Our journey through leukemia

Connor's count continue to trend up. They've stopped the neupegen that helps him make WBC'S because he seems to be managing it on his own. He had two more nosebleeds last night, so they transfused another unit of platelets early this morning. Connor said he didn't sleep well because of the nosebleeds. He's tired, and still grumpy.  PT came and got him walking again. He went down the hall, sat and rested, and then back. Then he sat in a chair for a while. Hry still won't eat. And won't drink much more than water or an apple juice. He says the pain is better, but he's still pressing the Dilaudid button pretty often, and not talking or eating. So he stays on the TPN and other IV supplements. They are starting treatment again Monday. He's already a week late. But they are going to skip methotrexate, and wait another 10 days for that one. He'll just get the Vincristine. Hopefully he'll eat something tomorrow so the chemo doesn't make him too n...

So sorry for the late update. Lisa arrived safe and sound, and we are having a great time catching up! We got her a special pass to the hospital today (usually parents only) to see Connor and see where we spend so much of our lives right now. Connor wasn't the easiest to visit. He's frustrated. His mouth still hurts even though it's better. His lips are so chapped and swollen they constantly bleed and peel. Obviously that's uncomfortable. He didn't really want to talk to anyone.  He still hasn't eaten, so they continue to give him the TPN. We are trying to entice him, but he's lost interest in eating again. He's lost interest in pretty much everything, he would really like to be left alone. So he's actually acting like a fairly typical teenage boy. While I hate it, it's actually a pretty good sign!! His blood work is finally starting to look good! His WBC's are in the normal range and his ANC is just below normal. It was a huge jump both last...

Connor's numbers are up again! The WBC only slightly, but ANC is up to 780!! Very encouraging. Cardiology came yesterday afternoon and hung a monitor to see if they can figure out the tachycardia. Waiting on results.   I've asked them to consult nephrology about the high blood pressures. Endocrinology adjusted the amount of insulin he receiving (up) both long active and correcting. I've asked why his sugars are so high with the TPN, but they say they've taken out all they can. Endocrinology has, in the past, said that he doesn't have the tendency to become diabetic, but wondering if that has changed. (Hope not). He went down to Radiology again, and a dye study of the external drain prompted them to remove it. (Yay!) Hopefully the rest of the cyst will continue to drain internally and be done. We do need the cyst fully gone as it is still growing an enterococcus bacteria. He remains on an antibiotic and anti-fungal. He went directly from IR to CT and they looked agai...

Connor drank two teas last night, and seemed to keep them down. He did have another couple big d-sats (just a reminder, this is desaturated, meaning the amount of oxygen in his blood is low). It shouldn't go below 88%, and he's dropped as low as 80 a couple times. They put him on high-flow oxygen again, and then when he gets too pissed off they let him go back to the cannula. It drops more when he's sleeping. He keeps taking it off, and he got a nosebleed again today, I think because of the irritation. (It stopped fairly quickly, so yesterday's platelets helped!) I think the doctors got the message that I was pissed off yesterday, because today I was invited to listen in on their rounds. Much more helpful to hear this, rather than 4 different doc coming in over the course of the day with virtually the same info. His numbers are finally starting to come up. His WBC doubled from yesterday morning. Still far below what it should be, but on the way up. His ANC needs to be 5...

Connor didn't sleep great last night. He's still trying to keep drinking, it's still visibly painful. He said he's less nauseous though. He does keep trying to get the mucus out, today he wasn't very successful with that. The constant fluids did seem to impare his breathing today. He d-sated several times and they upped his oxygen from 3L to 10L and put a mask back on. He did manage to go back to a cannula a couple hours later. They gave him lasix to help him get rid of the fluids. It seemed to work, at least short term. He got two units of platelets again. His WBC count is still very low, as well as his ANC. He really needs time to have these come back, nothing will heal until they do. They put in the midline IV again, and then he proceeded to blow out one of the other IV's. I guess he was tired of being a pin cushion.  His sugars are still up, they are giving him insulin every four hours to correct, and adding back the overnight Lantis as well. They did adjust...

June 14th is World Blood Donor Day. This is a reminder to please donate if you are able, and find out about platelet donation too! COVID-19 has contributed to a shortage, and we are having trouble getting Connor platelets in his blood type! He's had three transfusions in two days, and he's still in severe neutropenia. (Low white blood cells, and high risk of infection). When I got there this morning he was hungry and trying to eat. Unfortunately his swollen mouth and throat still make swallowing incredibly difficult. It is increasing his frustration greatly. He managed two bites of some cereal, a sip or two of smoothie, and some water.  It all came up along with what seemed like a metric ton of mucus and blood (about 300ml, but still...). He did sleep fairly quietly after that, and seemed to breathe better at least for an hour or so.  He blew out another IV last night so they are looking to put the midline back in, but they hadn't done it when I left. He has an IV in his le...

Connor slept a bit last night, but was up vomiting overnight and early this morning. I got here about 6am, and he was awake, and trying to talk more. He is constantly choking on the mucus, and that is causing most of the throwing up. He was wanting to engage more, but frustrated we don't understand him right away.  On the positive column, his kidneys are back to normal and his liver is starting to recover. His hemoglobin went up a bit. He asked about food this afternoon, and is trying to eat an Italian ice. It's still hard to swallow, but a positive sign that he wants to try. He spiked a fever again at about 9:30 and his blood pressure went down a bit. They are watching him closely for sepsis again.  His WBC are very low, and not coming up as they should after the transfusions. His platelets went up last night, and are already dropping again this morning. His ANC is still very low. They are going to try GCSF this morning, a medicine to help him generate WBC. His mouth sores ca...