Haylee had her appointment with the optic nerve specialist today (special thanks to Kim for enduring it with us!!). It was a very long 4 hours but we got GOOD news in the end. The optic nerve swelling has gone down since the appointment on January 25. After yet another exam and research from the other specialists, their final findings were that yes, the ATRA is causing the swelling and increased pressure in the back of her eyes and head. Dr. Biousse said that she wasn't too concerned about the swelling (she said it was subtle) because she's sure that since the ATRA is the problem, it will go away. She is scheduled to start taking it again on February 20 so the swelling will probably come back but decrease again once she stops taking it after the 14 day cycle. Haylee isn't having trouble seeing because of it (her needing glasses is just a coincidence). Dr. Biousse said since the ATRA is crucial for her treatment and she needs it, she should continue taking it as prescribed and continue to follow the protocol written for it and that she will continue to monitor her eyes during her treatment. The doctor doesn't feel like the amount prescribed is doing any damage to her eyes, she's not complaining of headaches, and she's feeling good.
There was mention that upon doing some research, the leukemia or a brain tumor could be the cause. Since she's had 2 clean MRI's (nothing showed up at all, let alone a tumor or leukemia) and 2 clean LP's (the CSF fluid came back with no leukemia cells), those are NOT LIKELY the cause. She made me feel very confident neither one were a consideration but to keep in mind the leukemia could show in CSF fluid at any time. If it hasn't by now, it probably wouldn't. Dr. Biousse made the suggestion that everytime she gets an LP, the fluid should be sent off for testing just to be sure it comes back clean everytime. When Haylee starts Consolidation 2 at the end of March, she will be getting an injection of chemo in her spinal fluid as part of her treatment with this type of leukemia. Even if she shows a few cells in her CSF fluid later on, it won't be for long!!!!
All in all, I was very pleased with the results of the appointment and was glad we got answers today!! The ATRA is the problem, nothing needs to be changed, her eyes will still be monitored, and she's good to go to continue treatment as planned!!!
On another note, we had to drop off some Sprite at Haylee's school this afternoon so it would quit rolling around in my trunk and driving me crazy! We walked into her classroom and the greeting she received from her friends was music to my ears. Her classmates kept saying "Hi Haylee" and "Hey Haylee" and "Will you be back tomorrow?". They were waving and smiling at her. It was so sweet! The ladies in the front office were equally warming :)
No comments:
Post a Comment