Update:
I’m frustrated. Amora’s schedule for chemo is critical. (At least that’s what’s been stressed to us since the beginning). Amora was scheduled to get her weekly chemo medication on thursdays. First weekly chemo, administered on a Thursday. Then we had a complication- her port infection. This pushed back her chemo medication to the following Monday. The plan was to slowly bring back her weekly chemo medication by a day until we were close to the original schedule. That 3rd dose was supposed to be today.
Saturday: Amora had stomach pains, nausea, cheek pain and didn’t want to get out of bed. My poor girl, I asked for Tylenol and some nausea medicine to try to make her more comfortable. Laid in bed with her all day, prayed with her, cried with her and hugged her.
Sunday: today’s chemo day. The oncologist came in this morning and we discussed the plan to administer that medication today. Calm uneventful morning. That same doctor came in a couple hours later with a serious demeanor. I immediately knew something was wrong. He told me that her weekly medication was incorrectly administered late Friday evening. 4 days after her last dose. Again, off schedule. How does this happen? Why was it administered late and why was the medication released in the first place? There were notes in the system that indicates when her last dose was and when the next expected dose is planned. This is life and death for my 3 year old daughter we are dealing with. Such disregard for such a powerful drug! Slipped thru the cracks and administered to my 3 year old daughter 20 minutes after I left to attend to Elijah. I didn’t even know about it until today. The heat that ran through my blood today could light this world on fire.
How she felt saturday makes sense now. I can’t believe I was unaware.
The attending oncologist apologized (he wasn’t the attending oncologist on friday). He was sincere and stated that this is something that they intend to discuss in depth with the team and uncover the oversight so that this doesn’t happen to Amora or any other child again. I’m concerned about the toxicity, I’m concerned about her treatment plan. This isn’t the first time something like this has happened either with administering drugs/transfusions to Amora. I caught the first times but now when it really mattered, I couldn’t do anything about it. I’m so upset. The attending oncologist assured me that it is not toxic to her and that the plan is to maintain schedule for the remainder of induction. The expected result is still the same.
I plan to talk in depth about it tomorrow with the attending oncologist, the cancer treatment coordinators and find out how this exactly happened.
Lord I pray these complications have no affect on Amora’s little body. I pray that her leukemia is eradicated from her body completely after induction and that it never rears its ugly face again. I pray my girl lives a long healthy life with lots of memories to make. I pray that she grows old and gray and never forgets how strong she is.
Thank you Lord for this time I have with Amora. I pray that our time together is for as long as I live. I pray that you continue to watch over her and fill this room with your presence. I trust you Lord.
Why does this have to be such a chaotic path. This is supposed to be the best hospital. I love her so much. Please pray for us.
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