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!
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 comfortable enough to give Violet some tylenol and let us go home to monitor her. After 48 hours, her blood cultures showed no bacterial infection and Violet never had a fever after that night.
Last Thursday morning, Violet had a hearing test to see if there was any damage done from the chemotherapy medications thus far. We had been praying so much for perfect hearing. The woman performing the test kept telling me how amazed she was with Violet throughout the testing. She said she never sees children her age so happy and tolerant of the process, especially ones that have been through so many pokes and procedures. After the testing was done she let us know that Violet has super baby hearing! She picked up sounds at frequencies beyond what they consider great!
Thank you all for your prayers. We are so grateful to God for this result!
Later that day at Violet's next appointment, we spoke to her oncologist more about the plan for the next few months. Violet will have another EUA (exam under anesthesia) this Wednesday and then her last round of chemotherapy on Thursday and Friday. After that, she will be having EUA's continuing at every 4 weeks to monitor no recurrence. For this reason, her port-a-cath will be left in to be accessed to administer the anesthesia. Once she has had no recurrence for a few EUA's, they will space them out more to every 8 weeks and so on.
The first 3.5 years of life with Retinoblastoma are the most vulnerable for additional tumors to appear. After that, there is a smaller chance of recurrence between 3.5 and 6 years. The chances after the age of 6 are miniscule.
We are so happy that Violet gets to stop chemotherapy after this week. Her little body has just been flooded with medications and we will be glad for that to end. In the beginning of all this, we thought that when chemotherapy was finished we would be able to finally exhale. Unfortunately, it just isn't the case. Knowing that tumor, though inactive now as far as they can see, is sitting there unable to be removed will always be in the back of our minds. That threat is always there and as parents it just isn't something you can ignore.
On another positive side, Violet's immune system will come back up, her hair will start to grow back and we will get to go out and play and see the world together. That sounds so wonderful and we sure look forward to it!
Please keep this sweet brave girl in your prayers. <3
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 comfortable enough to give Violet some tylenol and let us go home to monitor her. After 48 hours, her blood cultures showed no bacterial infection and Violet never had a fever after that night.
Last Thursday morning, Violet had a hearing test to see if there was any damage done from the chemotherapy medications thus far. We had been praying so much for perfect hearing. The woman performing the test kept telling me how amazed she was with Violet throughout the testing. She said she never sees children her age so happy and tolerant of the process, especially ones that have been through so many pokes and procedures. After the testing was done she let us know that Violet has super baby hearing! She picked up sounds at frequencies beyond what they consider great!
Thank you all for your prayers. We are so grateful to God for this result!
Later that day at Violet's next appointment, we spoke to her oncologist more about the plan for the next few months. Violet will have another EUA (exam under anesthesia) this Wednesday and then her last round of chemotherapy on Thursday and Friday. After that, she will be having EUA's continuing at every 4 weeks to monitor no recurrence. For this reason, her port-a-cath will be left in to be accessed to administer the anesthesia. Once she has had no recurrence for a few EUA's, they will space them out more to every 8 weeks and so on.
The first 3.5 years of life with Retinoblastoma are the most vulnerable for additional tumors to appear. After that, there is a smaller chance of recurrence between 3.5 and 6 years. The chances after the age of 6 are miniscule.
We are so happy that Violet gets to stop chemotherapy after this week. Her little body has just been flooded with medications and we will be glad for that to end. In the beginning of all this, we thought that when chemotherapy was finished we would be able to finally exhale. Unfortunately, it just isn't the case. Knowing that tumor, though inactive now as far as they can see, is sitting there unable to be removed will always be in the back of our minds. That threat is always there and as parents it just isn't something you can ignore.
On another positive side, Violet's immune system will come back up, her hair will start to grow back and we will get to go out and play and see the world together. That sounds so wonderful and we sure look forward to it!
Please keep this sweet brave girl in your prayers. <3
What a blessing to have such a fun Christmas. I am so encouraged by reading your blog - and pleased that my comment showed up this time! May you have a wonderful New Year. I'm so glad to hear that as Violet gets older that the incidence of recurrance drops dramatically. That's terrific!
ReplyDeleteKathy (ccb)
Thank you very much Kathy!
ReplyDelete