I have a lot to update so this entry will be a long one with important information regarding Ambrosia.
Friday last week we went to the clinic for them to check her numbers and also for them to tell us when her next tests would be scheduled, including her important CT scan. After the nurse took Ambrosia's blood they had us immediately go upstairs to the audiologist to try to have her hearing test done again since one of them couldn't be done last time. This time Ambrosia cooperated and we were able to get the necessary test done and it showed no damage so far to her hearing due to the chemo. After the hearing test we had to go back downstairs to the clinic and get her number results. Her numbers were still good. We were scheduled for her heart echo, EKG and CT scan on Monday with sedation for the CT scan.
Monday came and we went to Kosair after dropping our son off at school to get her testing done. We registered and went up to have her heart echo and EKG done. Ambrosia was very fiesty and did not calm down a whole lot during the heart echo. She usually calms down after being held still after a few minutes. She wasn't having any of it this time around. They decided after finishing the heart echo that they would wait to do the EKG after she was sedated and calm.
We headed down to sedation and got checked in there. About 40 minutes before she was due to go back to CT, they had to put a contrast in so they would be able to see the tumors. Once that time passed we were ready to head back to CT. Ambrosia had fallen asleep and I carried her down the hall to where they do the CT scan. Once I laid her on the table for the CT scan she woke up and at that point the nurse had to sedate her so she would be still for the scan. What they gave her worked and Wes and I had to step out while they did the scan.
After the scan we went back to our room in the sedation area and waited for Ambrosia to wake back up. While Ambrosia was still knocked out they did her EKG. They were in and out in less than 10 minutes. After about 45 minutes or so, Ambrosia woke up and we were free to go. We didn't know when we would know the results of her CT scan, but I figured we would know the results on Wednesday when we went in for her appointment.
Later that day on Monday after getting home from picking up our son from school, I got a call from the clinic asking if it would be okay to change the time for our appointment on Wednesday to later in the afternoon. Dr. Cheerva wanted to talk to us about the high dose of chemo with Ambrosia's stem cells. I said that was fine and wondered if they already had the results of the CT scan.
Tuesday came and proceeded like any other normal day. Around 8:30 that night I got a phone call from Dr. Cheerva. She told me she had the results of Ambrosia's CT scan. She said that unfortunately it wasn't good news like they had hoped. The tumor on Ambrosia's liver was stable. It had not changed sized from the last CT scan. Her right lung was still clear, but her left lung had tumors that had doubled in size. This meant the new chemo protocol from the last 2 rounds had not worked like they had expected. She explained they weren't giving up on her yet. She had already met with Dr. Lucas, another oncologist to talk about Ambrosia and options for moving forward. She said she wanted to tell me the news ahead of us meeting on Wednesday so we could process the information and gather any questions we might have to ask. Of course the CT results were not what any of us were hoping for and it was incredibly hard to hear. A lot of tears were shed on my husband and my part.
Wednesday, we got ready for our consult with Dr. Cheerva. We headed to the clinic where they took blood from Ambrosia to check her numbers. After doing that we headed over to register for OMO for the consult, as that is where Dr. Cheerva was meeting us. Dr. Cheerva started off showing us Ambrosia's most recent CT scan and pointed out the tumors in her left lung. She estimated there are about a dozen if not more on her lung. Some of them are bigger than an inch. She then proceeded to tell us our options as our next steps in treating Ambrosia.
One of the options is to give her some treatments only through OMO, which would mean Ambrosia would be home more. Another option was surgery. Before our meeting, Dr. Cheerva said all the oncologists, the radiologist and one of the surgeons met to talk about Ambrosia. They asked the surgeon if he would be able to remove the tumors surgically. He said yes he could. However he didn't know how extensive it would be until he got in there. Unfortunately to remove the tumors from the lungs and the liver it would have to be done in two separate surgeries. The surgeries could be done fairly close together with maybe a week between the two. The recovery time from both surgeries would be a few weeks. They would be concerned with how much time new tumors would have to grow and relocate to new places in Ambrosia's body during recovery. Ambrosia would have to be able to recover from the surgeries before they could start any treatments which is why they are concerned with taking that route. We don't want to end up with new tumors in new places.
Another option is to go outside of Kosair for what Dr. Cheerva said is called Phase 1 and Phase 2. She said the closest place would be Cincinnati for this treatment. It is basically experimental chemo medicines that haven't been tested yet. Phase 1 is trying a new medicine and then Phase 2 would be seeing what the highest amount of that medicine would be that the child could tolerate. Dr. Cheerva said they put the different kinds of cancers into groups, and that meant Ambrosia would be in a group by herself because there aren't even 10 cases of her kind of cancer worldwide right now. She said if we wanted to go that route she would find out the information about how to get us there.
