Lovebuch family happenings

Monday morning and still in the hospital but my time to leave Is scheduled for 1 pm today. Writing from my phone so a bit tricky, but will do my best. In sum: huge thank you to  anyone who has donated red blood cells or platelets!!! If you to do something good for cancer patients: donate! I went through a few bags this weekend and wouldn't be writing this without them. Still no signs of any car T action, and thankfully no more signs of any stomach bleeding. The cause of the stomach bleed is thought to be from the chemotherapy and low platelets combo. The chemo I took destroys any dividing cells. Well the cells of the stomach, esophagus and mouth turn over more than other cells in your body so the chemo kills/irritates these cells.  typically these are places where you have issues after chemotherapy (mouth sores, nausea, etc). The combination of wounded stomach cells and low platelets meant some routine oozing turned into a fairly large bleeding event and that is why I came in to th

Hi all, Derek received the modified T-cells on Tuesday. Pretty short infusion at the SCCA, and then two hours of being "watched" afterwards. Many labs were drawn. Afterwards Derek was feeling well enough to go for a little stroll at Kubota Gardens. I'd never been there, but it was really beautiful. Alpen hated it however as can be seen from the pictures! After the cells on Tuesday, Derek had normal clinic visits Weds. Then around 1 AM at night I heard him say "Briana" from the hallway. I thought, hmm, that must have been in my dream that he was talking to me. But then I heard it again, and I realized he was talking to me. He needed to go to the hospital. Our first response was to drive on down, as we've done before. However Alpen and I both had colds. I couldn't really fathom waking Alpen up in the middle of the night and dragging him into the ER. When he was smaller, he could do that kind of thing, but now he's his own litt

As of one hour ago, all the chemo I will need to prep for the CAR cells is done. Now I’m waiting out a bag of red blood cells.  The train is moving along, but I wish it could move faster because with all this waiting from July, the leukemia inside of me has been multiplying. We tried our best to “keep a lid on it.” But now it rather high like 80% of my marrow, this means it’s squeezing out space for my body to make my other blood cells. So my counts have been dropping every day due to my increasing cancer load--making me feel more tired and be more susceptible to infection--and it would be nice to stop waiting and take something that will get to the root of the problem of too much ALL in my marrow. This past chemo does a little bit against the cancerous b-cells, but it also does a little bit to all my cell lines. So it’s a slight benefit the chemo, but I’m ready for the ALL-specific special forces to get in there. I actually had a little bit of good news today when I found out my plate

It’s becoming more real this week. The final tests have been done last week. Chemo starts on Thursday, and continues for three days. Sunday and Monday are rest days, but the Tuesday next week (sept 18th) is the big day when the engineered cells go in. I’m having a data review with the team to square things away before we put any medicine inside me in an hour or so. It’s hard to describe my headspace at the moment. I’m thrilled to have a chance to clear some leukemia that doesn’t involve more serious chemo, but I’m also a little nervous and little scared. Even though the transplant was statistically more risky than this, it was also more honed and more practiced. CAR-t therapy, still being in trials, makes me feel more vulnerable and in that way is more scary. I really can’t grasp how I’ll feel once the CAR cells start killing leukemia. Like, a cold bad, or a flu bad? And it seems, I “wait” around for the 14 days after treatment--well still coming in for check-ups every day but mos