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 took Violet to start her final round of chemotherapy. She was full of energy at first and then she slowed down to take a nap.
Violet did great for the rest of the day and night.
On Friday, I took her in for her last chemotherapy infusion. She stayed awake for the entire time and handled it all really well.
And, yes, it is quite a juggle to keep a little one occupied during chemo! I have been asked about this a lot. You have to stay in a very small exam room for hours and keep these sweet little fingers away from the IV lines. You find things that work for you. I learned that keeping her lines covered as much as possible with blankets helps. Out of site out of mind. This particular time with Violet being in jammies, her line was coming out at the top by her neck so the bib worked out well to help with that. I bring lots of toys and I demand a room with a TV so that Violet can watch cartoons or DVDs that we bring. She also loves music (and it will always cheer her up) so we have that with us as well.
Violet slept on the way home cuddled up to her Lola doll.
Violet was amazing again that night with no problems.
Over the weekend Violet took a turn and started to not feel well. She had her usual symptoms and signs of being pale, having purple under her eyes and getting a little bit of cold sweats. But, this time she also vomited. It was so hard to see her like that. She has never gotten sick like that before and you could tell it scared her.
We had to take her back to the hospital again on Sunday for her Neulasta shot. She handled it like a pro with only a slight cry to let us know she felt the burn from the injection but then went right back to having her bottle. Yes, we do time it that way for her and it really helps!
Violet vomited again on Monday which is the day after I usually stop giving her anti-nausea medications. I had to continue them this week for an extra 4 days. She also started to show signs of discomfort from her shot, so we had to give her pain medication as well. This was definitely the most her treatment has ever affected her. Last night was the first night that she went to bed without crying.
Yesterday, I took Violet in for her labs and appointment. I was concerned because she has a lot more bruising than usual. They let me know that her platelet count was the lowest it has ever been and that was why. Thankfully, it was above the level that she would need a transfusion. Throughout this entire course of treatment I always knew a transfusion could be something she would have to go through. One of the nurses told me that Violet was very lucky that she made it through 6 months of chemo without needing one. I know that God protected her from that.
Violet's ANC is in the 600 range this week which is still low, but higher than usual for her at this week after chemo. I pray that it just keeps going up from here. This little girl has a trip to the Seattle Aquarium waiting for her as soon as she is well enough! She is amazed at the little fish tanks at the hospital so I can't wait to see her face when she sees there is so much more.
Today, Violet has been doing great so far and I pray that it continues! Thank God, no more chemo for this little girl.
Thank you all so much for the continued encouragement, love and prayers for Violet and our family!
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 took Violet to start her final round of chemotherapy. She was full of energy at first and then she slowed down to take a nap.
Violet did great for the rest of the day and night.
On Friday, I took her in for her last chemotherapy infusion. She stayed awake for the entire time and handled it all really well.
And, yes, it is quite a juggle to keep a little one occupied during chemo! I have been asked about this a lot. You have to stay in a very small exam room for hours and keep these sweet little fingers away from the IV lines. You find things that work for you. I learned that keeping her lines covered as much as possible with blankets helps. Out of site out of mind. This particular time with Violet being in jammies, her line was coming out at the top by her neck so the bib worked out well to help with that. I bring lots of toys and I demand a room with a TV so that Violet can watch cartoons or DVDs that we bring. She also loves music (and it will always cheer her up) so we have that with us as well.
Violet slept on the way home cuddled up to her Lola doll.
Violet was amazing again that night with no problems.
Over the weekend Violet took a turn and started to not feel well. She had her usual symptoms and signs of being pale, having purple under her eyes and getting a little bit of cold sweats. But, this time she also vomited. It was so hard to see her like that. She has never gotten sick like that before and you could tell it scared her.
We had to take her back to the hospital again on Sunday for her Neulasta shot. She handled it like a pro with only a slight cry to let us know she felt the burn from the injection but then went right back to having her bottle. Yes, we do time it that way for her and it really helps!
Violet vomited again on Monday which is the day after I usually stop giving her anti-nausea medications. I had to continue them this week for an extra 4 days. She also started to show signs of discomfort from her shot, so we had to give her pain medication as well. This was definitely the most her treatment has ever affected her. Last night was the first night that she went to bed without crying.
Yesterday, I took Violet in for her labs and appointment. I was concerned because she has a lot more bruising than usual. They let me know that her platelet count was the lowest it has ever been and that was why. Thankfully, it was above the level that she would need a transfusion. Throughout this entire course of treatment I always knew a transfusion could be something she would have to go through. One of the nurses told me that Violet was very lucky that she made it through 6 months of chemo without needing one. I know that God protected her from that.
Violet's ANC is in the 600 range this week which is still low, but higher than usual for her at this week after chemo. I pray that it just keeps going up from here. This little girl has a trip to the Seattle Aquarium waiting for her as soon as she is well enough! She is amazed at the little fish tanks at the hospital so I can't wait to see her face when she sees there is so much more.
Today, Violet has been doing great so far and I pray that it continues! Thank God, no more chemo for this little girl.
Here she is practicing her poise :)
Little Violet U are amazing! ! Looking at these pics of her she does look soooo strong and wise , funny and unique !
ReplyDeleteshe has such a flawless skin ! We love your little girl....thank u so much for posting and sharing she and U guys r in our prayers through out all this .
Little Violet U are amazing! ! Looking at these pics of her she does look soooo strong and wise , funny and unique !
ReplyDeleteshe has such a flawless skin ! We love your little girl....thank u so much for posting and sharing she and U guys r in our prayers through out all this .
Thank you so much for your kind words and for your prayers! They mean so much to our family.
ReplyDeleteSo glad to hear Violet is doing so well! Prayers and love ~
ReplyDeleteKathy