I'm Here To Stay...
I had my appointment with Dr. O’Connor today, we met for a little over an hour and our meeting went well.
My Dad arrived on a red eye flight from Los Angeles mid-day Sunday and accompanied me to the appointment. Afterwards, we discussed my options over lunch before he hopped on a plane and headed back to California. Dr. O’Connor felt this meeting was important, and his office requested one of my parents be present.
The big problem I’m experiencing is profuse nose bleeds, and Dr. O’Connor feels he can control these in a couple ways, both non invasive. As I’ve mentioned before, the other two side effects are minor in comparison, but they are still a nuance. They’re going to try to control these with other medications.
I received two pieces of good news today. First, my blood numbers are as close to normal as they should be. Second, they decided to scan me after my appointment to ensure that PDX is still working. The disease remains stable and PDX is keeping the HD in check. WHOO HOO! If there was any growth, I would be transitioned to another clinical trial. My Dad asked how long treatment was going to last? Dr. O’s response, “Indefinitely, we’re going to ride the horse as long as the horse can be ridden.” I’m going to continue treatment, three weeks on, one week off. My parents and I are going to begin making permanent living arrangements for me on the east coast.
We have a lot of planning to do and I ask for your prayers as this trainsition takes place.
Fighting 2 Win,
-Alese
My Dad arrived on a red eye flight from Los Angeles mid-day Sunday and accompanied me to the appointment. Afterwards, we discussed my options over lunch before he hopped on a plane and headed back to California. Dr. O’Connor felt this meeting was important, and his office requested one of my parents be present.
The big problem I’m experiencing is profuse nose bleeds, and Dr. O’Connor feels he can control these in a couple ways, both non invasive. As I’ve mentioned before, the other two side effects are minor in comparison, but they are still a nuance. They’re going to try to control these with other medications.
I received two pieces of good news today. First, my blood numbers are as close to normal as they should be. Second, they decided to scan me after my appointment to ensure that PDX is still working. The disease remains stable and PDX is keeping the HD in check. WHOO HOO! If there was any growth, I would be transitioned to another clinical trial. My Dad asked how long treatment was going to last? Dr. O’s response, “Indefinitely, we’re going to ride the horse as long as the horse can be ridden.” I’m going to continue treatment, three weeks on, one week off. My parents and I are going to begin making permanent living arrangements for me on the east coast.
We have a lot of planning to do and I ask for your prayers as this trainsition takes place.
Fighting 2 Win,
-Alese
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