Still kicking

James update, as always sorry for the delay! All seems good with the new clinical trial. No extreme side effects. Treatment 4 was today. Biopsy scheduled for next week and CT before treatment 5. We should know more after biopsy and imaging.

Head is still attached to body thanks to successful spinal fusion. James likes to call the pre-surgery his "bobble-head" days. We came very close to full paralysis so shouldn't joke... too much...

We were at Dana Farber for the day today, long day due to my screwing up start time = hour early arrival then everything else ran late. I'm exhausted but James is energized and wanted to do a front brake job on my old beast of a car so here I sit watching him work. Pretty crazy given his current prognosis. The immunotherapy clinical trial must be doing good things. Crossing everything.

Teeth... they're all falling out or breaking off or both so we've started the process of removing them root to stem. First block of 4 upper taken last week and it wasn't fun. Lotsa antibiotics, cold packs then heat packs, bleeding, swelling. We see the oral surgeon next week for follow up and to plan the next attack.

Luckily he doesn't need to chew because food needs to be pureed texture for ease of swallow. Anything with pieces catches, blocks, and sends all else up into the sinuses. We'd like to avoid that thank you very much. Current diet is the calorie rich soupy oatmeal (pulverized in the food processor to powder) cooked with butter, cream, GNC vanilla weight gain protein powder which sweetens just enough. Midday frappe with coffee, high protein chocolate Ensure (thanks to the VA who send cases),  coffee ice cream and the GNC protein powder, mmm... pretty delish. His favorite dinner is a rich dense butternut squash bisque his sweet sister makes (thank you!) which I take and make into a crustless pie by whisking in a bunch of eggs and baking in a buttered pie plate. He loves a warm slice with a big spoonful of Stoneyfield whole milk vanilla yogurt on the side. He'll also eat as soup but the pie is his favorite. Surprisingly that smooth custardy crustless texture is ok. Favorite snacks are cherry italian ice, strawberry ice cream, choc/vanilla ice cream, butterscotch pudding, apple juice, coffee with cream/sugar. Weight is up to 148 naked although dropped a couple lbs with tooth drama so may flux a bit as we continue on.

Pills are also impossible to swallow so all are crushed and mixed into yogurt. I can only imagine the deliciousness. Does the trick though. Thank you Stoneyfield.

He's working again as he likes on days he feels well which seems often. Driving a bit although I'm still behind the wheel when we're together which is most often. Our schedule is dysfunctional. Sleep is eclectic. But we're here hanging in. Kids are a huge support as is family. Thank you all :^) love to all. He's done with brakes and I'm ready for a little sleep. Somedays full exhaustion hits me and this is one of those days (he's still going strong). xxoo Beth and James too!