Day 22 was fine. They did a bone marrow aspirate, an LP and a bone marrow biopsy on Amaey because his counts were really low and they were worried that they would not get good marrow just from the aspirate.
He recovered fine and luckily did not get a fever after the procedures.
Amaey is in partial remission so they started his 2nd induction on Friday as planned. For this round, he will get 3 days of oral meds and 8 days of chemo. His count will be wiped out so he won't be able to go home until he recovers.
Friday was the craziest day in the hospital, as I was giving Amaey a shower Dr. Dahl stopped by and told me that there was a slight kink, the drug Daunorubicin that Amaey was supposed to start getting was unavailable. I was like, what do you mean unavailable? What does that mean? How is that possible? He said there was nothing to worry about, they are thinking about giving him an alternative drug Idarubicin. As soon as Amaey was dressed, I started researching for these two drugs to find out if Ida was as good as Dauno. I called my sister-in-law right away, called Davina to look into these two drugs. I saw that he would be more immunosuppressed with this drug otherwise it wasn't very different form Dauno. In fact Dauno was harder on the heart.
While I'm still researching all this, another attending stopped by to ask me to sign that we were ok with Amaey getting Ida instead of Dauno. I hadn't done all my research and hadn't heard back from everyone so I asked to sit on it for a while.
Then Amaey's doctor Dr. Wei stopped by to talk about all this and while we were talking he told me that if Amaey got Ida he would potentially drop out of the protocol. I think my tiger mom instincts were flared at that. I couldn't believe it that the previous two doctors failed to tell me about this main fact. I couldn't believe that after making such a big deal about Etoposide and how we needed to give that if we wanted to continue on the protocol and all that nonsense.
I asked Dr. Wei, why they did not save this drug for Amaey if he is so high risk and they new 3 weeks ago that he was supposed to get it.
Long story short, within 2 hrs of time a huge web was cast from the hospital room to Sunnyvale, Detroit, New York, and Canada. People were frantically looking for this medicine because we said that either an amendment needs to be made in the protocol or we need to get this drug.
While we are going through this search it was so exhausting. Not something a parent should be worrying about. My sister-in-law found 2 hospitals that had the drug, we passed the info to Dr. Wei. Saturday around 2:30pm we finally get an email from Dr. Wei that the drug has been shipped to out hospital from Children's hospital in Boston.
I felt so relaxed suddenly, did not realize how tensed and upset I was. The big deal about staying on the protocol is the option to get something called a NK cell transfer for Amaey. For this procedure they take the worst of the parents blood match and then do the BMT.
All of this is a trial, what Amaey has is very rare but if there is anything out there that can help his chances, we will do it all.
He recovered fine and luckily did not get a fever after the procedures.
Amaey is in partial remission so they started his 2nd induction on Friday as planned. For this round, he will get 3 days of oral meds and 8 days of chemo. His count will be wiped out so he won't be able to go home until he recovers.
Friday was the craziest day in the hospital, as I was giving Amaey a shower Dr. Dahl stopped by and told me that there was a slight kink, the drug Daunorubicin that Amaey was supposed to start getting was unavailable. I was like, what do you mean unavailable? What does that mean? How is that possible? He said there was nothing to worry about, they are thinking about giving him an alternative drug Idarubicin. As soon as Amaey was dressed, I started researching for these two drugs to find out if Ida was as good as Dauno. I called my sister-in-law right away, called Davina to look into these two drugs. I saw that he would be more immunosuppressed with this drug otherwise it wasn't very different form Dauno. In fact Dauno was harder on the heart.
While I'm still researching all this, another attending stopped by to ask me to sign that we were ok with Amaey getting Ida instead of Dauno. I hadn't done all my research and hadn't heard back from everyone so I asked to sit on it for a while.
Then Amaey's doctor Dr. Wei stopped by to talk about all this and while we were talking he told me that if Amaey got Ida he would potentially drop out of the protocol. I think my tiger mom instincts were flared at that. I couldn't believe it that the previous two doctors failed to tell me about this main fact. I couldn't believe that after making such a big deal about Etoposide and how we needed to give that if we wanted to continue on the protocol and all that nonsense.
I asked Dr. Wei, why they did not save this drug for Amaey if he is so high risk and they new 3 weeks ago that he was supposed to get it.
Long story short, within 2 hrs of time a huge web was cast from the hospital room to Sunnyvale, Detroit, New York, and Canada. People were frantically looking for this medicine because we said that either an amendment needs to be made in the protocol or we need to get this drug.
While we are going through this search it was so exhausting. Not something a parent should be worrying about. My sister-in-law found 2 hospitals that had the drug, we passed the info to Dr. Wei. Saturday around 2:30pm we finally get an email from Dr. Wei that the drug has been shipped to out hospital from Children's hospital in Boston.
I felt so relaxed suddenly, did not realize how tensed and upset I was. The big deal about staying on the protocol is the option to get something called a NK cell transfer for Amaey. For this procedure they take the worst of the parents blood match and then do the BMT.
All of this is a trial, what Amaey has is very rare but if there is anything out there that can help his chances, we will do it all.
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