Saturday, we went to OMO knowing we were at least going to be getting platelets as the nurse practitioner had called the night before to say her platelets and hemoglobin had dropped. After I told the nurse practitioner about Ambrosia's nose bleed she decided we definitely needed to come in Saturday morning to at least get platelets. They are doing construction at Kosair along with changing over to a new computer system to use electronic medical records. We hadn't had any issues until Saturday. They had moved OMO registration to the first floor, but I saw no one there. I went up to the 7th floor and told them I was there for OMO and they tried to figure out how to get us registered. We eventually had to go down to the lower level and to outpatient registration. After several minutes of waiting they ended up having me sign actual papers and sent me on to OMO. I was suprised since it was Saturday that they had OMO open instead of just having us up on 7West. We got to OMO and the nurse explained that the new system hadn't left a spot open for them to be scheduled for OMO and that is what caused the delay.
We got settled in and they came to get a CBC to check and see exactly what products we were going to need. Ambrosia ended up needed platelets and blood. However, they only ran the platelets for an hour and then the blood for 1.5 hours. That ended up being great as I was worried since we had to get blood that we were going to be stuck there most of the day. We got finished getting transfusions and went to the Kid's Fair they were having here in town. We had a good time and I got to see someone who used to work at Penney's with me. Later that night my parents and niece and nephews came down to visit. We had a nice full day on Saturday!
Monday, home health came back out to the house to do a CBC and check to see where Ambrosia's numbers were. A couple of hours after the nurse left, I got a call from the clinic nurse who said Ambrosia's numbers were good, but to continue giving her neupogen shots until our next visit.
Today, we went back to the clinic to have numbers checked, get the vincristine chemo medicine, and to find out when our next CT Scan would be. Her numbers were doing great still today, but I still have to give her one more shot tonight. We saw Dr. Cheerva today. She said they will schedule her CT scan as soon as possible. The earliest will be Friday, but I am guessing it will be next week as we also need to have an EKG and heart echo, GFR test, and the one hearing test that Ambrosia wouldn't allow them to do the other day.
Dr. Cheerva is hoping this CT scan shows no more tumors. If it still shows tumors, but they have shrunk to where they are almost gone we are going to move forward with transplant. This means they will do a very high dose of chemo. It will wipe out her bone marrow which they will replace with the stem cells they have already collected from her own body. This process will put us in the hospital for 6 weeks. She wants to do two rounds of this high dose of chemo. If for some reason the tumors have shrunk but not quite enough to where they are almost gone, then we will continue with the same chemo protocol as the last two rounds. If the tumors haven't shrunk or have gotten bigger or there are new tumors we will have to reevaluate Ambrosia's treatment.
A lot is riding on this next CT scan. We desperately need her to be clear of all tumors! I can almost see the light at the end of the tunnel but I am trying not to get too far ahead of myself. Please continue prayers and thoughts for Ambrosia. Share her Facebook page and this blog to others as we need a lot of positivity sent her way for a clear CT scan!
We got settled in and they came to get a CBC to check and see exactly what products we were going to need. Ambrosia ended up needed platelets and blood. However, they only ran the platelets for an hour and then the blood for 1.5 hours. That ended up being great as I was worried since we had to get blood that we were going to be stuck there most of the day. We got finished getting transfusions and went to the Kid's Fair they were having here in town. We had a good time and I got to see someone who used to work at Penney's with me. Later that night my parents and niece and nephews came down to visit. We had a nice full day on Saturday!
Monday, home health came back out to the house to do a CBC and check to see where Ambrosia's numbers were. A couple of hours after the nurse left, I got a call from the clinic nurse who said Ambrosia's numbers were good, but to continue giving her neupogen shots until our next visit.
Today, we went back to the clinic to have numbers checked, get the vincristine chemo medicine, and to find out when our next CT Scan would be. Her numbers were doing great still today, but I still have to give her one more shot tonight. We saw Dr. Cheerva today. She said they will schedule her CT scan as soon as possible. The earliest will be Friday, but I am guessing it will be next week as we also need to have an EKG and heart echo, GFR test, and the one hearing test that Ambrosia wouldn't allow them to do the other day.
Dr. Cheerva is hoping this CT scan shows no more tumors. If it still shows tumors, but they have shrunk to where they are almost gone we are going to move forward with transplant. This means they will do a very high dose of chemo. It will wipe out her bone marrow which they will replace with the stem cells they have already collected from her own body. This process will put us in the hospital for 6 weeks. She wants to do two rounds of this high dose of chemo. If for some reason the tumors have shrunk but not quite enough to where they are almost gone, then we will continue with the same chemo protocol as the last two rounds. If the tumors haven't shrunk or have gotten bigger or there are new tumors we will have to reevaluate Ambrosia's treatment.
A lot is riding on this next CT scan. We desperately need her to be clear of all tumors! I can almost see the light at the end of the tunnel but I am trying not to get too far ahead of myself. Please continue prayers and thoughts for Ambrosia. Share her Facebook page and this blog to others as we need a lot of positivity sent her way for a clear CT scan!
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