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 were informed that Violet might need 2 more rounds. Basically, they want the tumor to be completely white indicating that it is merely dead scar tissue. Violet will have another exam under anesthesia on Wednesday, December 7th to see how everything is looking and to see if an additional round of chemotherapy is needed.
The fact that the tumor is located on her optic nerve (pathway to the brain) we are obviously in agreement that treatment should be continued until the tumor is scar tissue and cannot be a threat to Violet. The sad part is, since this tumor cannot be removed because of its location, Violet is not likely to have much, if any, vision restored to this eye by any medical means. We will still be praying for God to change that!
The second concern is, since Violet has bilateral retinoblastoma, it only takes 1 cell to cause another tumor and recurrence is common. In the doctor's terms, Violet is very vulnerable for the next couple years of her life. Even when treatment is done for this tumor, she will need to be seen regularly for exams under anesthesia to check her eyes. At first, the exams will be monthly, then if no recurrence they will be every 2 months and then finally if no recurrence every 3 months.
The third concern is the blood test that was sent out 5 weeks ago. If you recall, Violet's doctors were concerned that since she had tumors in both eyes that she might have the gene that can cause cells to multiply in other areas of her body causing cancerous tumors elsewhere. We are still waiting on the results of this test. We are praying for this test to come back with the result that she does NOT have this condition. The results should be back within the next 2 weeks.
Lastly, when chemotherapy is finally done and follow up blood tests are finished they will schedule surgery for Violet's port-a-cath to be removed. We will be very happy when this happens because every day that this foreign object is in her body there is risk of infection. Also, now that she is standing and climbing everywhere I get so nervous that she is going to catch it or bang it on something and dislodge it. When it is gone that will be one less worry and that will be such a blessing. And, we will be able to pick up our little girl in a normal way under her arms! We miss that so much.
So, we still have quite a long road ahead of us but we are thanking God every step of the way for the healing that has and still is taking place. What an amazing God we serve. He has given Violet strength every day to withstand clinic appointments, needle pokes, surgeries, exams, CT scans, MRI, chemotherapy, fever, neutropenia, ER visit, IV's, hospital stays, injections, oral medications and recovery times. Through it all Violet still has the sweetest disposition. She is so happy and silly and she is reaching all of her milestones! (Even ones that they thought wouldn't happen during treatment).
Please continue to keep our Violet in your prayers!
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 were informed that Violet might need 2 more rounds. Basically, they want the tumor to be completely white indicating that it is merely dead scar tissue. Violet will have another exam under anesthesia on Wednesday, December 7th to see how everything is looking and to see if an additional round of chemotherapy is needed.
The fact that the tumor is located on her optic nerve (pathway to the brain) we are obviously in agreement that treatment should be continued until the tumor is scar tissue and cannot be a threat to Violet. The sad part is, since this tumor cannot be removed because of its location, Violet is not likely to have much, if any, vision restored to this eye by any medical means. We will still be praying for God to change that!
The second concern is, since Violet has bilateral retinoblastoma, it only takes 1 cell to cause another tumor and recurrence is common. In the doctor's terms, Violet is very vulnerable for the next couple years of her life. Even when treatment is done for this tumor, she will need to be seen regularly for exams under anesthesia to check her eyes. At first, the exams will be monthly, then if no recurrence they will be every 2 months and then finally if no recurrence every 3 months.
The third concern is the blood test that was sent out 5 weeks ago. If you recall, Violet's doctors were concerned that since she had tumors in both eyes that she might have the gene that can cause cells to multiply in other areas of her body causing cancerous tumors elsewhere. We are still waiting on the results of this test. We are praying for this test to come back with the result that she does NOT have this condition. The results should be back within the next 2 weeks.
Lastly, when chemotherapy is finally done and follow up blood tests are finished they will schedule surgery for Violet's port-a-cath to be removed. We will be very happy when this happens because every day that this foreign object is in her body there is risk of infection. Also, now that she is standing and climbing everywhere I get so nervous that she is going to catch it or bang it on something and dislodge it. When it is gone that will be one less worry and that will be such a blessing. And, we will be able to pick up our little girl in a normal way under her arms! We miss that so much.
So, we still have quite a long road ahead of us but we are thanking God every step of the way for the healing that has and still is taking place. What an amazing God we serve. He has given Violet strength every day to withstand clinic appointments, needle pokes, surgeries, exams, CT scans, MRI, chemotherapy, fever, neutropenia, ER visit, IV's, hospital stays, injections, oral medications and recovery times. Through it all Violet still has the sweetest disposition. She is so happy and silly and she is reaching all of her milestones! (Even ones that they thought wouldn't happen during treatment).
Please continue to keep our Violet in your prayers!
I'm so excited to hear this great news! Violet is so beautiful I just want to snuggle her! Keeping your family in my thoughts and prayers.
ReplyDeleteSuch great news! We will continue to pray for a complete healing in her body. You are such a strong couple and Violet is blessed to have you as her Mommy and Daddy!
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