Another option is to proceed with the high dose of chemo with Ambrosia's stem cells used to rescue her bone marrow. This was something that had been in the plans to do once her tumors were gone and not before. Dr. Cheerva said we could move forward with it however there are risks involved. The toxicity of the chemo can put Ambrosia at a higher risk for infections, rashes, and mucoscitis. Ambrosia would likely get sores in her mouth which would deter her from eating. Her numbers would drop to zero and stay there for 2 weeks. This is why we would be hospitalized for up to 6 weeks as she could not be exposed to any outside illnesses at this time because she would not be able to fight them off. Dr. Cheerva said there is also a 5-8% chance that Ambrosia would not survive the high dose of chemo, but because of how well Ambrosia has tolerated all the chemo up until this point she would put her at the lower end of that spectrum. It is a risk she had to tell us.
Dr. Cheerva said if we went this route and Ambrosia's tumor shrunk more than 25% then we could try something that had never been done for Ambrosia's kind of cancer. If the tumors shrunk more than 25% we could try to do a high dose of chemo with bone marrow from a donor. There is an effect from bone marrow donors seen in some kinds of cancer. The immune system from the donor can help fight the tumors and shrink them. This is not the case with all cancers and has never been done before for Ambrosia's kind of cancer. This would be experimental and before it could be done the hospital would have to approve protocol for it and the insurance would have to approve it as well. It would take 2 to 3 weeks for a bone marrow donor to be found as well. All of that depends on how well Ambrosia would respond to the high dose of chemo with her own stem cell rescue first.
Those were all the options given to us. Dr. Cheerva said she wished there was a certain procedure she could point us to that she could say this is the one that will be best and take care of the cancer, but unfortunately there just isn't because of how rare Ambrosia's cancer is. She told us that she would give us time to think about our options and if we chose to go the high dose of chemo route to try and let her know by today as one of the medicines is only made in Italy and would have to be ordered right away so we could get started.
After talking to Wes last night, we have decided to move forward with the high dose of chemo. We feel it is the best option to possibly yield some results more so than any of the other options. Reality has set in and we realize we are truly fighting a battle that we are unlikely to win. However we are not ready to give up on Ambrosia and will fight as best we can to get her cured. It has been hard these past 24 hours to stay positive and not think about what may happen. Tears have continued to be shed and will continue to be I am sure for a couple more days. Then our focus will be on staying positive and moving forward with treatment and enjoying every moment we have with each other.
I have already called the clinic this morning to inform Dr. Cheerva of our decision. I have not heard back yet as to when we will be admitted for the high dose of chemo. As soon as I know I will be sure to communicate it here and on our Facebook page for Ambrosia.
Take time today to let your loved ones know how much you love and care for them, because tomorrow is not promised for any of us. Time is so precious.
Friday last week we went to the clinic for them to check her numbers and also for them to tell us when her next tests would be scheduled, including her important CT scan. After the nurse took Ambrosia's blood they had us immediately go upstairs to the audiologist to try to have her hearing test done again since one of them couldn't be done last time. This time Ambrosia cooperated and we were able to get the necessary test done and it showed no damage so far to her hearing due to the chemo. After the hearing test we had to go back downstairs to the clinic and get her number results. Her numbers were still good. We were scheduled for her heart echo, EKG and CT scan on Monday with sedation for the CT scan.
Monday came and we went to Kosair after dropping our son off at school to get her testing done. We registered and went up to have her heart echo and EKG done. Ambrosia was very fiesty and did not calm down a whole lot during the heart echo. She usually calms down after being held still after a few minutes. She wasn't having any of it this time around. They decided after finishing the heart echo that they would wait to do the EKG after she was sedated and calm.
We headed down to sedation and got checked in there. About 40 minutes before she was due to go back to CT, they had to put a contrast in so they would be able to see the tumors. Once that time passed we were ready to head back to CT. Ambrosia had fallen asleep and I carried her down the hall to where they do the CT scan. Once I laid her on the table for the CT scan she woke up and at that point the nurse had to sedate her so she would be still for the scan. What they gave her worked and Wes and I had to step out while they did the scan.
After the scan we went back to our room in the sedation area and waited for Ambrosia to wake back up. While Ambrosia was still knocked out they did her EKG. They were in and out in less than 10 minutes. After about 45 minutes or so, Ambrosia woke up and we were free to go. We didn't know when we would know the results of her CT scan, but I figured we would know the results on Wednesday when we went in for her appointment.
Later that day on Monday after getting home from picking up our son from school, I got a call from the clinic asking if it would be okay to change the time for our appointment on Wednesday to later in the afternoon. Dr. Cheerva wanted to talk to us about the high dose of chemo with Ambrosia's stem cells. I said that was fine and wondered if they already had the results of the CT scan.
Tuesday came and proceeded like any other normal day. Around 8:30 that night I got a phone call from Dr. Cheerva. She told me she had the results of Ambrosia's CT scan. She said that unfortunately it wasn't good news like they had hoped. The tumor on Ambrosia's liver was stable. It had not changed sized from the last CT scan. Her right lung was still clear, but her left lung had tumors that had doubled in size. This meant the new chemo protocol from the last 2 rounds had not worked like they had expected. She explained they weren't giving up on her yet. She had already met with Dr. Lucas, another oncologist to talk about Ambrosia and options for moving forward. She said she wanted to tell me the news ahead of us meeting on Wednesday so we could process the information and gather any questions we might have to ask. Of course the CT results were not what any of us were hoping for and it was incredibly hard to hear. A lot of tears were shed on my husband and my part.
