Our journey through leukemia

So my day started with a text from Connor at 7:30am that someone from surgery had stopped by (a med student apparently), and that the pseudocyst needs to be drained and they would call IR and put him on the schedule today, and then left. Connor was very confused, and a little distressed, because we don't want the drain to go in again if it's just going to keep filling. In any case, we waited for the rest of the team to weigh in, I also requested they speak to surgery about their bedside manner with a minor. The issue seems to be that the pancreas is still hurt. Essentially bruised, and time is the best healer. Unfortunately that doesn't work for us because the side effects are so debilitating to Connor right now. They believe that the pancreas is still leaking and that's why it refilled. So GI has agreed to do another endoscopic procedure to look at the pancreas, hopefully find the leak and try to block it, encouraging it to seal.  But because things are never easy, the

Sorry I missed an update yesterday. Let me recap. Connor made it through the night Fri to Sat without getting sick, but upon moving to a chair he threw up right away Sat morning. Thankfully a Dr was in the room and could see his distress and violence of it and suggested a repeat CT. It got done late in the day, and didn't get to talk to the Drs until this morning. The &_$#-@# pseudocyst is bigger!! Apparently it's the lower one that the external drain was attached to, and it's almost doubled in size. Infectious Disease dr speculation is that it could be like a honeycomb with several pockets. Regardless the first thing out of her mouth was, the external drain may have to go back in. I just about jumped down her throat. If we have to, but it my opinion it's now a last resort. We have been dealing with this for three months, we are not waiting another month for a slow release with continued nausea, and what happens after that, how do we know it won't happen again?

Tonight is Connor's 18th night in the hospital this stay. He can't wait to be home. We are aiming for Monday now. They are going to work on reducing his TPN (IV nutrition) to only a 12 hr infusion. And lining up delivery of those meds, and more micafungin. Connor is scared that he'll be too much of a burden, and we're scared that he'll need more help than we can give him. But we want him home more than we are worried, and just being home has some healing properties! I spoke with the oncologist and the endocrinologist and we feel like we have a good plan. The GI Dr did apparently suggest we add Cyproheptadine to his many medications. It's often used as an appetite stimulant, but they want to try it to see if it helps keep things moving in his digestive tract. We'll see how it works. They forgot to order his Kytril last night, so he woke up puking early this morning, and was sleeping from the Ativan when I got there. When he woke he had some reflexology, tried

First of all Connor is no longer in pain, mouth is cleared up, weaning off the meds (slowly to avoid withdrawal). But Connor has lost all patience. He's still sweet and kind and trying so hard, but he's back to having two modes.... Sleeping or puking. GI was brought in today to discuss nausea and suggested abdominal breathing and getting up and moving. I don't disagree that more meds are not necessarily the answer, they so far seem to put him to sleep, but if he stands, he pukes. (Not even entirely sure the nausea and vomiting are connected, the vomiting happens very suddenly and very violently.) Hard to walk around if you are puking. He is positive for C diff, another infection, so another antibiotic that once again has nausea as a side effect. Honestly don't know what makes him sick. Meds? Pseudocyst? Chemo? All of the above? Doctors don't know either. I begged the staff to do more, that this isn't any quality of life.... Hopefully they find something.

We're still here.  In the last couple of days, he's stayed completely off oxygen, blood pressure is a bit better, and mouth sores are improving. He's definitely talking better. His fun new party trick (actually not new, but back again) is the nausea when he moves. For the past two days if he stands or moves he pukes. Physical therapy just loves working with him! (Please note the sarcasm font here!)  We are bringing GI back in to assess the fluid collection, we're tapering off his Dilaudid, and going to test for C diff, an infection often caused by being on antibiotics for extended periods. (Ironically treated with more antibiotics!) Any of all of these could affect him. We were hoping to be closer to leaving, but if he can't move without being sick, it's not exactly ideal. His WBC count still fluctuates daily. His ANC is great, over 2k. His platelets have dropped again, so they are doing another transfusion today. He's sleeping a lot. Which at least means he

Had all of us together as a family today!!!  Nothing much else has changed. Connor is slowly getting better, but needs time  Kaylea, Lisa and I are heading into NYC tomorrow for the Immersive Van Gogh exhibit, and spending the night in the city, do will do lots of walking and some touristy things! I won't see Connor until Tuesday evening, so may not update until Wednesday. If you don't hear from us, he's getting better day by day!!