Author Archives: ariannaadele

Hello friends and family, No news over the past year has been good news, but we have some updates to share now. Jeff had brain surgery this past Monday. He has been coming back to NYC every 6 weeks for scans, and until a couple of weeks ago all the feedback we got was thatContinue reading “An update on surgery”

Hello from outside the hospital! Jeff got a standing ovation from the nurses and attending doctors on his way out of yesterday, which was very moving. We got lucky with a sunny and 50-degree day that allowed us to enjoy an afternoon coffee/tea at a park and sit outside to eat lunch facing the EastContinue reading “A change in scenery”

Tomorrow is discharge day! Jeff finally gets to leave the hospital and breathe fresh air again. He’s very excited to have some freedom, but he will be limited in what he can safely do while his body and immune system continue to recover from the last three-week onslaught. The best news today is that theContinue reading “Almost free”

Jeff is feeling relatively good today, except that he still has bothersome hearing and vision loss, and a headache that comes and goes. Because they don’t really know what is causing them it’s hard to treat or give an estimate of when they will get better. His blood work is all continuing to improve, andContinue reading “Cabin fever”

Just here to share a few positive things. First, Jeff did over a mile in laps today. Major improvement! Second, he actually felt hungry for the first time in two weeks. Third, a couple of markers in his lab work are looking up: white blood cells are detectable again, platelets hit 31, and liver markersContinue reading

Jeff has had a couple more rough nights. Despite skipping the last IL-2 dose on Monday night, Jeff’s blood pressure dropped, he had a persistent high fever, and his heart rate was too high when they checked his vital signs routinely at 9pm that night. This set off an automatic septic shock alert. He spentContinue reading “Two steps forward, one step back”

Jeff is done with his last treatment dose. He has powered through the last three days like an absolute champion, despite feeling like garbage. It will take a few days before he feels better, and even longer before they let him leave the hospital, but every day past the chemo and IL-2 he should improveContinue reading “On the upswing”

Jeff is now 3 doses, or halfway, through the dreaded Interleukin 2 (IL-2). It has made him feel terrible. We expected this, but it is still difficult to go through. According to the doctors and nurses he is actually doing better than most patients do on this drug, so despite the chills and fever heContinue reading “Under siege”

Dear friends and family, Today was mostly unremarkable, which is not normally newsworthy but given the last update a boring day is a very good thing. Jeff is improving and his speech is much better. We met the new principal investigator, which is the doctor who is running the trial (it has changed; the previousContinue reading “A wonderfully boring day”

Dear friends and family, We arrived in New York on Wednesday afternoon and had a night to settle in and get Jeff’s COVID test, and then came back Thursday for a surgical procedure to place his Hickman catheter. He was checked into the hospital starting Thursday night. We learned both on Thursday waiting for theContinue reading “Complications on Day 2”