Wednesday, we got ready for our consult with Dr. Cheerva. We headed to the clinic where they took blood from Ambrosia to check her numbers. After doing that we headed over to register for OMO for the consult, as that is where Dr. Cheerva was meeting us. Dr. Cheerva started off showing us Ambrosia's most recent CT scan and pointed out the tumors in her left lung. She estimated there are about a dozen if not more on her lung. Some of them are bigger than an inch. She then proceeded to tell us our options as our next steps in treating Ambrosia.
One of the options is to give her some treatments only through OMO, which would mean Ambrosia would be home more. Another option was surgery. Before our meeting, Dr. Cheerva said all the oncologists, the radiologist and one of the surgeons met to talk about Ambrosia. They asked the surgeon if he would be able to remove the tumors surgically. He said yes he could. However he didn't know how extensive it would be until he got in there. Unfortunately to remove the tumors from the lungs and the liver it would have to be done in two separate surgeries. The surgeries could be done fairly close together with maybe a week between the two. The recovery time from both surgeries would be a few weeks. They would be concerned with how much time new tumors would have to grow and relocate to new places in Ambrosia's body during recovery. Ambrosia would have to be able to recover from the surgeries before they could start any treatments which is why they are concerned with taking that route. We don't want to end up with new tumors in new places.
Another option is to go outside of Kosair for what Dr. Cheerva said is called Phase 1 and Phase 2. She said the closest place would be Cincinnati for this treatment. It is basically experimental chemo medicines that haven't been tested yet. Phase 1 is trying a new medicine and then Phase 2 would be seeing what the highest amount of that medicine would be that the child could tolerate. Dr. Cheerva said they put the different kinds of cancers into groups, and that meant Ambrosia would be in a group by herself because there aren't even 10 cases of her kind of cancer worldwide right now. She said if we wanted to go that route she would find out the information about how to get us there.
Another option is to proceed with the high dose of chemo with Ambrosia's stem cells used to rescue her bone marrow. This was something that had been in the plans to do once her tumors were gone and not before. Dr. Cheerva said we could move forward with it however there are risks involved. The toxicity of the chemo can put Ambrosia at a higher risk for infections, rashes, and mucoscitis. Ambrosia would likely get sores in her mouth which would deter her from eating. Her numbers would drop to zero and stay there for 2 weeks. This is why we would be hospitalized for up to 6 weeks as she could not be exposed to any outside illnesses at this time because she would not be able to fight them off. Dr. Cheerva said there is also a 5-8% chance that Ambrosia would not survive the high dose of chemo, but because of how well Ambrosia has tolerated all the chemo up until this point she would put her at the lower end of that spectrum. It is a risk she had to tell us.
Dr. Cheerva said if we went this route and Ambrosia's tumor shrunk more than 25% then we could try something that had never been done for Ambrosia's kind of cancer. If the tumors shrunk more than 25% we could try to do a high dose of chemo with bone marrow from a donor. There is an effect from bone marrow donors seen in some kinds of cancer. The immune system from the donor can help fight the tumors and shrink them. This is not the case with all cancers and has never been done before for Ambrosia's kind of cancer. This would be experimental and before it could be done the hospital would have to approve protocol for it and the insurance would have to approve it as well. It would take 2 to 3 weeks for a bone marrow donor to be found as well. All of that depends on how well Ambrosia would respond to the high dose of chemo with her own stem cell rescue first.
Those were all the options given to us. Dr. Cheerva said she wished there was a certain procedure she could point us to that she could say this is the one that will be best and take care of the cancer, but unfortunately there just isn't because of how rare Ambrosia's cancer is. She told us that she would give us time to think about our options and if we chose to go the high dose of chemo route to try and let her know by today as one of the medicines is only made in Italy and would have to be ordered right away so we could get started.
After talking to Wes last night, we have decided to move forward with the high dose of chemo. We feel it is the best option to possibly yield some results more so than any of the other options. Reality has set in and we realize we are truly fighting a battle that we are unlikely to win. However we are not ready to give up on Ambrosia and will fight as best we can to get her cured. It has been hard these past 24 hours to stay positive and not think about what may happen. Tears have continued to be shed and will continue to be I am sure for a couple more days. Then our focus will be on staying positive and moving forward with treatment and enjoying every moment we have with each other.
I have already called the clinic this morning to inform Dr. Cheerva of our decision. I have not heard back yet as to when we will be admitted for the high dose of chemo. As soon as I know I will be sure to communicate it here and on our Facebook page for Ambrosia.
Take time today to let your loved ones know how much you love and care for them, because tomorrow is not promised for any of us. Time is so precious.
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