A couple of weeks ago I posted a link to an article on Ambrosia's Facebook page about a doctor in Boston starting research on rhabdoid tumors. This morning I contacted the doctor in charge of the research to see if he was wanting to know patients who have rhabdoid tumors. I told him about Ambrosia and where we are in her treatments and care. He responded fairly quickly and thanked me for getting in touch with him and said he would be happy to discuss Ambrosia with her oncologists or me by phone. I passed on his information to the nurse practitioner to share at their afternoon rounds. They are going to be getting in touch with him to see what information he may have to help regarding Ambrosia and to share her history with him in the hopes that it may help his research. If doing this in anyway helps another family not have to go through this and hear there isn't a cure then it is worth doing in my opinion.
This morning Dr. Lucas made sure I was okay with starting the chemo today even though she had an active infection. He said he didn't forsee any issues but it couldn't be guaranteed. We are all anxious to start chemo without anymore delays. Some time passed and the nurse practitioner came in with a dilemma. The IV line they put in Ambrosia's hand couldn't be used to administer the chemo. There was risk involved if the IV wasn't completely inserted in a vein and having the chemo seep out into other areas and become an irritant. The plan then became for the IV team to come and put in a PICC line that would be threaded through a vein and up Ambrosia's arm. This line they could administer the chemo and also get her normal blood counts from. If they weren't able to do it today then they were going to do it tomorrow.
Unfortunately there was an issue with getting everyone assembled to be able to get the PICC line placed. The plan now is to put a temporary central line in that Ambrosia had when she was first diagnosed that goes under her clavicle up by her shoulder and neck. This is temporary and can be pulled out at the bedside. This way chemo could start once it was placed. The surgery is scheduled to take place tomorrow for this line. They would be able to start chemo after it's placed and again on Sunday. Then the experimental chemo would be administered on Monday.
Tuesday, Dr. Lucas decided that Ambrosia will have a port placed. This is different from her broviac line. Ports are less likely to get infections which of course we want. This will be a new experience for us as I know a lot of kids are scared to have their port accessed. We will face this challenge head on though and I will learn even more than I have already.
I am going to end this entry with thanks. Thank you to everyone for your support. It means a lot to our family. We appreciate everyone that has taken an interest in Ambrosia and her story.
This morning Dr. Lucas made sure I was okay with starting the chemo today even though she had an active infection. He said he didn't forsee any issues but it couldn't be guaranteed. We are all anxious to start chemo without anymore delays. Some time passed and the nurse practitioner came in with a dilemma. The IV line they put in Ambrosia's hand couldn't be used to administer the chemo. There was risk involved if the IV wasn't completely inserted in a vein and having the chemo seep out into other areas and become an irritant. The plan then became for the IV team to come and put in a PICC line that would be threaded through a vein and up Ambrosia's arm. This line they could administer the chemo and also get her normal blood counts from. If they weren't able to do it today then they were going to do it tomorrow.
Unfortunately there was an issue with getting everyone assembled to be able to get the PICC line placed. The plan now is to put a temporary central line in that Ambrosia had when she was first diagnosed that goes under her clavicle up by her shoulder and neck. This is temporary and can be pulled out at the bedside. This way chemo could start once it was placed. The surgery is scheduled to take place tomorrow for this line. They would be able to start chemo after it's placed and again on Sunday. Then the experimental chemo would be administered on Monday.
Tuesday, Dr. Lucas decided that Ambrosia will have a port placed. This is different from her broviac line. Ports are less likely to get infections which of course we want. This will be a new experience for us as I know a lot of kids are scared to have their port accessed. We will face this challenge head on though and I will learn even more than I have already.
I am going to end this entry with thanks. Thank you to everyone for your support. It means a lot to our family. We appreciate everyone that has taken an interest in Ambrosia and her story.
RSS Feed