June 20

Had all of us together as a family today!!! 

Nothing much else has changed. Connor is slowly getting better, but needs time 
Kaylea, Lisa and I are heading into NYC tomorrow for the Immersive Van Gogh exhibit, and spending the night in the city, do will do lots of walking and some touristy things! I won't see Connor until Tuesday evening, so may not update until Wednesday. If you don't hear from us, he's getting better day by day!!

Comments

  1. KinlinFamilyJune 21, 2021 at 1:21 PM

    Looking good guys! 😊Happy time and getting better. 🍀 Enjoy your trip to NYC and I will look forward to Connor’s positive update on Wednesday. 💕K/C/M/L

    ReplyDelete
  2. Todd McDermidJune 21, 2021 at 1:29 PM

    Lookin good. Has he started trying to hack his medical equipment yet? :)

    ReplyDelete
  3. BeataJune 21, 2021 at 6:39 PM

    So glad you had this quality family time together and also that you went to the immersive Van Gogh exhibit. Looking forward to your next update! 😃

    ReplyDelete

Post a Comment

Popular posts from this blog

June 24

First of all Connor is no longer in pain, mouth is cleared up, weaning off the meds (slowly to avoid withdrawal). But Connor has lost all patience. He's still sweet and kind and trying so hard, but he's back to having two modes.... Sleeping or puking. GI was brought in today to discuss nausea and suggested abdominal breathing and getting up and moving. I don't disagree that more meds are not necessarily the answer, they so far seem to put him to sleep, but if he stands, he pukes. (Not even entirely sure the nausea and vomiting are connected, the vomiting happens very suddenly and very violently.) Hard to walk around if you are puking. He is positive for C diff, another infection, so another antibiotic that once again has nausea as a side effect. Honestly don't know what makes him sick. Meds? Pseudocyst? Chemo? All of the above? Doctors don't know either. I begged the staff to do more, that this isn't any quality of life.... Hopefully they find something.
Read more

Mar 30

Back in the clinic yesterday.  Connor had two chemos and the leg shots.  (And they found a Tiana bandaid for Connor!)  Last week went pretty well. Sunday night Connor's blood glucose spiked, and he took the long acting Lantis overnight to bring them down. They haven't gone back to normal yet, so he continues to test before every meal and two hours after. But has otherwise managed to stay off insulin with some diet control. He starts steroids again in one week. Leg shots continue Wed and Friday this week.   Kirk got his 2nd shot on Saturday, uneventfully, thank goodness. No side effects for him at all.  A welcome change from the overwhelming side effects Connor gets to deal with daily!  He takes at least three additional medications to counter the side effects of the steroids and leg shots. Otherwise Connor's numbers are all looking good. His ANC is remaining high, hemoglobin and platelets are up, and the WBC is up (directly linked to steroids). He's be...
Read more

Dec 31- New Years Eve

Kirk took Connor to the clinic yesterday. It was busy, and therefore slow. They did blood work to check his enzymes again, but we already know they are elevated because Connor is in pain again. He's managed the last 24 hours with Tylenol, and lots of laying down. The pain seems to lessen when he's at least partially laying down. Tomorrow is the last asperagenase shot, hopefully for awhile. It's the end of the 2nd phase, so he's scheduled for a bone marrow test on Monday morning.  We have no information on what the next phase brings as of now. They'll confirm after the bone marrow results. They did assure me that he can be off on Tuesday for his birthday 🎉.  Here's hoping that 2021 brings continued remission 🧡 Best wishes to all our family and friends for the new year.
Read more