After my last post on here several things happened. The PET Scan was scheduled at the James Graham Brown Cancer center and we got to ride in an ambulance over there. I got us registered while the nurse that accompanied us, along with Wes and Ambrosia, went on back to the PET scan area. Once I got us registered, I went to join them only to be greeted by the anesthesiologist who informed me that their policy wouldn't allow them to sedate anyone under the age of 2. The PET scan technician was also unsure whether or not they were even allowed to do the scan on someone under the age of 2 there. It was a big mess. I don't know how Ambrosia's age was somehow lost in the scheduling of things, but it's not like her birthday is a big secret on her medical records! The scheduler at Kosair apologized and told me they knew of her age when she scheduled it. Somewhere along the way things weren't communicated properly.
We were told that maybe someone from Kosair could come over to do the sedation for Ambrosia and then do the scan. That was checked into and ultimately was decided it couldn't be done. We were then rescheduled to have the PET scan done at the Norton Pavilion on Saturday. They normally don't do the sedation appointments on Saturday but we were reassured that an anesthesiologist was coming in just for Ambrosia to get this done as it was the only reason we were still in the hospital.
Thankfully everything went off without a hitch on Saturday and we were able to get the PET scan completed. After that we were discharged! Dr. Lucas had decided to give us a break and didn't make us come back to OMO until this morning. I was grateful for that break. We were able to lounge around the entire day and just enjoy each others company. It was definitely nice!
This morning we had our OMO appointment. I had a slow start getting everything we needed together (myself, Ambrosia, medicine, feeds going) and once we got to OMO registration I was told they weren't ready for us. Apparently our appointment had been originally scheduled for the afternoon but it was changed later and OMO was not aware of it. While waiting at registration, Ambrosia's feed bag busted open because it said there was a clog in her line. I was beyond frustrated at this point as all I could see in our future was having to get her NJ tube replaced once again. After getting a new bag we headed over to OMO where I tried to figure out what was clogged. Luckily it turns out that the part of the tube connected to Ambrosia was not clogged, it was the line from the bag itself. Thank goodness for small miracles.
Labs were taken from Ambrosia and we settled in to wait for results and to be seen. Awhile later Dr. Cheerva came in. Ambrosia's counts were all good. Her ANC was up, platelets and hemoglobin were both good as well. So good in fact that we don't have to go back until Wednesday! Another break tomorrow is definitely okay with me.
Unfortunately, the official read for the PET scan was not in yet. However, Dr. Cheerva could pull up the scan and looked through the pictures. On the right side of the screen was a color scale. It ranged from black to red to yellow to white. The black meant the tumors were inactive on up to white where they were very active. As she was looking we both saw a couple of tumors had lit up yellow. This of course was not the news we were hoping for. Dr. Cheerva said she would email some people across the country about Ambrosia to see if there were any new thoughts as to how to proceed with treatments. She mentioned some oral chemotherapy medicines that might be helpful to Ambrosia. She said that in other patients it has really helped although it is not a cure. I should have clarified with her, but I believe she meant in keeping the tumors from spreading in between treatments.
I asked her if she wouldn't mind contacting doctors at St. Jude's to see if any studies are being done on Ambrosia's kind of cancer currently. I told her that of course a lot of people had brought up St. Jude's and we were only using them as a last resort as it is so far away. I know they have been in contact with other doctor's before now about Ambrosia, but I don't know if any of them have been from St. Jude's. She mentioned after her last CT scan before transplant that their network was the entire world. That's how far they have looked for successful protocols for Ambrosia's cancer.
She did mention that they would wait for the official read on Ambrosia's PET scan, but we could both see the tumors lit up as active. When we go back to OMO on Wednesday, they will have hopefully been able to get in contact with people and discussed how best to proceed with treatments. I pray they are able to come up with something worth trying as I am not ready to go elsewhere for treatments.
We were told that maybe someone from Kosair could come over to do the sedation for Ambrosia and then do the scan. That was checked into and ultimately was decided it couldn't be done. We were then rescheduled to have the PET scan done at the Norton Pavilion on Saturday. They normally don't do the sedation appointments on Saturday but we were reassured that an anesthesiologist was coming in just for Ambrosia to get this done as it was the only reason we were still in the hospital.
Thankfully everything went off without a hitch on Saturday and we were able to get the PET scan completed. After that we were discharged! Dr. Lucas had decided to give us a break and didn't make us come back to OMO until this morning. I was grateful for that break. We were able to lounge around the entire day and just enjoy each others company. It was definitely nice!
This morning we had our OMO appointment. I had a slow start getting everything we needed together (myself, Ambrosia, medicine, feeds going) and once we got to OMO registration I was told they weren't ready for us. Apparently our appointment had been originally scheduled for the afternoon but it was changed later and OMO was not aware of it. While waiting at registration, Ambrosia's feed bag busted open because it said there was a clog in her line. I was beyond frustrated at this point as all I could see in our future was having to get her NJ tube replaced once again. After getting a new bag we headed over to OMO where I tried to figure out what was clogged. Luckily it turns out that the part of the tube connected to Ambrosia was not clogged, it was the line from the bag itself. Thank goodness for small miracles.
Labs were taken from Ambrosia and we settled in to wait for results and to be seen. Awhile later Dr. Cheerva came in. Ambrosia's counts were all good. Her ANC was up, platelets and hemoglobin were both good as well. So good in fact that we don't have to go back until Wednesday! Another break tomorrow is definitely okay with me.
Unfortunately, the official read for the PET scan was not in yet. However, Dr. Cheerva could pull up the scan and looked through the pictures. On the right side of the screen was a color scale. It ranged from black to red to yellow to white. The black meant the tumors were inactive on up to white where they were very active. As she was looking we both saw a couple of tumors had lit up yellow. This of course was not the news we were hoping for. Dr. Cheerva said she would email some people across the country about Ambrosia to see if there were any new thoughts as to how to proceed with treatments. She mentioned some oral chemotherapy medicines that might be helpful to Ambrosia. She said that in other patients it has really helped although it is not a cure. I should have clarified with her, but I believe she meant in keeping the tumors from spreading in between treatments.
I asked her if she wouldn't mind contacting doctors at St. Jude's to see if any studies are being done on Ambrosia's kind of cancer currently. I told her that of course a lot of people had brought up St. Jude's and we were only using them as a last resort as it is so far away. I know they have been in contact with other doctor's before now about Ambrosia, but I don't know if any of them have been from St. Jude's. She mentioned after her last CT scan before transplant that their network was the entire world. That's how far they have looked for successful protocols for Ambrosia's cancer.
She did mention that they would wait for the official read on Ambrosia's PET scan, but we could both see the tumors lit up as active. When we go back to OMO on Wednesday, they will have hopefully been able to get in contact with people and discussed how best to proceed with treatments. I pray they are able to come up with something worth trying as I am not ready to go elsewhere for treatments.
RSS Feed