We got up really early on Thursday morning to come register to be admitted for our high dose of chemo with stem cell transplant. We were able to register with no issues and made our way up to 7West. We are currently in the back where the transplant rooms are, but unfortunately they are the smaller rooms. One nurse mentioned in May these rooms will be renovated like the rooms at the front, so hopefully they will be able to make them a bit bigger.
We were greeted by our 2 nurses that would be taking care of us and got settled in to our room. Awhile later the nurse practitioner came to see us. She said that Ambrosia's last GFR test on her kidneys showed they were functioning at a 91 out of 100. That is still a normal range, however the protocol for the high dose of chemo meant they couldn't give the full dose that they wanted. They wanted to put a catheter in so they could collect some urine to check the kidney function again. This meant putting the chemo off for a day.
So yesterday ended up being an easy day. We had a lot of visitors, including Child Life, the child psychologist, and physical therapy. Child Life told us about a new program called Beads of Courage. For everything Ambrosia has done she gets a different bead to represent it. Since we of course had been diagnosed in October she had a lot to catch up on. The Child Life person asked us to estimate how many times different things may have been done so she could go start our necklace. Ambrosia has 6 big clay beads that represent 100 things each that she has gone through since diagnosis. She has 6 star beads to represent surgeries (which I think I estimated wrong and she's only had 5! oops!). There are 3 beads with hearts on them to represent the 3 times we have been admitted to the ICU. One bead is a head and it represents hair loss. There is a dark green bead that represents when they collected her stem cells. There is a yellow bead to represent our stay overnight last night. And today the chaplain checked in on us and gave us a bead to represent his visits.
There is a daily bead journal for me to check off things that have been done each day so we can get a bead to represent it. At the end of treatments we will have a cool way to show people all that Ambrosia has gone through and what each bead means. Between yesterday and today we have 5 new beads to add.
Today the nurse practitioner came to see us and said that her kidney function had risen but to only 97. They decided even though it wasn't the 100 or better score they wanted they were going to go ahead and start with the full high dose of chemo because they didn't want to delay treatment anymore. So around 1:40 this afternoon her chemo was brought in and was started. So far Ambrosia hasn't had any issues. They gave her Zofran before they started to help curb any nausea that might develop but she will still likely get sick at some point during this treatment. I just have to let them know and there are other medications they can give to help keep her from throwing up.
Her chemo will run for 4 days. Then for 3 days she will have a rest. Then they will transplant her stem cells back to her. After that it will be watching her and making her as comfortable as possible as her numbers drop to zero and stay there for a couple of weeks. Once her numbers are back up and stable we will be able to leave. I do not know at what point during our stay they will do a scan to see if this treatment was successful. Normally a scan is done two weeks from the start of chemo. I would imagine this rule will still be followed but I can't be certain. As soon as I know when it will be I will be sure to communicate it as we will need a lot of prayers and thoughts for good results!
Ambrosia has a molar coming in that is making her a little cranky at times. Unfortunately she can't be given Tylenol to help with the pain because they don't want to mask a fever. I can give her some Orajel and hopefully that will help. It may be hard to differentiate her pain from her tooth and if she's feeling bad because of the chemo. We've got a rough several days ahead. Keep the prayers and thoughts coming. We appreciate each and every one!
We were greeted by our 2 nurses that would be taking care of us and got settled in to our room. Awhile later the nurse practitioner came to see us. She said that Ambrosia's last GFR test on her kidneys showed they were functioning at a 91 out of 100. That is still a normal range, however the protocol for the high dose of chemo meant they couldn't give the full dose that they wanted. They wanted to put a catheter in so they could collect some urine to check the kidney function again. This meant putting the chemo off for a day.
So yesterday ended up being an easy day. We had a lot of visitors, including Child Life, the child psychologist, and physical therapy. Child Life told us about a new program called Beads of Courage. For everything Ambrosia has done she gets a different bead to represent it. Since we of course had been diagnosed in October she had a lot to catch up on. The Child Life person asked us to estimate how many times different things may have been done so she could go start our necklace. Ambrosia has 6 big clay beads that represent 100 things each that she has gone through since diagnosis. She has 6 star beads to represent surgeries (which I think I estimated wrong and she's only had 5! oops!). There are 3 beads with hearts on them to represent the 3 times we have been admitted to the ICU. One bead is a head and it represents hair loss. There is a dark green bead that represents when they collected her stem cells. There is a yellow bead to represent our stay overnight last night. And today the chaplain checked in on us and gave us a bead to represent his visits.
There is a daily bead journal for me to check off things that have been done each day so we can get a bead to represent it. At the end of treatments we will have a cool way to show people all that Ambrosia has gone through and what each bead means. Between yesterday and today we have 5 new beads to add.
Today the nurse practitioner came to see us and said that her kidney function had risen but to only 97. They decided even though it wasn't the 100 or better score they wanted they were going to go ahead and start with the full high dose of chemo because they didn't want to delay treatment anymore. So around 1:40 this afternoon her chemo was brought in and was started. So far Ambrosia hasn't had any issues. They gave her Zofran before they started to help curb any nausea that might develop but she will still likely get sick at some point during this treatment. I just have to let them know and there are other medications they can give to help keep her from throwing up.
Her chemo will run for 4 days. Then for 3 days she will have a rest. Then they will transplant her stem cells back to her. After that it will be watching her and making her as comfortable as possible as her numbers drop to zero and stay there for a couple of weeks. Once her numbers are back up and stable we will be able to leave. I do not know at what point during our stay they will do a scan to see if this treatment was successful. Normally a scan is done two weeks from the start of chemo. I would imagine this rule will still be followed but I can't be certain. As soon as I know when it will be I will be sure to communicate it as we will need a lot of prayers and thoughts for good results!
Ambrosia has a molar coming in that is making her a little cranky at times. Unfortunately she can't be given Tylenol to help with the pain because they don't want to mask a fever. I can give her some Orajel and hopefully that will help. It may be hard to differentiate her pain from her tooth and if she's feeling bad because of the chemo. We've got a rough several days ahead. Keep the prayers and thoughts coming. We appreciate each and every one!
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