It's 4:07pm now and we just finished a 2-hour meeting with the doctor, nurses, social workers, spiritual workers, physicians. The doctor, with the spritiual worker and my parents are now talking to Alwin about the facts in room 15220.
There was a total of 12 people in the meeting, including my cousins, Shaina and Sonya, my parents and me. (no, Alwin wasn't in the meeting.)
There have been messages passing around the family and we have been thinking the hospital has given up on Alwin, slowly decreasing dosages of medication, stopping treatments without Alwin's or our permission, in other words, slowly 'killing' Alwin.
The misunderstanding has cleared up a bit in the meeting.
The fact is: Alwin's GVHD is untreatable; the hospital has done everything they can, they have given him all the treatments, all the medications they have. If Alwin's GVHD WAS treatable, his body would have reacted to the treatment within, at most, a week (usually in a few days, the doctor said)
The doctor admited that there were some sort of miscommunication between the nurses about extra pills being given to Alwin; however, there were reasons to the stopping of the Etanercept, the Octeontide, and the sudden decrease in size (of the bag) of the nutrition given to Alwin.
The fact is, again, Alwin's GVHD is untreatable, "there is no point in continueing the treatment if Alwin's body is not reacting", the doctor said, they WOULD give him the eighth (the last) dosage of Etanercept IF there was an improvement, and since Alwin did not improve over these WEEKS, they decided not to give his last dosage of Etanercept because it wouldn't change a thing. BUT they did apologize to us that they should have informed us about these decisions because Alwin has been having hope that they would keep giving him injections.
About the stopping of Octeontide, which is a pill that helps with diarrhea and GVHD. Alwin hasnt been comfortable with swallowing pills. As Alwin's gut hasnt' been improving, the Octeontide wouldn't help a lot either. Alwin's gut is very eroded now and it has been constantly springing out blood inside him, the Octeontide would only help him go to the bathroom a little less frequent, but it wouldn't help with his bleeding; also, the effectiveness of Octeontide of treating GVHD is "a drop in a bucket" comparing to Entanercept. Therefore, they have decided to stop giving the Octeontide; the stopping of Octeontide would not affect Alwin's situation at all.
If some of you have noticed, Alwin has been given a smaller bag of nutrients; this is to prevent more puffiness of Alwin. Alwin has been given too much fluid, there was a little fluid in his lungs, and he had been having puffy feet, face, etc. The smaller bag of nutrients contain the SAME amount of nutrients with the big one, just less fluid, more concentrated; so such change is actually good for Alwin; they are not trying to starve Alwin.
Anyhow, we have all decided that it's time to tell Alwin the truth, slowly, by a doctor, that there WILL BE NO MORE treatment they can give to him. There WILL BE NO IMPROVEMENT, he is not going to get better. They will be asking for his decisions, too, i believe. Alwin, himself, knows that he is very prone to infection; his WBC count is 0.8 today. Robert, the nurse, told us that, patients who come to this stage, usually dies of one of the two things: a very horrible infection, or a very severe hemorrage.
"you need to start creating your memories now," Robert said, "bad memories will fade in time, you will not stay like this in the rest of your life".
My mom broke into tears, as expected, but she told us it will be the last time she's going to cry because she doesn't want Alwin to see him cry. But Robert has mentioned that if Alwin needs to cry, cry with him or let him cry, it's okay to have a little nosebleeding from blowing his nose, they would give him platelets to fix that.
It's very important that we let Alwin stay as comfortable as he can.
He already knows his disease is untreatable.
We don't know when will the time come, it might be tomorrow, weeks, or months.
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