Feb. 17 Update 1

Connor's 12hr MTX is 52, so lower than last two times. His creatinine dropped to 0.67 which is excellent! Kidneys are working well. Next blood draw is at noon, and I'll update when I know anything.

They will check his hemoglobin again, but anticipate giving him blood before he is discharged, but continuing to hold off as long as he remains asymptomatic.
He's feeling pretty nauseous today, so he's added Ativan to the zofran and the ear patch.  
We got a bit of a rundown on the next phase. (Still have one more admission in the phase we're on). It adds back the Prednisone, but only every other week. PEG asperagenase (so Connor will get the alternative again) and several more spinal taps. It's a two month phase, but this is where ANC numbers drop and patients have the most transfusions, so it can stretch out longer as they wait for his body to recover. Hopefully no admissions, but lots of clinic visits. Long couple of months ahead.
The clinic is working with the hospital to get their patients vaccinated, so we're just waiting for the Johnson & Johnson vaccine to be approved and available.
A mixed bag of news, and expect updates as I get results back.
Thank you to everyone for continuing to check in and send messages. Connor and I read them all and so appreciate your support.
Update 1- 42 hr MTX is 0.74!!! Needs to be under 1, so he finally got this benchmark! Creatinine remains at .62 and hemoglobin is coming up!!

Comments

  1. KinlinFamilyFebruary 17, 2021 at 2:26 PM

    Oh my goodness - so much news and so complicated - it is amazing that people figured out to do all of this ... but thank goodness they have AND this all sounds very positive! Tolerating it better each time! I wish there was more I could do than cheer from the sidelines, but know we are here, sending love and best wishes.🤞🍀 💕K/C/M/L

    ReplyDelete
  2. Nana PenFebruary 17, 2021 at 2:30 PM

    2 people here cheering from the sidelines! So pleased to hear that the numbers are better than last time. Hopefully Connor will be home quicker than last time. Sending you love!💕🙏🤞

    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

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! We also have ins
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