Our journey through leukemia

Quick visit to the clinic today. All of Connor's numbers look good so we're ready to start last round on Monday.  Quick stop for yet another COVID test and we were home in about 2 hours. Beautiful sunny day today, so I got a nice walk in with a friend. Great to get some Vitamin D!! More on Monday!

It's finally time for the shave. Every time he showers his hair is falling out in clumps, and it's becoming very patchy (was really thinning fairly evenly before now). The MTX was definitely not great, so with one last round looming we decided it was time to just shave it off! David Ezra Salon & Spa were fantastic! Went early Sunday morning when there are very few clients, and there was a separate private room for us so Connor wasn't around anyone else. He really didn't just want his Dad to do it, so it was great that they were so helpful, and felt safe! I tried to get him to keep this fluffy mohawk, but just got the "uh-huh" in teenager sarcasm!! He's got quite a nice shaped head!! He's in fairly good spirits about this, considering.  I offered to join him, but I think that was drawing more attention to it than he wanted. In any case he declined. He's pretty sure it'll grow back in about 3 mo

Finally got his MTX results (from last night) when I called this morning at 8am. It needed to be under .4, and it's .2 so all is good!! Even though his hemoglobin came up, they want to push two units of blood, but they want to wait to give him the maximum hydration today to continue to expel the MTX. Hydration continues for full 72 hours. They'll start transfusion at 4pm, and discharge him at 7. We're hopeful that means they'll leave by 8pm. (Even knowing hours ahead they never seem to be able to have paperwork ready!) It's snowing with no signs of stopping, expecting around 8".  So for those who know me well, you know I'm home waiting anxiously, and Kirk is at the hospital so he can drive home safely!! So glad that this one went on time, although it does mean they'll go back to a full strength dose the next time. (We were still on a 25% reduced dose again) I expect we'll have the week off next week, with only a clinic visit Friday likely for blood

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 hos

A fairly uneventful day. Connor is exceptionally tired, his hemoglobin has dropped again, but we are delaying a transfusion for as long as possible. We wanted to finish the MTX first and they can't run blood at the same time as the hydration. And we really don't want to stop hydration. So if necessary they'll add an IV to infuse blood. As long as he's only tired, we'll continue to delay. His retric number is high, he is making his own red blood cells, just slowly. They took blood at 6, but unfortunately we don't have any results yet. ( And why I delayed posting tonight). We'll get them in the morning now. He's always made the first milestone at 12 hrs, so not worried about that one, and his creatinine this morning had stayed at 0.7, so a good sign. Noon tomorrow is 42 hours, 6pm is 48 hours. I'll post again tomorrow.

Connor was admitted again for next round of high dose Methotrexate (MTX). Kirk took him today, and because of a pending ice storm, I didn't go visit this evening. His numbers were good this morning, so they started with a spinal tap and dose of regular methotrexate. He's back in the same room he's had every time this round and they started the infusion at about 6pm. Before that they were hydrating and getting the pH in his urine corrected. He was a bit nauseous this afternoon, but not too much. Hopefully they can keep it at bay. They are keeping the dose at 75% and increased hydration again in hopes that this time he can clear it on time in the 48 hours (with discharge at 72 hours). Fingers crossed!

MTX is 0.04, so he's off the Leucovorin. We start the next round Monday, starting with a spinal tap first and then another admission. 2 down, 2 to go.

His MTX is exactly 0.1, and because it's supposed to be under, they are doing another draw at 1pm. Two pieces of great news: First, the hospital is finally testing in house so we should no longer wait 5 hours for the results. Second, he's going home!!!  If the MTX is below 0.1 then he goes home unencumbered. If it stays at 0.1, then he needs to continue Leucovorin every six hours, likely until Monday when we can come back to the clinic for additional testing. Either way they agree that no additional hydration is needed, he just has to keep up drinking water!  Very pleased to have only stayed one additional day this time, and as we have another storm coming tomorrow, glad we can hunker down, maybe watch the super bowl, and just have the family together. Right now they are only calling for 6"-8" but heavy snowfall of 2"/hr during the day!  Updated - we are home. Surprisingly his MTX actually went UP! It was 0.11 so he's on Leucovorin every six hours, and just k

We have no new information. They drew blood at 6pm, but we don't have results yet. Kirk spent the day with Connor, he's feeling okay. He got a new anti-nausea patch and he said that's helping.  He had a nosebleed today, it lasted a bit longer than normal but it clot on it's own so they aren't too concerned. Given how dry and cold it's been, this isn't unusual for Connor. If I get info tonight, I'll update, but I'm not really expecting it. Update MTX is 0.18, so they are going to do another test tomorrow morning to see if he can go home tomorrow. Hemoglobin and Platelets are all looking good, as is creatinine! Much more positive, even if still a bit delayed from ideal.

 5:30 last night was 24 hours after MTX started, and his numbers needed to be under 120.  He was 60.69.  Lower than last time of 66, but no idea if this an indication of the next numbers or not.  They'll draw before noon at hour 42 for another level.  That one needs to be under 1.  His creatinine has gone up to 1.1, but at this time it's not a cause for concern.  It's lower than last time, so that's positive.  We have not yet started Leucovorin. He's definitely not feeling as well this time.  He has both a lack of hunger and slight nausea.  He's wearing a ear patch to help, as well as regular doses of zofran, so hopefully it holds the puking at bay.  He's able to enjoy smoothies so we've been bringing those in so he has something. (Not that he's getting any exercise beyond walking the 10 steps to the bathroom every hour!) He and I have been playing card games: cribbage, uno flip, and monopoly deal.  One of the memb ers of the child services team Kris

Not much to report. The MTX is still dripping, they'll do the first test at 5:30pm, hour 24. Connor had a quiet night, and everything is going as suspected right now. They increased his hydration, and lowered his dose, and his urine output is doing well. (He's surpassed the floor record with 11 liters in 12 hours!) So now we wait...

Kirk took Connor to the clinic today so as I get info, I'll add updates. His ANC came soaring up to 990, so he's being admitted for the 2nd dose of Methotrexate. His creatinine is still holding at 1, so they will proceed with a 25% reduced dose.  It likely won't start until later this evening, as they'll spend the day making sure he's hydrated. I will visit tomorrow as we only dug out one car from yesterday's storm. We got about 26" and drifts were over 3 ft.  Main roads were wet and clear so no issues for travel.