Lovebuch family happenings

Life rarely goes as planned, and treatment is no exception. The plan was to administer some chemo to knock the leukemia back and then go on the car-t trial. However, the little amount I had put me in remission and now I’m off the car-t trial and prepping for stem cell transplant. The plan was to knock it back just a little (my bone marrow while I was in Swedish was reported at 30%--nothing to sneeze at), so Dr. Shustov ordered ¼ of the normal dose of Cytarabine, and removed another chemo from the typical induction dose, methotrexate, entirely. The “whiff” of cytarabine (Dr. Shustov’s word) apparently really connected with my leukemia cells and killed enough of them that I am in remission at the moment according to flow cytometry. Our hypothesis was that the leukemia this go around happened to be highly sensitive to cytarabine. Dr. Shustov was quite surprised that I was put into remission by such a weak dose. This is, of course, good news. However, it was not the plan, and when I first...

We're trying to use these weeks before Derek's next phase of treatment (more to come in DerekPost ™ later this week) to get out and have a little bit of family fun. Last friday we took a hike to Talapus Lake and in the Alpine Lake Wilderness area. Alpen spent the first half hour or so swiveling his head from side to side, taking in the new scenery, but for most of the rest of the hike he slept pretty well in the carrier. We enjoyed some sandwiches from PCC at the lake and then, on our way home, stopped at a new favorite place in NorthBend called SwirlYo! They sell.... yes you guessed it - frozen yogurt, yo!  Also included a photo of Alpen in a normal person chair for fun.

It’s been a busy two weeks since I’ve left Swedish, two Saturdays ago the 5 th , I checked into the UW hospital to get a Hickman central line catheter installed in my chest in preparation for chemotherapy. I had a Hickman installed back in the 2012. A Hickman means no swimming, and showering is annoying because it needs to be covered w/ plastic wrap.  But it also means I can get chemo through it and no more arm sticks for blood draws. I had two rounds of Cytarabine in the hospital. Dr. Shustov wanted to knock back the systemic leukemia, but not eliminate it, because the CAR-T cells will need something to attack, latch, and multiply. Dr. Shustov said he ordered a ¼ of the amount of cytarabine that he would give for standard ALL-treatment. It was nice because I didn’t feel too sick or nauseated after receiving the drug, but it was still strong enough to knock my counts back for two weeks. Following the Cytarabine, I went home for three days, and then back to the clinic for an Ommaya...

I found out some bad news last week: I’m no longer in remission. Ever since Alpen came home, I had been having some head-aches and sinus pressures, and then more recently I started seeing binocular double vision. Following a visit to the ophthalmologist, where he said the double vision was caused by an increase in brain pressure, I checked into the ER for an emergency MRI, where they found a mastoid behind my right ear along with some pictures that were likely showing a malfunctioning of my Ommaya port (a piece of hardware in my head that we used in the last round of treatment for better access to the Central Nervous System). But which of these was the cause of the increase of pressure? The mastoid wasn’t big enough and not in the right location. Something else was up and through comparison of the MRI and CT images I had before the installation of the port two years ago, Dr. Gala, the neurosurgeon, thought a cyst had formed between my ventricles and the port and was causing improper f...

My doctor and I decided to cancel any more systemic treatment because of the increasing occurrence of complications. My doctor felt that at this point, the cons outweighed the pros--meaning the organ damage and possibility of more serious complications caused by the chemo would be greater than the increase in the chance of cure.  I sided with his judgement. I have mixed emotions because I want the greatest chance of cure possible which means sticking to the plan as closely as possible and taking more chemo. However, this must be balanced against the side-effects, and there is a limit to how much chemo any body can handle.  My pancreas, stomach, and intestines were being pushed hard. These are organs I don't want too max to their limits. (Especially the pancreas which Dr. Shustov described as a nuclear reactor of enzymes--so I really want to avoid messing with that one anymore). It really makes the most sense to stop now, before any worse complications occur. We discussed sto...

Since leaving the hospital 3 weeks ago, I haven't had any more chemo, as I'm still recovering from the side-effects of the cytarabine almost a month ago.  The cytarabine isn't selective in what cells it kills and it really inflamed my GI tract. Five days after getting out of the hospital, I went back in the middle of night because of an esophageal bleeding.  It scared the bejesus out of me as I had low platelets (also from the cytarabine), so once the bleeding started, it took a while to stop, my stomach filled with blood, and then that caused a load of nausea until I vommed up a bunch of fresh blood. Bree drove me to the ER and we stayed in the ER for 15 hours until a room opened up on in Heme/Onc. Twenty-three people visited us during the ER stint--6 doctors, 7 nurses, one PA, 4 radiology, PT, OT, and 3 hospital staff to sign forms. I was glad for the attention, but it did make it difficult to sleep. After some tests and a scope into the stomach, I was free to go on Satur...

hello all, Briana reporting in for blogging duty. It has been a long 9 days in our world. Derek checked in to the UW hospital last thursday for regularly scheduled dose of cyterabine (the "marrow-crusher") that Derek has previously described. All went as planned in that stay and Derek was released on Saturday. Battling some nausea, we managed to make it out to the wedding of Jeff and Kaitlan, two very good family friends of the Buchner Huhman family. However starting in the middle of Saturday night, D started having extreme stomach pain. Eventually it became clear that we would need to go the hospital as meds on hand weren't helping. So we checked in to the ER, and long story short have been here ever since (well, I have come and gone quite a bit, but Derek has not). It seems like one thing always leads to another with this type of treatment - the chemo drugs cause a whole host of side effects, which all have their own potential rippling effects. So my understanding is...