Saturday, December 31, 2016

Happy New Year!

Brain cancer is...

 ...appreciating both those words:  "New" and "Year."

We found the above New Years Party on our magic porch this morning.  Wheee!  Here's what it looks like when we put on or held everything we could manage and then attempted a selfie:


Dear 2016:  You threw it all at all of us, didn't you?  We are grateful that you are behind us and happy for all of your experiences and lessons.

And just because we promised, here's one last pic of the Dingle Balls of 2016:



Happy New Year, Team D!


Friday, December 30, 2016

So Thankful for the Season...and for YOU!

Brain cancer is...

...still happy about the season.

We told you at the beginning of the Christmas season that we were absurdly happy to see it this year.  Tomorrow is the last day of the year, and we remain absurdly happy.

Above you see the stack of holiday cards we came home to after our trip.  (I purposely blurred it.)  Thank you for your holiday greetings!  We loved receiving your wishes, seeing your loved ones, and hearing about your adventures.

Thank you, Secret Santas! Not one cookie or treat went to waste.  Bourbon shots?  We are saving them for New Years, we think.   We are a very spoiled family because of you.  Can't wait for the reveal!

Team D., in all your many ways, you truly made our holiday special.  Our hearts are full of gratitude and joy.  We hope that your holidays--whichever you celebrate--were and are equally filled with love and sweet stuff.

Darrell and Andi


Thursday, December 29, 2016

Back on the Mainland

Brain cancer is...

...back home in chilly Southern California.

It's not really chilly, but it's definitely different from our Kauai home away from home.

The Lihue Airport wait was not bad at all.  Look at this great high-relief mural.  It really captures the Napali coast:

Security screening went fine with Optune, and Delta raised no questions.  Also smooth was the flight.  It left on time and got in early.  More smoothness:  Our driver, Chris, was at the airport waiting for us.   Guillaume men in action:

There was no LA traffic, and thus we were home 30 minutes after we were scheduled to arrive at LAX.  Now what? 

On to the next adventures, whatever they are!



Wednesday, December 28, 2016

Paradise Day 7: The Last Day

Brain cancer is...
...heading home.

 Day 7 video link

We had a relaxed morning and then headed north to Kilauea for the lighthouse and wildlife refuge. We had fun in Hanalei too. We've dropped off the rental cars and are hanging out at the airport, in plenty of time for our 11:00 flight. We can't get through security until our airline opens to take our bags.   We are wondering what airport adventures stand between us and LAX. Ha.

It has been a phenomenal trip.

Thanks for following along.

We are thinking of you and hope all is well. Hugs.

PS from Darrell: Hopefully there will be no updates to this post.

Paradise Day 6: Happy Birthday Alex!

Brain cancer is..


...very happy to be parents!


Today was a great day celebrating Alex's BDay. We will update with video tomorrow. :)

12/28/16 Update:  The Birthday Video

Tuesday, December 27, 2016

Paradise Day 5

Brain cancer is...




...enjoying the island's offerings.

Darrell woke up worried that we went to bed without posting last night.  We were having so much fun.  Sorry!  December 26 was:
  • Breakfast together on property
  • Island explorations:  Waterfall and great beaches
  • Pool time:  Finally they put chicken in our chicken quesadillas.  Life is tough.
  • Luau:  The elder Guillaumes (Darrell, Andi, Alex, and Tiana)
All of you friends who told us that grown kids are a kick were right. 


Today (December 27) is Alex's 28th birthday.  The kids are celebrating by riding an ATV in the mud.  So glad to be blogging from our king sized bed instead!




Here's to birthdays!

Sunday, December 25, 2016

Paradise Day 4: Merry Christmas

Brain cancer is...

Lobby View Christmas Morn

...celebrating Christmas.

We had a very happy day, Team D., and we hope you did too!













Saturday, December 24, 2016

Paradise Day 3

Brain cancer is...

..enjoying.  Merry Christmas!

We had a great day before Christmas.  It started in our room to listen to the Packers game.  We finished it at the Sports Island Bar.  Go Pack Go.  We won!!

We spent the afternoon with Tiana and Alex at the pool with our first "small blessing"  rainstorm.

Then we had our third annual Christmas date at The Beach House.

Merry Christmas, Team D!!



Friday, December 23, 2016

Paradise Day 2

Brain cancer is...



...enjoying paradise, on the water today.

Let the record show that it was a gorgeous day, full of memories together near, in, and on the water.








We hear it's Friday back on earth.  Happy weekend, Team D. Wish you were here!




Photo credit:  Time lapse sunrise photo by Summer.

Thursday, December 22, 2016

Aloha, Kauai!

Brain cancer is...

...enjoying paradise. 

Once begun, the flight went well.  We checked into the Kauai Beach Resort at 4 a.m.  Yes, the wild adventure was worth it.  We are really here!


Here's a video with some of the highpoints of wonderful Day 1.

















Wednesday, December 21, 2016

Launch! [the Wild Adventure]

Brain cancer is...

...ready for the adventure!

The dog parents dropped off  their fur children at Camp Edwards, with the Director, above.  You can see that the whole family loves Camp Edwards.

The car arrived to take us to the airport early afternoon, and we are writing from our luxurious SUV on our way to LA.

so cal rain

Town Car Launch

Our fingers are crossed that all goes smoothly getting through security and onto the plane.  If all goes well, you'll hear from us next from Kauai!

Much love and Mahalo!

UPDATE

we are on the plane! There was a three-hour delay, which was easy...given our state of gratitude! Security and boarding with Optune were simple. I cried when I thanked the TSA agent.

