Yesterday we went back to OMO to check Ambrosia's numbers and to also see Dr. Cheerva to see what the official PET scan read was and if she was able to email doctor's across the country about Ambrosia. Ambrosia's numbers were pretty good still but she did need a blood transfusion. Dr. Cheerva said that she met with the tumor board where they discussed Ambrosia. Dr. Foley, one of the surgeons, took a close look at Ambrosia's CT scan and PET scan to determine whether or not surgery to remove the tumors was a possibility. This has been discussed before and the issue is always the recovery time from surgery before more chemo could be administered. They are all nervous about giving time for something new to grow while she is recovering. Dr. Foley said he could remove two of the tumors on the bottom of her lung fairly easily. She has a cluster of tumors towards the top that he said he could remove but until he got in there it would be hard to tell what exactly they are all attached to and how complicated it might end up being. So while it is possible, it is still something that is being put on hold for now.
Before I start this next part of news, let me first say how much we appreciate everyone's concern for Ambrosia and wanting to help with suggestions for her well being and care. We know it comes from a place of love and not wanting to see someone so small suffer. We have had several people tell us we should go to St. Jude's hospital. I realize this is a nationally recognized hospital as there are commericals about donating to them and a lot of people know the name. I can't help but get a little taken aback when people tell me we should just up and go there. It makes me feel like my husband and I aren't capable of making the right decisions for our daughter or that her current doctors are somehow lacking. I know this is not the intent but it is how it makes me feel.
With that being said, Dr. Cheerva did contact doctors at St. Jude as well as the children's hospital in Cincinnati. St. Jude is currently not conducting any studies for Ambrosia's kind of cancer. This means they would not accept her as a patient. They have no protocols or studies that would help her in any way. I think a lot of people are unaware that you just can't show up at St. Jude's and they will take you. Unfortunately it doesn't work that way. St. Jude's is no longer a consideration. *I forgot to mention that the doctor's that are treating Ambrosia have sent patients to St. Jude's when there has been a protocol or study being done there that they felt has been beneficial to the patient.
The children's hospital in Cincinnati also told Dr. Cheerva they were not doing a study for Ambrosia's kind of cancer at this time. They did suggest something that Dr. Cheerva had already thought about trying, which is an outpatient chemo medicine that Ambrosia has not had before. She said we could potentially start this chemo medicine within a week or week and a half once Ambrosia's numbers were stable from transplant. She would get this new medicine along with vincristine, which she's had before, for a total of 4 to 6 weeks. We would not have to be admitted during this time. It would all be outpatient. They would monitor her tumors with CT and PET scans every couple of weeks to see if any shrinkage and hopefully no growths occurred.
Dr. Cheerva mentioned she checked with the National Cancer Institute to see if there was anything that might be tried with them. She said there was one new experimental drug that isn't specifically for Ambrosia's type of cancer but it's possible it might have an effect on her tumors. She said normally in order for Ambrosia to receive that medicine she would have to go to a NCI hospital. She was going to try and contact the drug company itself to see if they would be willing to let her have the medicine without us having to go elsewhere. She said she's had success with this for another patient a couple of years ago. Ambrosia would only need a "sprinkle" of the medicine as she is so small, so she is hopeful this will be in our favor in obtaining the medicine.
Dr. Cheerva said that having an Allo (donor) transplant was not off the table. As we have said before, it has never been done for her type of cancer. There are no studies on it for her type of cancer. It would be totally experimental and there is no written protocol for it. For now it is being put on the back burner until Ambrosia has fully recovered from this transplant and we see how she responds to the outpatient chemo and hopefully the new experimental medicine. Of course the hope is that her tumors respond and shrink. It is still a possibility, however we also have to understand that we are currently under palliative care. There is no cure for Ambrosia's cancer. Miracles do happen and Ambrosia very well may be one.
palliative pal·li·a·tive (pāl'ē-ā'tĭv, -ē-ə-tĭv)
adj.
Relieving or soothing the symptoms of a disease or disorder without effecting a cure.
Before I start this next part of news, let me first say how much we appreciate everyone's concern for Ambrosia and wanting to help with suggestions for her well being and care. We know it comes from a place of love and not wanting to see someone so small suffer. We have had several people tell us we should go to St. Jude's hospital. I realize this is a nationally recognized hospital as there are commericals about donating to them and a lot of people know the name. I can't help but get a little taken aback when people tell me we should just up and go there. It makes me feel like my husband and I aren't capable of making the right decisions for our daughter or that her current doctors are somehow lacking. I know this is not the intent but it is how it makes me feel.
With that being said, Dr. Cheerva did contact doctors at St. Jude as well as the children's hospital in Cincinnati. St. Jude is currently not conducting any studies for Ambrosia's kind of cancer. This means they would not accept her as a patient. They have no protocols or studies that would help her in any way. I think a lot of people are unaware that you just can't show up at St. Jude's and they will take you. Unfortunately it doesn't work that way. St. Jude's is no longer a consideration. *I forgot to mention that the doctor's that are treating Ambrosia have sent patients to St. Jude's when there has been a protocol or study being done there that they felt has been beneficial to the patient.
The children's hospital in Cincinnati also told Dr. Cheerva they were not doing a study for Ambrosia's kind of cancer at this time. They did suggest something that Dr. Cheerva had already thought about trying, which is an outpatient chemo medicine that Ambrosia has not had before. She said we could potentially start this chemo medicine within a week or week and a half once Ambrosia's numbers were stable from transplant. She would get this new medicine along with vincristine, which she's had before, for a total of 4 to 6 weeks. We would not have to be admitted during this time. It would all be outpatient. They would monitor her tumors with CT and PET scans every couple of weeks to see if any shrinkage and hopefully no growths occurred.
Dr. Cheerva mentioned she checked with the National Cancer Institute to see if there was anything that might be tried with them. She said there was one new experimental drug that isn't specifically for Ambrosia's type of cancer but it's possible it might have an effect on her tumors. She said normally in order for Ambrosia to receive that medicine she would have to go to a NCI hospital. She was going to try and contact the drug company itself to see if they would be willing to let her have the medicine without us having to go elsewhere. She said she's had success with this for another patient a couple of years ago. Ambrosia would only need a "sprinkle" of the medicine as she is so small, so she is hopeful this will be in our favor in obtaining the medicine.
Dr. Cheerva said that having an Allo (donor) transplant was not off the table. As we have said before, it has never been done for her type of cancer. There are no studies on it for her type of cancer. It would be totally experimental and there is no written protocol for it. For now it is being put on the back burner until Ambrosia has fully recovered from this transplant and we see how she responds to the outpatient chemo and hopefully the new experimental medicine. Of course the hope is that her tumors respond and shrink. It is still a possibility, however we also have to understand that we are currently under palliative care. There is no cure for Ambrosia's cancer. Miracles do happen and Ambrosia very well may be one.
palliative pal·li·a·tive (pāl'ē-ā'tĭv, -ē-ə-tĭv)
adj.
Relieving or soothing the symptoms of a disease or disorder without effecting a cure.
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