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!

Footnote

Clinical trial infusion nurse told me end of day yesterday that they would not boot from trial if rash appears, they just try to catch and control early. Don't know where the irrational fear of mine stems that we would be removed from trial but great to know it's not the case! Phew.

No nausea today. Yay!

Always something...

September 2019 Flat Rocks Bartlett NH

Hard to believe this photo was taken a week or so ago which was less than a month out from the successful cervical spine surgery and start of Dana Farber clinical trial. I feel as though James is a cat with (hopefully way more than) 9 lives. This is the 3rd or maybe 4th instance of us (or maybe just me) thinking we're running out of options and then suddenly we're back in the game.

He's healed well from surgery. It's been almost 5 weeks, we go tomorrow to get the stitches out if they can find them. I feel like it's all healed over, crazy long time for stitches.

We're sitting at Dana Farber in the infusion center now getting his second clinical trial treatment, a combination therapy of the Opdivo (same as before) with an added magical targeted thing (will need to find the actual info to add in.... brain currently not working). With the first treatment side effects were minimal. He had some nausea the morning after but it could have been a massive frappe I'd made. I won't do that again. Oatmeal it will be.

When we were in NH we noticed a rash on his shoulder and chest. If treatment related may have been the end of it but after messaging the DF doc over the weekend with graphic photos he was certain it was Shingles so called in meds. We were told the Shingles can lie innate in your system then be triggered by something or other including some cancer treatments. I have to say I was so happy that's what it is (easy for me when I'm not dealing with the itchy mess) but better than being booted from the trial. Fun fact when you go for treatment and haven't been on the Shingles med for 72+ hours (started on Monday midday and today is Wednesday midday) they consider you contagious and tuck you away in a special room with air that vents directly outside instead of shuffling you from floor to floor. It's been a pretty relaxing day and I told the med staff we may claim shingles every time.

Anyhoo, we're still here plodding along. May go fishing again if I can get my bead work done in the next couple days. Finding balance (med/life/work) is difficult but we're doing our best. Hope you are too! xxoo Beth and James

Phone home

phone home

James' sister texted asking today if he'd started cracking jokes again. That's a good sign of how he's feeling so I asked and "phone home" was his response. The oxygen sensor light is perfect, took us a minute to get it but :^) he's back.

Today was a good day.

They took him off the "special k" (ketamine iv) and said he the drain should come out tomorrow. The two stipulations of coming home are off ketamine and drain removed. Yay. Crossing fingers and everything else that tomorrow will be the day.

He finally tried the protein shake that the nurse had recommended when first hospitalized and he loved it. Bummer that he waited so long into the hospitalization to test it out but good to know it's there for tomorrow. The other foods had been hit or miss, mostly miss. I told him he should order a couple shakes for breakfast. So many flavors, so little time.

I'm home to sleep tonight, still trying to catch up with a little work without much luck. It's been hard to focus and it'll be nice to be all in one place again. We'd love to get away for a little of James' birthday week to NH but won't stress about it. We'll see how he's feeling when he's home.

The kids have been such a huge help. Phoebe was with us at the hospital today which was really nice.  We did a couple quick errands on the way home then were pulled over by a nice young cop who said I didn't have my lights on. Yikes. Phoebe said it was my frazzled apologetic face that sent us on our way with a "you're all set, have a nice night."

Sander stayed home, he's been doing SO much around the house. It's been a complete disaster the past few years and he's digging in. I've told him what I don't know is missing won't be missed. So far I haven't missed a thing, we'll see if James does when he walks back through the door.

Yes, today was a good day. Hope your day was good too!

Thank heavens for sweet nurses, talented surgeons, kind policemen, wonderful children, and delicious shakes.

xxoo for now Beth & James

Love and support

I don't often talk about our support system. This photo of James post surgery eating a delicious cup of black raspberry ice cream that my sister Susan delivered feels like a fitting place to start.... thank you to ALL our family, on both sides, for having our backs and taking care of us when we're down. Phoebe and Aleksander (our two wonderful kids) we are so thankful you're with us keeping us sane and strong with love and laughter. To my beautiful mother and sisters who all help out at the drop of a pin whether or not I think we need the help. To all of James' wonderful siblings and family (he's one of eight or 11 or 40+ when we count the half-sibs, in-laws, out-laws, nieces, nephews, grands, etc) each Mellor is gifted with his angel of a Mom's giving/caring nature. All of our loving family, extended family, friends and neighbors pick us up mentally, financially, physically. Your kindness and generosity and support is hugely appreciated, we could not carry on without you. We love and appreciate you all so very much.

A quick medical update.... surgery went well thank goodness. James will be inpatient for a couple days then home healing or in NH fishing, we'll see how it goes and will try to keep you all updated. No news yet on whether he's made it into that clinical trial, too soon to know. Good news is that whether or not we do have options. One foot in front of the other hopefully with a smile on the face and ice cream in hand. Thanks! xxxoo Beth, James, Phoebe and Sander

Dana Farber

browsing hospital menu for puddings

Dana Farber has a phase 2 clinical trial in mind but needed to stabilize his cervical vertebrae which were quite damaged by cancer. Things move quickly here. First oncology consult about clinical trial was Wednesday, imaging same day showed damage to C1-2-3 resulting in surgical consult Thursday and admittance to hospital. He’s in surgery today (Friday) at Brigham and Women's in Boston and I’m waiting patiently. 

If all goes well with the surgery, the clinical trial sounds promising. It's a combination therapy, immunotherapy with something more targeted. We're waiting to see if he's accepted but in the meantime needed to stabilize the spine and then heal from the surgery. Infusions would start in a couple weeks.

Positive energy sent his/our way will be hugely appreciated.

Wheels are turning

The VA just called, they're contacting Dana Farber to approve the referral. Dana Farber just called, they have the referral from the oncologist and will discuss the case and call to set up an appointment. Wheels are turning. Update... Dana Farber appt is August 14. We just had another immunotherapy treatment. James is honestly doing quite well!