Hi everyone. SO, here is what's happened since Wednesday... quite a lot.
First of all we have gotten some great news on our fungal pill issue. The insurance has decided to cover the oral form of the medicine under the medical side and it will even be delivered to us. YAY! No more I.V. treatment for this medication.
Also on Wednesday afternoon we heard that Alex's counts were only 500 and did not think they would go ahead with the next series of treatments until they reached 750. Well, after the clinic talked with her Dr. he said NO, that he wanted to proceed as planned. We were told to check in on the 4th floor of the hospital on Thursday morning. Block 3 is about to begin... She just finished Block 1... Why these are out of order is because it used to be a study... Block #1, Block #2 and Block #3. The study is over and they determined that they had the most success with Block #1 first, then Block #3 and then finishing up with Block #2. Why they haven't renamed these? Who knows.
We arrived at the hospital as directed and were told they had Alex a room on the 3rd floor. That is basically the floor for kids with other issues that have them in the hospital... where the 4th floor is for immune compromised kids and the entire set-up is very special for the cancer kids. Being on the 3rd floor did not please me. First of all it's just not a great place for a child with no immune system to be. Kids are on the 3rd floor with all kinds of illnesses. It's not a good place for Alex. SO... I asked our admitting nurse if her doctor was aware of where she was?? She told me that he knew we were there at the hospital but she was sure he didn't know exactly what room. I told her to call and tell him where she was and if he really wanted her on the 3rd floor.... miraculously she was moved to the 4th floor within 20 minutes. YAY!
The doctor came into our room and spoke to us about what would happen over the next 48 hours. She is getting a chemotherapy called Cytarabine (ARC) and that it was an extremely high dose. If anyone remembers any of my previous entries where I gave this type of chemo at home? Well, her regular dose of this chemo was 75mg of Cytarabine and this one that she will receive in 4 doses is 4410 mg. So, almost 59 X the amount that she has had per dose in the past. This really stressed Alex out.
They hooked Alex up on large amounts of fluid. They want her to be going to the bathroom frequently so her kidneys are working all the time. A great thing for sure, but the poor kid is getting no rest. They also wanted to test her levels of everything in her blood and urine before getting started. The first dose of chemo started about 5:00pm yesterday and so far she has gotten 2 doses. It takes 3 hours for the full infusion to take place. She will get the same dose at 5:00 pm tonight and again tomorrow at 5:00am. Then she will go home until next Thursday. The doctor said that after she returns next Thursday it will be unlikely that she'll return home until this phase is over. The nurse said to get ready for a long boring hospital stay. No other chemo is administered during this time. It's all about getting her blood counts to recover. They do have some shot they can give her to stimulate cell growth, but the doctor hasn't really wanted to use these in the past. The shots seem to be part of this Block 3 protocol, so we'll see.
The doctors have just come in and said that Alex's red blood cells have just taken a dump, so she will be getting blood today. Which takes FOREVER! It's so nice they keep an eye on all this stuff.
Well, that's about it for the last few days. Alex has been reading books on her nook (that my awesome friend Kristy sent her) and watching DVDs. People have been writing me and wondering what they can do or get for Alex and it's so hard... I just tell most people that Barnes and Noble gift certificates are the best because she can shop right from her NOOK and get books... DVDs... She isn't a child that wants much more than books.
Thank you to everyone for all the support. You have NO idea what it means to me.
First of all we have gotten some great news on our fungal pill issue. The insurance has decided to cover the oral form of the medicine under the medical side and it will even be delivered to us. YAY! No more I.V. treatment for this medication.
Also on Wednesday afternoon we heard that Alex's counts were only 500 and did not think they would go ahead with the next series of treatments until they reached 750. Well, after the clinic talked with her Dr. he said NO, that he wanted to proceed as planned. We were told to check in on the 4th floor of the hospital on Thursday morning. Block 3 is about to begin... She just finished Block 1... Why these are out of order is because it used to be a study... Block #1, Block #2 and Block #3. The study is over and they determined that they had the most success with Block #1 first, then Block #3 and then finishing up with Block #2. Why they haven't renamed these? Who knows.
We arrived at the hospital as directed and were told they had Alex a room on the 3rd floor. That is basically the floor for kids with other issues that have them in the hospital... where the 4th floor is for immune compromised kids and the entire set-up is very special for the cancer kids. Being on the 3rd floor did not please me. First of all it's just not a great place for a child with no immune system to be. Kids are on the 3rd floor with all kinds of illnesses. It's not a good place for Alex. SO... I asked our admitting nurse if her doctor was aware of where she was?? She told me that he knew we were there at the hospital but she was sure he didn't know exactly what room. I told her to call and tell him where she was and if he really wanted her on the 3rd floor.... miraculously she was moved to the 4th floor within 20 minutes. YAY!
The doctor came into our room and spoke to us about what would happen over the next 48 hours. She is getting a chemotherapy called Cytarabine (ARC) and that it was an extremely high dose. If anyone remembers any of my previous entries where I gave this type of chemo at home? Well, her regular dose of this chemo was 75mg of Cytarabine and this one that she will receive in 4 doses is 4410 mg. So, almost 59 X the amount that she has had per dose in the past. This really stressed Alex out.
They hooked Alex up on large amounts of fluid. They want her to be going to the bathroom frequently so her kidneys are working all the time. A great thing for sure, but the poor kid is getting no rest. They also wanted to test her levels of everything in her blood and urine before getting started. The first dose of chemo started about 5:00pm yesterday and so far she has gotten 2 doses. It takes 3 hours for the full infusion to take place. She will get the same dose at 5:00 pm tonight and again tomorrow at 5:00am. Then she will go home until next Thursday. The doctor said that after she returns next Thursday it will be unlikely that she'll return home until this phase is over. The nurse said to get ready for a long boring hospital stay. No other chemo is administered during this time. It's all about getting her blood counts to recover. They do have some shot they can give her to stimulate cell growth, but the doctor hasn't really wanted to use these in the past. The shots seem to be part of this Block 3 protocol, so we'll see.
The doctors have just come in and said that Alex's red blood cells have just taken a dump, so she will be getting blood today. Which takes FOREVER! It's so nice they keep an eye on all this stuff.
Well, that's about it for the last few days. Alex has been reading books on her nook (that my awesome friend Kristy sent her) and watching DVDs. People have been writing me and wondering what they can do or get for Alex and it's so hard... I just tell most people that Barnes and Noble gift certificates are the best because she can shop right from her NOOK and get books... DVDs... She isn't a child that wants much more than books.
Thank you to everyone for all the support. You have NO idea what it means to me.
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