Our journey through leukemia

The Valerie Center is closed tomorrow for winter storm Orlena. Forecast is for 15"-22". Kaylea has a snow day, as they are anticipating power outages too. Firewood is stacked, groceries are stocked and no one has to be anywhere. I'll update after appointment on Tuesday.

Kirk took Connor to the clinic on Thursday. His MTX is .09, so finally below .1 and he stopped taking Leucovorin. His hemoglobin came up over 8, as suspected by his retric number. He is indeed making his own red blood cells. However, his ANC tanked. He's way below the 750 needed to start the next round. He dropped from 720 to 400. We go in Monday to do another round of blood work, if it's better they'll admit him. 

A lovely, QUIET, uneventful weekend of no beeping. Connor continued to drink a minimum of 80 ozs a day and Leucovorin every 6 hours.  His MTX is 0.12 still. No change once again.  Until he has no trace of mtx we can't start the next round. We are hoping for Monday now. (Not that I really want to do this again, but we have three more rounds and I kinda want it over with!) We'll go back to the clinic on Thursday for new numbers, likely a COVID test, and a slight chance of blood. On a positive note, his creatinine is still 1, his platelets went back up, his ANC is close (720), and while is hemoglobin is holding at 7.4, they confirmed with a retic (reticulocyte) count that he is in fact able to make red his own red blood cells, so they are still holding off on the transfusion. He is showing no other signs, so no danger of waiting at this point. So hopefully the rest of the week will stay quiet, and Connor can get caught up on school work for the end of the marking period.

Made it through another night of hydration. Kirk took Connor to the clinic this morning, with his hydration attached and they agreed to let him off because they couldn't stand the beeping either. His MTX is still .12, so going back Monday to check again. We anticipate being admitted for next round on Friday. Connor is still drinking lots of water to try and get the number down, and they are keeping him on the Leucovorin every 6 hours. Enjoy this video of Connor's hydration pack!

MTX is 0.12. Has to be below .01, so another night of fluids. His creatinine is holding steady at 100, and hemoglobin came up a bit, so continuing to put off transfusion. Platelets have dropped again, and ANC has dipped a bit too. Back at the clinic tomorrow morning for blood work again. This is Kirk and Connor getting hooked up to fluids. He has two fluids, and two pumps working simultaneously, and needs changing every 8 hours. They did switch the Leucovorin to every six hours, so that's a bit easier. Hopefully this is the last night.

Connor and I watched the swearing in of Biden and Harris today. Hopeful for the future, and thrilled for the glass ceiling shattering today with our new VP! Connor's MTX was .15 this morning, so they decided he could be discharged!! Yay!! He's finally home and made it home for dinner tonight! He does have to continue to stay hydrated, so bags of hydration are arriving this evening, and he'll be hooked back up. He has to take oral Leucovorin every 3 hours, and change the hydration bag every 6. We are back at the clinic at 8:30 am for blood draw to check the levels. His Hemoglobin is still low, but as long as his only symptom is being tired, they'll put off giving him a transfusion. His ANC has bounced back up, but his platelets are a bit low, so they still won't start the next round on Monday, and unlikely he'll start on Wed. Hopefully we'll have a full week off, with the possible exception of blood work and another COVID test on Friday before admission. Can...

MTX is .19, creatinine is down to 1, all headed in the right direction. Staying another night still, he'll get blood tomorrow.

A full week. MTX is still .27, his creatinine has come down again to 110, so the kidneys seem do be doing okay, just slow. Because he's still here another day or two they've put off giving him blood today. They'll try tomorrow. Just gives his body a break.  He let me beat him several times at crib and we're pretty even at UNO. Still sick of these 4 walls though!  As it has been a week, they have to de-access the port today, so he got 30 minutes without tubes.  He got a shower and we walked around the outside of the hospital, without pushing a pole.  Sunny today and above freezing, so nice to get out.  He's tired now though. Unfortunately the nurses struggled to get his port re-accessed.  And 30 minutes isn't enough time to get the numbing cream to work - he's being incredibly patient and gritting his teeth while he's in pain.  He's so incredibly brave.  I'm typing and trying not to tell them to get away and stop hurting my boy!! Our frustration l...

