Home!

Brain cancer is...

...having everyone back under the same roof.  Hurrah!

Alex, Tiana, and Beowulf made it to So Cal after a long day of traveling.  They are settling in today.  Tiana will do errands for a few days, and Alex starts tomorrow at UCLA.


They say a picture is worth a thousand words.  Here's an image that pretty much sums up how the pups are doing together at this early point in their relationship:

The more Beowulf says, "I don't know you, and I don't like you," the louder and more obnoxiously Mousse says, "Play with me!"  Let's watch, shall we?


We left the party and are settled in at UCLA for Darrell's 10:30 appointment tomorrow.  Still no radiologist's report from St. Jude.  Dr. Cloughesy will read the scans for himself.  We know you'll be sending your positive thoughts Darrell's way.


All our good thoughts are heading to you and yours!

Anticipating!

Brain cancer is...

still anticipating!

What we didn't tell you yet is that Alex and Tiana don't arrive until tonight.  That gave us a full day to run amok.

We started by sharing our breakfast burritos with family members Gordon and Gary. Here are many Guillaume men, looking right:

And here's Mousse, who joined us, but stuck with fruit and a delicious bowl of water:

Later Denise came by to restock Darrell's burrito stores.

She brought more than this.  I'm afraid to ask where Darrell hid the rest. 
Finally, we all checked out the new bed, making sure it's sleep worthy:

And with that, we leave for the airport. 
We hope your escapes are similarly satisfying!

Gathering the Flock

Brain cancer is...

...gathering the flock.

Thanks for your wishes and prugs today.  The MRI went fine, and we have discs in hand for UCLA's Dr. Cloughesy next week. 

Here's Darrell hightailing it out of St. Jude's as fast as his doughnut-fueled system would take him:

No radiologist's report yet, so we are spared the decision of whether or not to read it in advance.

Back at home, we began to gather the flock.  Here's the pic Tiana sent.  It's our grand dog Beowulf, ensuring that he won't be left behind on tomorrow's cross-country flight:

Alex and Tiana are currently pulling an all-nighter to move out of their Emmaus, Pennsylvania apartment and get on the plane in the morning. 

Simultaneously, Zachary and Summer came back down the mountain with Mousse:

Guillaume house ready for re-unification?  Ready!

Not Going Hungry

Brain cancer is...

...not going hungry.

Darrell's MRI was scheduled for today, but they called us yesterday to reschedule for tomorrow (Friday) because the equipment that does the perfusion scan was down.  Tomorrow's MRI is set for 1:30 p.m. check in and 2:00 scan.  Send your calming, tiny-tumor thoughts this way at that time if you feel so inclined.

It takes a lot of emotional energy to gear up for the MRIs and their aftermath, so today we put all that energy into errands and...eating.

We turned our planned post-MRI breakfast burrito celebration into a pre-MRI breakfast burrito celebration:

At lunch, we celebrated the gift of reserved parking at our In-N-Out...

...which is very important because our little In-N-Out parking lot is always full, with people waiting:

Then Ruth brought over the Guillaumes' favorite Edwards meal:  Lasagna, salad, strawberries and homegrown tomatoes. 

By the time I got back into the kitchen after walking Ruth out, the lasagna was one bite short of a full tray.  Wonder who could have done that...

More Re-Nesting

Brain cancer is...

...getting improved "re-nesting" results.

Working:

New office off the kitchen.  Dual command posts.

Brilliant!  We should have thought of this years ago!

Also working:

Stubborn day bed offers additional seating space in family room.

Soon to be working:

New bed gets delivered soon. 

But what's really working is...dinners!

Amy Cox-Petersen and family:  Sushi extravaganza was definitely the high point of two days!  Many thanks! 

And thanks to all Team D members for your continued care with texts, calls, emails, treats, good thoughts, prayers, all of it.  We feel the love.  Hope you feel it right back!

The Professors

Brain cancer is...

battled by...

...the Professors!

Meet:

• Professor Moriarty
• Professor Xavier 
• Professor Plum 
• The Professor from Gilligan's Island

Aren't they sleek and wonderful?  You can see that the Professor from Gilligan's Island is in the new unit (also sleek and wonderful).

Christmas is our big holiday, and it looked like Christmas this morning:

All the old equipment got boxed up and shipped out.  This is the Age of the Professors.

 

Above is Darrell inserting a new battery into the new charging unit.

The Professor from Gilligan's Island was Darrell's first new battery, and it lasted 5 hours.  Reports are mixed on whether they last any longer than the old batteries (our Jameses and Doctors), which was 2 to 3 hours.  So far so good though.  And charging time is down from 6 hours to 3 hours.


Supposedly these new batteries alarm lots less too.  Here's what it looks like when the battery needs to be changed:

Same trusty 'ole backpack (or the low-profile shoulder strap bag) for now.

It's also very quiet.  Darrell says, "A little TOO quiet..."

Thanks for caring!

New Sherriffs

Brain cancer is...

 ...ready for the new sheriffs in town.

The new Optune system and batteries arrived today.  Device Support Specialist Amy comes tomorrow to show 'em (and us) the ropes.

We're leaving the boxes mysteriously sealed, surrounded by their magical aura, until Amy's arrival.

Re-Nesting

Brain cancer is...

...re-nesting.

We're now actively re-arranging the nest to make it comfortable for six adults and 1.5 pups.
So far we know what doesn't work.

This doesn't work:

 And neither does this:

Hmm. 

We'll try again tomorrow.  We went for a walk instead.

