Our journey through leukemia

Day 29.... We are checked in at the Valerie Center awaiting Connor's procedure. It's suddenly like a ghost town here! The nurses are actually all wearing headband ears for Halloween, it is a pediatric unit after all! Rainy here in Morristown, but it was snowing in Randolph when we left this morning.  Nothing can dampen my spirits today. I know that the bone marrow today will show a MRD of less than 0.01, I just have to wait until Tuesday to verify!  Connor takes his last dose of Prednisone tonight and can reduce the insulin tomorrow to only once a day... So many positives!!! If everyone can send good thoughts and prayers I know we will get the outcome we want!!

Thankfully this week was uneventful! Connor was feeling good, his blood sugar numbers are hovering at a normal 100, and he seems to bounce back from the weekly chemo pretty well. He's usually tired on the weekend, but starts feeling a bit better as the week goes on. I expect this week to be more of the same.  Spoke to the staff today and his last dose of Prednisone will be Friday evening next week. He'll have a spinal tap and bone marrow draw first thing in the morning. (Which means we are there at 8:30, he'll have not eaten, and they'll take him in about 10! ) Definitely taking lunch with us next week.  We have a week off after that. We have to wait for his results come in from the bone marrow test and spinal tap before they set the schedule for the next phase. Hopefully have those on Tuesday.  We are looking for MRD (minimal residual disease) of less than 0.01, meaning he's in remission and the chemo is working.  I'm sure we'll meet with Dr. Gregory that w...

Enjoyed a wonderful Thanksgiving dinner last night. I spent the morning walking 12 miles around the Randolph trails with friends (to be fair we stopped for breakfast at 6 miles!)  Connor spent a good part of the afternoon calculating carbs and serving sizes, and managed his insulin perfectly.  We dry brined the turkey this year, on the advice of my talented sister-in-law, which was very good. Very moist, with crispy skin. For anyone interested,  Dry Brined Turkey Here we are dressed in what I call "zoom ready'" dress code. Looks great for a picture at the table, but we're also wearing pajama bottoms!!  After dinner we had a family game and then a hot tub. Altogether a lovely evening! No appointments, or cancer stuff happening until Friday when we go back for chemo. Two more rounds for the induction phase. This round doesn't seem to affecting Connor too much. He hasn't felt sick, and other than being tired, very few symptoms at all, thank goodness. ...

Back at the clinic at The Valerie Center for another round of chemo. Connor's blood levels look good (sugars too, but they are looking at red and white blood counts, platelets, and ANC) ANC is still good, and so are platelets, so no additional treatments or transfusions needed right now. (Yay!) Right now, no additional need to come to the clinic again until his next chemo treatment next Friday, so that's good too! We head to the Endocrinologist later this afternoon and hopefully his blood sugar is looking more controlled. Another good appointment! Connor's blood sugar has regulated enough that he can stop testing after he eats, and can adjust some of the carb calculations. Next appointment is after he's off the Prednisone, and we already have details to adjust the insulin as soon as he stops taking it. And no more 4 am testing!! I'm so happy about that one! Now home -smelling an amazing chili in the Crock-Pot, and enjoying a drink! (Thank you Tracey!) Why is sitting...

  No news is good news today!  Connor's blood sugar has leveled to a normal range, we are counting carbs like champs, and it's another day of him feeling good.  Hope to have many more! Nothing new until Friday now and we'll be at the clinic all day!  I'll update when I have news. A continuous thanks to everyone for your help and support.  Your comments, prayers and everything are so appreciated! 🧡

So far, today is just a regular day! Yay!!! Connor did some school work, Kirk and Kaylea both did school work, and I worked on the piles of laundry from last week. Connor's blood sugar is a bit lower today, but it always seems higher in the afternoon so we'll see how it progresses. Connor is not feeling so tired even though we wake him every 4 hours at night. He's up to 900 steps a day instead of 100 last week while tethered to an IV pole! Otherwise, nothing to report.  Nothing makes me happier!!

Had a wonderful evening last night just having our family back under one roof.  I do have to say, whatever it is, we probably don't pay nurses enough! I almost (but didn't) forgot his meds. I now have calendars, charts, and spreadsheets to manage every thing! These are Connor's meds and supplies for this month! His sugars were in a more normal range at midnight and 4am, and that's good. Hopefully we've got the amount of slow acting insulin at the right dose now. Connor is quickly learning that he's actually sick. He tried to follow a normal routine this morning, including wanting to cook his own eggs.  After standing for about 20 min and walking downstairs once he almost passed out. Light-headed, nauseous, he said he felt hot, but clammy and sweaty. Lying down helped.  He finally managed to sit up and eat. I've suggested he let us help him more, but until that happened he really wanted to just be "normal". I'm hovering between helpi...