Mar 23

Connor started Delayed Intensification yesterday. He had a spinal tap, followed by two additional chemos, and started taking oral steroids again. Our hope is that because he's only on for a week, his blood glucose won't be a concern, but he started testing after dinner last night and it was pretty high. He will test his blood before every meal and two hours after for the rest of the week. Hoping we can keep him off insulin, but not sure.
The doctor did warn us that this steroid often causes some severe bone pains. Either as it ends, or when it does. (Perhaps because they don't taper?) In any case they warned Connor not to be surprised.
They aren't starting the leg shots until Friday, but hopefully should be fairly quick appointments. They had us sign to accept new protocols for the study, which now say they can inject through the port instead of the simultaneous leg shots, HOWEVER, because he started on the shots he has to continue. The doctors apologized for basically rubbing salt in the wounds!! Oh well! We are happy to hear the study is progressing and hope it helps others!
Still waiting for Connor to hear about a vaccine. Hopefully we'll get a call this week. I think tracking down the J&J is taking longer than they thought.
Kirk gets his second one on Saturday, and he'll be "fully vaccinated" by the time I get mine on April 9th.
Kaylea's school has announced that the hybrid students will be going back 5 days a week after Spring break on April 12. She'll still have a shorter day, ending at noon and still no eating at school. She is still thrilled!
The sun has been out more this week and it's getting warmer in NJ. We have a couple patio heaters outside now, so I had a friend over on the weekend to share lunch. We've eaten dinner outside quite comfortably as long as the wind doesn't pick up too much! Happy to be out!
Looking forward to finding a new balance of doing more, still safely.
A continued Thank you to all who donate, cook, and leave comments. Knowing we aren't alone in this fight is more helpful than you know!!

Comments

  1. KinlinFamilyMarch 23, 2021 at 7:15 PM

    Wow - yep, just wow! So much you have all had to learn and with a pandemic on your back-burner! Sounds good? Idk ... is a warning of severe bone pain good? At least Connor is prepared and it is making him better. 🍀 I will have to get my scaredy cat butt (traffic) over to NJ when all is well to see and hug you all! Yay for vaccines for you and Kirk (and hopefully, Connor) ... as you know, we be like “what vaccines?” Yay for Kaylea to get some regular school time. And YAY for the warmer weather! ☀️ Enjoy. Lots of Love, K/C/M/L 💕

    ReplyDelete
  2. BeataMarch 25, 2021 at 1:47 PM

    Wow, quite a lot of updates! Really wishing Connor the best and praying for not much pain! Deep breaths. So glad you are having lovely patio time. And yes, more school in person for Kaylea will be great. Looking forward to that for her & all the kids. Love always 💕

    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