. It warmed my heart and made me smile. My thoughts turned right to God and I thanked him for such a precious moment. It was so sweet. We had 3 entire months off from hospital visits this summer and it was so wonderful! We were so happy to have that break. We went to different parks, Seattle Center, Pike's Market, the Bellevue 4th of July festival and had visits from our family in California. Such a blessed time! Violet had a blast and so did we. :) On Wednesday, September 5th, Violet had her EUA (exam under anesthesia) at Seattle Children's Hospital. When the surgery scheduler called to give me all of the pre-procedure guidelines, she had let me know that Violet was the first child on the schedule for the day. I was so grateful because Violet has had so many days where she is later on the schedule and when things run

Little Miracles

This sweet little girl. She continues to amaze us and inspire us every single day. What a huge blessing we have in Violet. There is just so much to be grateful for and not a day goes by that we take for granted.  Violet has had her port-a-cath surgically removed and life after the port-a-cath is amazing! Can I just share with you that Violet was running around playing just a few short hours after surgery? It was as though she knew she was free from it and I think our happiness in reaching this day just seeped into her. We can pick her up under both arms without worry of dislodging a device in her chest. It's wonderful! Josh yearned for the day when he could lift Violet up into the air (like many parents do on a daily basis without thought) and now he can and does often!  The concern over Violet's chromosome 13 deletion and the developmental/physical impairments that we were told she may have ... they are not an issue. Violet is walking, climbing, talking up a s

Voice of Comfort

The day before an EUA (exam under anesthesia) for Violet is always filled with a bit of nervousness. Being human, we have our moments where our hearts and minds can wander and fear will always try to take a hold of you if you choose to allow it. That night before we had to take Violet to the hospital, we all got into bed and (for probably the dozenth time that day) I began to pray for God to take care of our baby and for us to receive the news that Violet continues to be cancer free. As I began my prayer, before the thoughts even got past the "Please Lord" I was gently interrupted. I felt the comfort of God tell me that I didn't even need to continue, that he knew my heart and that it was already taken care of. This was so powerful that it made tears poor down my cheeks and brought a smile to my lips. I felt safe as if I was just given a huge comforting hug and I fell asleep knowing, not thinking, that Violet's exam would yield great results. Everything ran pretty

Another ER Trip & Hospital Stay - Part 2

... continued from part 1 ... The messages were from a few different nurses and doctors, but they all said the same thing. They informed me that it was urgent to bring Violet back to the hospital because the blood that they took when she was in the ER came back positive for bacteria. This was so urgent, in fact, that the last message left for us a few minutes before I checked my phone said if they did not hear back from us very soon they were going to send someone out to our home. I immediately told Josh to hurry and get dressed and that we needed to get Violet to the hospital right away. We were out of the house in minutes. My mind raced and I couldn't help but panic. I called family members on the way asking for prayers. When we got to the ER, they were obviously expecting us and got us into a room right away. I told the nurse that Violet needed numbing cream for her port since we left in such a rush and she came back quickly to apply it. But then, the staff started to lag.

Another ER Trip & Hospital Stay - Part 1

On Tuesday, March 13, Violet started to run a low grade fever. When you have a child with a port-a-cath any kind of temperature above normal causes your heart to go into your throat. A bacterial infection is something they warned us about at the time of surgery 8 months ago. This was a risk we were not told about prior to the surgery, but after. We needed to put this device into our child to administer chemotherapy to save her life, but this device also came with a risk of infection that can be fatal. For all of Tuesday and Wednesday I monitored Violet's temperature. She began to be a bit clingy and whiny which is not her norm. Her temperature never reached the point where I needed to call the hospital on these two days, but Josh and I were very concerned. Violet was showing no other signs of being ill to explain what was going on. Here is the reference sheet from the hospital on monitoring Violet's temperature ... Thursday came and Violet's temperature was slowly goin

Enjoying our Freedom!

It has been so amazing getting out and about with Violet this past month! We have been able to visit our family so much more and go on fun outings together. We have gone everywhere from the grocery store, the mall, church, the Seattle Aquarium and the Point Defiance Zoo. After 6 months of only getting to see the hospital it has been so exciting! I can't tell you how wonderful it is to get Violet out of the home and to see her enjoying new sites. Violet loved the aquariums! Seattle Children's Hospital is decorated in an ocean theme so there are some small fish tanks throughout. Violet has loved to watch the fish and that is one of the words she loves to say. So, we knew that she would be so excited to see the huge tanks at the aquarium. She was hugging the tanks like she wanted jump right in and was squealing with happiness. It was funny to see all the people around her smiling and laughing at her excitement and my husband, Josh, heard a woman behind us say, "She's

Chromosome 13 Deletion

I have lost a lot of sleep over the last 6 months with everything that has been going on with Violet, but the last couple of nights I can barely sleep at all. First, I want to focus on the great blessings that we have right now. Violet is done with chemotherapy and her labs yesterday showed that all of her counts have almost fully recovered. This means that active treatment is completely over. There are no more weekly port accesses and blood tests! And, chemotherapy was very successful. Violet's ophthalmologist said that it was one of the best responses to chemotherapy that he has ever seen. That is so much to be grateful for. Violet's eye was saved (though we won't know exactly what kind of vision she will have for some time) and that in itself is amazing. 20 years ago, medicine wasn't anywhere close to where it is today for Retinoblastoma and her eye would have needed to be removed immediately. Thankfully, that was avoided. Another wonderful thing to report is Vio

Praise God ... No More Chemo!

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

Sweet Brave Girl

December was full of blessings for our family. Celebrating Violet's birthday and Christmas were very welcome distractions for us. While Violet's blood counts were down more than up, we were still able to be with family because thankfully no one was sick or had a cold. It was so wonderful to be able to dress her up, take her out and see the enjoyment on her face! excited to see Santa ... then a little bored haha not sure what to think of Santa yet I love that Santa gave Violet sweet cuddles opening presents! trying to figure out this ribbon this is fun! getting help from her cousins playtime! We did have an fever scare the weekend before Christmas. Whenever a child going through chemotherapy gets a temperature over 100.5 it means a trip to the ER to make sure there is no infection. With a port-a-cath like Violet has, there is always risk, and so it scared us, but thankfully after they checked her ANC level and found that it was not severely low, they felt co