June 3

Clinic day today. Kirk wanted to take him because he didn't like the answer about the anti-fungal, and thought I wasn't being forceful enough. According to Connor he patiently listened to the ID Dr and just accepted what she said. (And I'm not forceful enough.🤣) Still taking it indefinitely.
Yesterday Connor had no anti-nausea meds at all! Major progress!! 
Chemo is affecting him today, and the clinic day was long as they waited for meds and Drs to stop in. He didn't take snacks (Dad took him!), And he didn't ask his Dad to get him food while he was there. I think he waited too long to eat, and an empty stomach still isn't his friend. So he's not feeling well now, and hasn't eaten dinner. He'll head to bed and hope the benedryl helps him sleep.
Medically his blood pressure is quite a bit lower today, which is great! He's still losing weight, but only about 1lb since he left the hospital on Monday. He's definitely eating more, but the dietician reminded him to eat lots of protein, and try and eat lower fat.
IR (radiologist) never checked in, so we are still waiting to hear about when the external drain can be removed. Frustrating to not have anyone to contact about this.

We only have to go to the clinic next week to have his needle changed. His next real appointment is the following Monday.

Comments

  1. Nana PenJune 3, 2021 at 8:57 PM

    Focusing on the positive- one clinic visit next week and 10 days before next real appointment! Have a great weekend!

    ReplyDelete
  2. BeataJune 4, 2021 at 7:06 AM

    Yes, I agree that focusing on the positive is crucial here through the frustrations. I am so happy his surgery seems to have helped so much and it is a real major win for him to not need the anit-nausea meds as much. i really hope you get an answer about the external drain soon 🙏💕🙏

    ReplyDelete
  3. Todd McDermidJune 4, 2021 at 2:16 PM

    Yep - any steps that mean taking fewer drugs are good. And backup for convos with Drs is a good thing. Makes sure you're getting the right messages to/from the Dr, and spreads the load of pressuring...

    ReplyDelete
  4. KinlinFamilyJune 5, 2021 at 9:16 AM

    Wow! Lots of good news to start my weekend. Firstly … Men! 🙄😄 Secondly, so happy to hear Connor is feeling better, eating more, less nausea … and only one clinic day next week!!! Enjoy your week, keep sleeping, and eating, and getting better! 💕K/C/M/L

    ReplyDelete

Post a Comment

Popular posts from this blog

April 21

Connor was so happy to be in his own bed last night. The overnight hydration was generally without incident. Some beeping, but not enough to keep anyone, including Connor, awake. He's keeping his blood sugar under control, but not off the insulin yet. He's not eating much, the chemo is making him pretty nauseous this round. Likely because he doesn't have much else in him. Even the smoothie failed him this morning. Hoping to entice him with some food today, he gets his port de-accessed so he can go home and have the longest shower he wants, and grabbing an additional prescription for anti-nausea that he alternate with the zofran as needed. Such is the life of someone fighting cancer.
Read more

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

Sept 28th - UPDATED 4:00pm

11:30am Heard quickly from the oncologist.  He is reaching out to the pathologist to get the final results to narrow down the diagnosis.  It will lead the way for the rest of the tests. He's going to call back with an appointment time for tomorrow so we can meet to coordinate and ask questions. I'll add more when I know more! 4:00PM - Spoke with Dr. Gregory (oncologist).  They still don't have a full diagnosis, they want to redo the blood work, because the low white blood cell count has some Leukemia indicators and that will change some of the treatments going forward.  In addition, tomorrow, they will be doing a Bone Marrow test and a Spinal Tap.  He will be asleep again, but just in the doctors office this time, not at the hospital.   At this appointment we'll have a chance to ask more questions, and connect with the staff social worker who can help us co-ordinate the doctors, insurance and help arrange a counselor to stay on top of his mental health...
Read more