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 Retinoblastoma there is always a chance of new tumors it didn't cushion the blow.
The next morning as I was getting Violet dressed I got a phone call from Josh. He was about to go in for work and he was in tears. It broke my heart that he had to get through the day at work so sick with worry and concern for our baby girl. I told him how much I love him, to keep praying and that we would get through this.
After I got off the phone with Josh I called the hospital to let them know what we had found. It was important to me that her ophthalmologist know what we feared was there before her upcoming exam. Our discussion time is always short with him on exam days, so I wanted him informed ahead of time. That way, we could use the time we had with him getting answers to our questions.
During this whole trial, it has been my choice to stay positive as much as I possibly can. It is important to me not to be a crying mess in front of Violet but to be quite the opposite. I don't want her to feel that anything is wrong and I want her to have fun every day. It is a very thin line of balancing researching enough to be informed and to be a strong advocate for Violet, but not getting ahead of myself. I have felt that by immersing my focus in the vast scary information on the internet would only do more harm than good. I let myself read little bits at a time from reputable resources. I have found that even the doctors only give us the pertinent information week to week and we always learn something new at each appointment. This can be very frustrating, but I now feel that they do this so as to not completely overwhelm us and to aid us in getting through one step at a time.
The night before the exam I could tell Josh was having a very hard time. I asked him where his thoughts were and he let me know that he had read some things on the internet that had him very upset. I tried my usual "everything is going to be ok" but he shook his head and started to well up with tears. So, I asked (and did not want to know the answer), "What did you read?"
As you all know, Josh and I have been waiting with our hearts in our throat for 2 months for the results of Violet's genetic testing to see if she does or does not have the Retinoblastoma gene. If she does have this gene she is at higher risk to develop other cancerous tumors in other places of her body. We had been expecting to finally get this result about 2 weeks ago. I asked about it at 2 different appointments and was told that the hospital was still waiting to get the results back (they send these blood samples out to another state for testing). So, you can imagine my anger when I took Violet in for her routine weekly labs a couple weeks ago and was told by the nurse, "Oh, it looks like we are doing some extra special blood draws this week for Violet." After I asked her what she was referring to, and she answered me with genetic testing I firmly let her know we already did that 2 months ago and I was expecting the results. She called the doctor to find out what was going on and sure enough, Seattle Children's made yet another mistake in a very very long string of mistakes and LOST Violet's blood samples and apparently they were never even sent out. So, we are waiting ... again.
Josh began to tell me that he found out online that children diagnosed with Bilateral Retinoblastoma statistically have a 92% chance of having the gene. That is a very staggering number. I felt sick. He also found information showing that young children that are put under anesthesia repeatedly, as Violet has had to and will continue to endure, have shown to have learning troubles. He went on to tell me other things that I choose not to share here or to focus on at all. Overwhelmed by it all, I began to search out those things online myself in hopes of it not being true, broke down crying, and ended up crying myself to sleep that night pleading with God to give us a miracle in the complete healing of Violet and to never let cancer come back again.
So, here we were, the day of the EUA and the hospital was running about an hour late. Poor Violet was so hungry and they finally took her back to start her procedure at about 12:30. Josh and I take turns going back with her, since they only let 1 of us go, until she falls asleep. This time was my turn but I needed Josh to do it. So, he got dressed in the protective clothing they provide and I handed Violet to him after giving her a kiss.
When Josh came back with tears in his eyes we prayed. Then we gathered our things and went to wait.
The pager that the hospital gives us went off letting us know the doctor was ready to see us while Violet went to the next area to wake up from anesthesia. We went to the room to meet with him. I gather he could see the worried sick look on our faces as he approached us because he gave us a thumbs up! He sat down with us and explained that there was no new tumor in her right eye. Oh, thank God! That was the best news. He let us know that the reason we saw the white glow in photos was because there is a tiny bit of scar tissue left in that eye from when they froze the previous tumor. He also let us know that the remaining tumor in her left eye still looks inactive and if it was anywhere else he could laser it away at this point but being up against her optic nerve still, he cannot do anything to treat it. He recommended because of this, she continue with chemotherapy. We had many many questions but they would need to be answered by her oncologist the next day.
Thursday, Josh and I met with Violet's oncologist and it was a longer than usual session with all the questions that we had. Josh also does not usually get to come with me to the clinic days because each day that he takes off work he does not get paid. So, up to this point, we have reserved those days to larger procedures or a chemotherapy day. I wish he could be there with me each week. It is hard to go alone.
We learned a lot at this appointment. Her oncologist confirmed that Violet has a 92% chance of having the gene. He confirmed that research shows she may have learning disabilities from all the anesthesia and he confirmed that she should continue on with a 5th and 6th round of chemotherapy. Reason being, there is an area of the tumor in the back that they still cannot see. This bit of information was the new information for the week. Everything that they can see is inactive but, there is an area that they can't see. Since they cannot treat with laser, chemotherapy is needed to ensure that everything seen and unseen is inactive.
Violet began another round of chemotherapy that day.
Please continue to pray for our sweet Violet. We continue to put it all at God's feet. We lean on Him for strength. We know there are things out of our control. When it comes to your child that is so difficult. We know how much we love our Violet and we also know how much Jesus loves her. We are so thankful for all of that love. There may be things that the doctors can't see, but we know God sees everything and he knows our hearts.
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 Retinoblastoma there is always a chance of new tumors it didn't cushion the blow.