Happy Sunday Night!

Empty Nesting

Brain cancer is...

 

...emptying nesting on a Saturday night.

Darrell made this lovely roast feast for two tonight.  Zachary and Summer are at the cabin, breathing mountain air and (bless their weed-whacking hearts!) handling the annual abatement to reduce fire risk.  Alex and Tiana arrive in exactly 7 days.  Thus, our next Saturday night proves to be more boisterous.  Lots of joy in store!

It was cool enough tonight that we could walk at the park without alarms.

It was beautiful.  Happy Saturday!

"Alarming"

Brain cancer is...

 

...alarming.

Darrell's Optune has a very sensitive alarm system built in.  If there's a loss in connection, it alarms.  It also alarms if the temperature differential between his head and the ambient air gets too small.  (That's Engineer Darrell speak for, "It starts beeping if the air is too hot.")  It beeps and the red light goes on, as you see above. This is important because treatment is not delivered when the unit is alarming.

I'm no engineer, but I'm pretty sure that 100 degrees is too hot.

Blech.  We definitely learned the limits of Darrell's Optune system today.  We give up.  After an enjoyable breakfast with Gordon and a tasty lunch with LuAnn, we are holed up in the family room with the air conditioner running. 

We hope you are staying cool too.

Just wait.

Brain cancer is...

...so much waiting.

Darrell's appointment with Dr. Park was at 10:15 a.m.  Being a punctual man, Darrell arrived at ten.  The doctor saw us at...

...that's right.  11:40.  That would be an hour and 40 minutes of waiting.  Waiting room pain level was...

...at 10.  An hour in, Andi was ready to punch someone. Fortunately, Darrell is not only a punctual man, he's also a man who needs to keep busy. Looking for things to do, he stuck his finger into a hole in his Optune backpack, like this:

 
As soon as we both heard, "Ow! Ow! Ow!" we realized his backpack doubles as a Chinese Finger Trap.  We spent the rest of the waiting time laughing.  (Don't judge.)

From there the appointment went fine.  Here's the update:

• Reconfirmation that the last MRI showed no growth.
• Continuation of the schedule for monthly MRI, blood work, chemo, and UCLA appointment.
• Regarding denied genetics testing bill, Dr. Park said, "Just don't pay 'em."  (What? People do that?) After a predicted Rock 'Em Sock 'Em Robot battle, we'll pay Caris (the genetics testing company) a maximum out-of-pocket cost of $550.

Signing off.  Remember what your scoutmaster told you:  "Don't put your hands where your eyes can't see."









 

Denied!

Brain cancer is...

...more insurance hijinks.

We know that treating cancer is very expensive, so no doubt companies need to figure out where to draw the "covered" line. However, when they land on the  "deny" side of the line, it seems pretty arbitrary.

The photo, above, is our company's recent denial of the genetics testing, on the grounds that it doesn't "lead to better treatment and health."  Except that, as Darrell points out, he would have joined a trial if the results had been different. Ugh. 

We'll start the appeal process tomorrow.  We see Dr. Park (the local oncologist) for a regular follow up and blood work, and we'll ask for his assistance.

Look at our new, mad cancer skills though:  Not a single tear spent on an insurance rep! We are mighty!

We hope your day was tear-free as well.

Optune 2.0

Brain cancer is...

...facing a sleeker, lighter opponent.

Big news! The FDA approval of the new version of Optune came through.  The new system is "less than half the weight and size" of Darrell's current system.

You recall meeting the Jameses and the Doctors:

Each of Darrell's seven batteries is nearly 9 inches square and weighs four pounds. That's about the size of "the unit" that generates the Tumor Treatment Fields as well.  Darrell carries the unit plus one or two of the Jameses in his backpack at all times.  I carry one or two back ups.

You can imagine how much more manageable the new system will be.
Device Support Specialist Amy called today.  She's shipping the new system out Monday, and she'll train us on it during the data download on Tuesday.

We didn't want to just box up the Jameses and the doctors and ship them out without you having adequate time to wish them farewell.  They've been steadfast members of Team D.

Here's hoping that your load will be a little lighter in the future as well.

Decadence

Brain cancer is...

 

Birthday Mud Pie at Brophy Bros.

...not saying no.

Just imagine that every awesome food thing we could say "yes" to...we did say yes to!  We'll save you the vicarious food calories--of which there were tens of thousands--and share with you visual calories instead.

Wetlands viewed from our six-mile hike to Ventura Harbor.

Brady, Bennett, and Christian sailed by during our lunch at Ventura Harbor.

The view from our room never got old.

See?

Channel Islands Harbor for lunch today.

We celebrated Beth and Geoff's 35th anniversary with one more calorie extravaganza at Stubriks tonight, and then they bid us adieu.

Back to reality tomorrow.  "Yes" to more weekends away...right?

Beth's Beach Birthday

Brain cancer is...

...enjoying a beach birthday with Beth.

You can see that Beth and Geoff are good friends...looking right!

Darrell's doing great and we're continuing to enjoy the view.

Happy Sunday!

Beach Day

Brain cancer is...

...a day at the beach.

We're having a great time enjoying California's coast.  Here's the view from our room.
We hope you're having a good day too, whatever your view.

Weekend Escape

Brain cancer is...

 ...escaping for a vacation with friends.

We are sharing our train love with Beth and Geoff.  Off to the beach to celebrate their 35th anniversary and Beth's birthday.   That deserves a beach kiss!

Happy Weekend, Friends!