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.