MTX has dropped to .27, but not there yet. I came up to the hospital for breakfast, and Connor and I played several card games. He's acquired some mouth sores so he was fairly uncomfortable, some Tylenol and destraction helped. His Hemoglobin dropped to 7.6, so they wanted to give him two units of blood while he was here, but had to time it carefully around the three hour Leucovorin. I came home to walk and make dinner, Kirk came up to spend the day with Connor after soccer. (Kaylea is at a friend's today, the only one she sees anymore!) They got the blood started and Connor immediately felt itchy and got (thankfully!) a single hive.  They obviously stopped the transfusion and gave him a hefty dose of benedryl.  He's resting now. They may try again tomorrow, but start with the benedryl before the blood! Never a dull moment, that's for sure!

Connor is feeling more himself. His MTX has come down to .46, still needs to less than .1 Hopefully he can go home Monday. His creatinine is holding steady, and his other numbers look good. ANC is pretty good and Hemoglobin is down to 8. They'll run it again tomorrow as it's possible he'll need blood again soon. He's finally starting to want food again. Throwing up really through him for a loop. It's been a long time since he was sick, and he really didn't like that feeling.  Hopefully he won't have too much!

MTX finally dropped below 1, needs to be less than .1 to go home now. Likely still here for the weekend. Connor not nauseous anymore, but has no appetite. He had some broth yesterday, today some dry Cheerios. Connor said he'd watch a movie if I promised not to sing (or say the lyrics ahead of the actors!) Nothing like Top Gun!!!

Connor was still feeling pretty nauseous this morning so they added Ativan to his zofran, and he went right back to sleep. They doubled the amount of Leucovorin today to help excrete the MTX. Number is down to 2.3, but needs to below 0.1 before he can go home. The doctor is doubting he'll be discharged before Monday at this point.  He did mention that just because he reacted this way this time, doesn't mean he'll react this way next time. Hopefully it gets easier because otherwise the next 3 treatments are going to take forever!! He finally ate some broth for lunch today and still feels okay. First meal since breakfast yesterday. He's resting a lot and keeping up the fluids.

Connor had an uneventful day yesterday. Kirk stayed up with him on Monday night until about 12:30 watching movies. Kirk came back again in the morning and spent the day while I got some work done. The MTX dripped over 24 hours without incident until about 7:15 pm. They did blood work right away. His MTX needed to be less than 120 at 24 hours, and it was 66!  Unfortunately, it is taking a hit on his kidneys. His creatinine level was low to normal when he was admitted (68) it jumped to 100 overnight, and was 130 this morning. Going in the wrong direction.  Of course the major thing now is to expel all the MTX and if his kidneys aren't functioning properly it makes that harder.  They did an additional MTX level at 36 hours to see if they should be changing anything. The MTX is down to 30, so still elevated, but on track, so we are still in the watch and wait phase. At 42 hours they start Leucovorin to aid in the excretion.  They considered starting early but decided we ...

Connor's ANC is back up to 820 (needed to be over 750) so we've officially started the 3rd phase of treatment. He had a spinal tap injection this morning, and they have been dripping liquids into him all day. We've walked across the hallway and been admitted. Here is his home for the next few days.  Once his urine pH returns to normal they'll start the high dose Methotrexate. It drips over 24 hours, and them they test his blood at 24 hours (once it's done), 42 hours and 48 hours. If the goals are met at each stage then he can go home after 72 hours. If the goals aren't met his stay may lengthen.  He also starts Leucovorin at hour 42.  This is the "Bible" for the next few days.  Kirk is coming in this evening to spend a few hours and watch some shows with Connor.  He's feeling good and in good spirits right now. 

No go on the next phase, his ANC is only 380, needs to be 750 or higher. We'll try again on Monday.

Met with Connor's oncologist today. Next phase is Interim Maintenance I. They are putting off starting until Wednesday in deference of Connor's birthday tomorrow.  The main part of the next phase is high dose of Methotrexate through IV over 24 hours. So he'll need to be admitted for that. They anticipate 3 nights in the hospital, but release is all dependant on his numbers. This next phase is 9 weeks with same admittance every two weeks.  (Day 1, 15, 29 and 43). Thankfully in between the admissions there aren't any scheduled clinic visits. He'll need to come in a few times for blood work, and of course he needs a COVID test before every admission. But other than that he should be home most other days. That said, the blood work they did today actually doesn't have Connor's ANC count high enough to start the next phase. They anticipate it to come up, so we're going in Wed with the anticipation that everything will go as planned - but it's possible they...