The next morning as I was getting Violet dressed I got a phone call from Josh. He was about to go in for work and he was in tears. It broke my heart that he had to get through the day at work so sick with worry and concern for our baby girl. I told him how much I love him, to keep praying and that we would get through this.
After I got off the phone with Josh I called the hospital to let them know what we had found. It was important to me that her ophthalmologist know what we feared was there before her upcoming exam. Our discussion time is always short with him on exam days, so I wanted him informed ahead of time. That way, we could use the time we had with him getting answers to our questions.
During this whole trial, it has been my choice to stay positive as much as I possibly can. It is important to me not to be a crying mess in front of Violet but to be quite the opposite. I don't want her to feel that anything is wrong and I want her to have fun every day. It is a very thin line of balancing researching enough to be informed and to be a strong advocate for Violet, but not getting ahead of myself. I have felt that by immersing my focus in the vast scary information on the internet would only do more harm than good. I let myself read little bits at a time from reputable resources. I have found that even the doctors only give us the pertinent information week to week and we always learn something new at each appointment. This can be very frustrating, but I now feel that they do this so as to not completely overwhelm us and to aid us in getting through one step at a time.
The night before the exam I could tell Josh was having a very hard time. I asked him where his thoughts were and he let me know that he had read some things on the internet that had him very upset. I tried my usual "everything is going to be ok" but he shook his head and started to well up with tears. So, I asked (and did not want to know the answer), "What did you read?"
As you all know, Josh and I have been waiting with our hearts in our throat for 2 months for the results of Violet's genetic testing to see if she does or does not have the Retinoblastoma gene. If she does have this gene she is at higher risk to develop other cancerous tumors in other places of her body. We had been expecting to finally get this result about 2 weeks ago. I asked about it at 2 different appointments and was told that the hospital was still waiting to get the results back (they send these blood samples out to another state for testing). So, you can imagine my anger when I took Violet in for her routine weekly labs a couple weeks ago and was told by the nurse, "Oh, it looks like we are doing some extra special blood draws this week for Violet." After I asked her what she was referring to, and she answered me with genetic testing I firmly let her know we already did that 2 months ago and I was expecting the results. She called the doctor to find out what was going on and sure enough, Seattle Children's made yet another mistake in a very very long string of mistakes and LOST Violet's blood samples and apparently they were never even sent out. So, we are waiting ... again.
Josh began to tell me that he found out online that children diagnosed with Bilateral Retinoblastoma statistically have a 92% chance of having the gene. That is a very staggering number. I felt sick. He also found information showing that young children that are put under anesthesia repeatedly, as Violet has had to and will continue to endure, have shown to have learning troubles. He went on to tell me other things that I choose not to share here or to focus on at all. Overwhelmed by it all, I began to search out those things online myself in hopes of it not being true, broke down crying, and ended up crying myself to sleep that night pleading with God to give us a miracle in the complete healing of Violet and to never let cancer come back again.
So, here we were, the day of the EUA and the hospital was running about an hour late. Poor Violet was so hungry and they finally took her back to start her procedure at about 12:30. Josh and I take turns going back with her, since they only let 1 of us go, until she falls asleep. This time was my turn but I needed Josh to do it. So, he got dressed in the protective clothing they provide and I handed Violet to him after giving her a kiss.
When Josh came back with tears in his eyes we prayed. Then we gathered our things and went to wait.
The pager that the hospital gives us went off letting us know the doctor was ready to see us while Violet went to the next area to wake up from anesthesia. We went to the room to meet with him. I gather he could see the worried sick look on our faces as he approached us because he gave us a thumbs up! He sat down with us and explained that there was no new tumor in her right eye. Oh, thank God! That was the best news. He let us know that the reason we saw the white glow in photos was because there is a tiny bit of scar tissue left in that eye from when they froze the previous tumor. He also let us know that the remaining tumor in her left eye still looks inactive and if it was anywhere else he could laser it away at this point but being up against her optic nerve still, he cannot do anything to treat it. He recommended because of this, she continue with chemotherapy. We had many many questions but they would need to be answered by her oncologist the next day.
Thursday, Josh and I met with Violet's oncologist and it was a longer than usual session with all the questions that we had. Josh also does not usually get to come with me to the clinic days because each day that he takes off work he does not get paid. So, up to this point, we have reserved those days to larger procedures or a chemotherapy day. I wish he could be there with me each week. It is hard to go alone.
We learned a lot at this appointment. Her oncologist confirmed that Violet has a 92% chance of having the gene. He confirmed that research shows she may have learning disabilities from all the anesthesia and he confirmed that she should continue on with a 5th and 6th round of chemotherapy. Reason being, there is an area of the tumor in the back that they still cannot see. This bit of information was the new information for the week. Everything that they can see is inactive but, there is an area that they can't see. Since they cannot treat with laser, chemotherapy is needed to ensure that everything seen and unseen is inactive.
Violet began another round of chemotherapy that day.
Please continue to pray for our sweet Violet. We continue to put it all at God's feet. We lean on Him for strength. We know there are things out of our control. When it comes to your child that is so difficult. We know how much we love our Violet and we also know how much Jesus loves her. We are so thankful for all of that love. There may be things that the doctors can't see, but we know God sees everything and he knows our hearts.
Shenay and Josh...I pray for Your strength...God bless you..Violet....there's no way she can have learning disabilities !look at her! Witty and bright little thing! We can see it in her she is a superstar!
ReplyDeleteContinuing to pray each day for you...thanks for the update.
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