A couple of days ago, John's doctor told us things would get worse before they would get better; very sorry to say he was correct. The mucositis has gotten worse; John got a morphine pump. It has definitely helped but swallowing is still barely possible and speaking is difficult. John's nurse says IV feeding won't be necessary if he can get down 2 or 3 Boosts a day; he's trying. Doctor C says we can begin expecting some improvement between Thursday and Sunday. Thursday John receives IV immunoglobulin to provide some basic protection until his new immune system begins to function; that may contribute to some improvement in how he feels.
Of all the annoying and exhausting complications, John has a case of the hiccups that is lasting for days. This happened a couple of years ago as the result of some chemo. It is a side effect of one of the meds he is currently taking. Still being treated but they just keep on keeping on.
Tonight there are some blood clots in the bladder. That can be a side effect of the chemo used to kill the T cells which happened last week. But, a delayed reaction is taking place now as well. For now, the treatment is lasix and if you are reading this, please say a prayer or send a thought for it to work. Ankles are swollen too so it would be just great if the lasix could kill both birds with one stone.
Also, as predicted, John's hair has started to fall out and he has some pretty impressive facial hirsuteness to lose. Hoping to get the hospital pro to shave everything off. We have some concerns (which are reasonable given both of our lack of hand steadiness) about trying to do the shaving ourselves while John has absolutely no immune system. A nick is really not what he needs just now...
John is receiving lots of transfusions of platelets and blood. Many of you have asked how you could help. If you are well and able, making a donation to your local blood bank to benefit other patients who need it would be fantastic.
Michael was limping quite a bit after the stem cell donation last week; he was having some significant hip pain. Happy to report that he is feeling much recovered and that Zacc is also well post donation. Watch the blog for their next posting; I don't know when they will have time to put it up but there is some funny stop action stem cell collection drama to watch when they do.
Many thanks to all for the kind thoughts, prayers, deeds, and cards. Special good thoughts for strength and recovery to our Blue Heron friend who has just been diagnosed with AML,
Still reading, and still thinking of all of you. Sending positive lasix thoughts, and hoping that the hospital barber experience makes for a good story.
ReplyDeleteNone of us can imagine what you are going through, John, so I just want to tell you I'm sending healing thoughts your way. And prayers, too, albeit to a non-dogma affiliated God.
ReplyDeleteI wish you the best and will check back to see how you're doing.
I am reading and praying. All this positive energy will prevail
ReplyDeleteDear Linda:
ReplyDeleteI also subscribe to a non-dogma affiliated God. Thanks for keeping me in his/her loop!
Here's hoping that the "positive force" be with us all.
BTW, Honey Badger don't need no barber; Honey Badger groom himself.
Honey Badger take nap now.
Love to you all.