Power smile

UPDATE 9:40 pm

We are sitting on the ground at LAX. We have an electrical problem so need to deplane. But all the gates are full so we are drinking free water. Alex is behind me saying, "You can't make this stuff up." H2O cheers!

UPDATE 10:44 pm

We got off the plane and off...at our original gate.
Just so you know, I am still having fun. Really. I won't ask any of the other family members, but they are all being great sports. Darrell got a second free glass of water to take Day 3 of chemo.

LAX Holiday Party  late night

UPDATE 12:03 am

After a rest time

We are on a new plane, still power smiling!

Tuesday, December 20, 2016

Christmas in Kauai

Readers Advisory:  This post is long and emotional, but it ends well with tons of gratitude to the goodness of people in our world today.

Brain cancer is...

 ...not as difficult to deal with as Hawaiian Airlines.

Now that there is a happy ending, we can share this story.  Months ago we booked a Hawaiian Airlines package; it was to be the first time the six of us all traveled together.  Doesn't it sound fabulous to spend Christmas on Kona?  We thought so too...the family together in paradise.  For Christmas Day, we chartered a private boat with captain and crew.  You can imagine how we've been looking forward to this escape.

About two weeks ago, things started to go awry:  Darrell's Optune system is driven by Lithium Ion batteries, which are allowed by the FAA.  I contacted Hawaiian Airlines to ensure things would go smoothly for us to travel with Optune and its batteries.  No approval should have been necessary given FAA regulations, FDA approval, and a letter of medical necessity from Dr. Park. 

However, I included all that information and materials in my repeated requests for assistance.  They did not respond to these requests.  Had they just told me, "no," I could have cancelled and booked with a different carrier.  Instead they were silent. They exhibited a toxic combination of ignorance and indifference.  The degree of stress this introduced into our family was extreme. 

Fast forward to the happy stuff:  Late last night (12/19), our Attorney from Heaven was on the phone with the airline, still looking for their assistance--less than 48 hours before boarding time.  Today she cancelled the trip for us and is seeking full compensation for our trip expenses.   Meanwhile, our Travel Agent from Heaven was able to book a new package with Delta (which allows Optune) via a direct flight to Kauai, the garden isle. Three lagoon-view rooms, two rental cars, new hope for the holidays!

Earth Angels of the Day

  • DeniAntionette Mazingo, Esq.:  DeniAntionette reached out to help us because humans should take care of each other.  She is a woman of faith and strength, and she didn't cry once in any airline phone call.  Our gratitude to DeniAntionette is extreme.  We predict that we have started a friendship that will last.
  • Cristina Goodman:  Cris has booked wonderful vacations for our family in the past, and really saved us this time.  Cris spent hours and hours on this booking.  She gave her time freely, and she gave me strength with her faith, great advice, and expert knowledge.  We are so fortunate for the continued prayers from both these earth angels!
  • Hang Loose Boat Tours:  Because we couldn't get to Kona, we were forced to cancel our Christmas Day charter.  Hang Loose was within their rights to collect half of our substantial purchase price, but given our story, John and the owners gave us a full refund.  Truly they exhibited the Aloha spirit!

And on the Angel Assist...

  • Curt Welshon, for finding DeniAntionette, sharing our story with her, and putting us in touch..
  • Meridyth Munns for sustained indignation and putting us in touch with Cris.
  • Melanie Munns for, along with "her super smart pilot," providng the Delta lead..
  • Optune Amy, for continuing to represent the best that Novocure offers.

Aloha, Team D!






Monday, December 19, 2016

Good Blood

Brain cancer is..

...about to get hit with more chemo.

Darrell is power smiling because his blood work results.  All of the important measurements are within "normal for cancer patient" range, so he will start round nine of maintenance chemo today. 

Levels tend to drop successively with each round of chemo, so we were particularly impressed that Darrell's super blood is stronger today than it was during last month's test.

Dr. Park did hear a bit of a heart murmur, so Darrell will have a "baseline echocardiogram" in a few weeks to begin tracking it.  He didn't sound worried, just careful. 

May all Team D murmurs be innocent!



Sunday, December 18, 2016

Back to business...Almost.

Brain cancer is...

...spending a few more hours in the sun before getting back to business.

We enjoyed a dog romp at the beach with pups, Zach, and Summer before heading back home.

Note Mousse's approach in contrast to Beowulf's approach:


Tomorrow it's back to business with cancer eradication efforts.  Darrell sees Dr. Park for blood work, scan scheduling, and a check up.  If blood counts are acceptable, Darrell starts another round of chemo tomorrow.

Happy Sunday!


Saturday, December 17, 2016

Christmas in Carpinteria

Brain cancer is...

...living it up at Christmas!


We celebrated with Sue (far right), Zach, Summer, and the dogs in Carpinteria today.  Family and friends:  So fun!  Thanks for hosting, Sue.  Much love.

We hope you are enjoying your day too!

Friday, December 16, 2016

Fellow Zombie Sisters

Brain cancer is,...

...along with its siblings, forming huge teams of superhuman zombies.

After breakfast Darrell told Gordon about the effects of treatment; he described his view of brain scooping, radiation sickness, and chemical poisoning.  In short, he's a zombie, walking as zombies walk (above).  Of course he was not totally serious, but no cancer patient comes out unscathed.

Nancy, he coined the term "fellow zombie sister" for you because you are undergoing radiation.  Do you walk like this?

We also are sending all of our zombie love to everyone who is currently undergoing cancer treatment. You are receiving all the best we have to offer.

Also I wish for you what I received today:  A mountain monogrammed in our honor.

 
Enough said.

Thursday, December 15, 2016

We Are the Champions!

Brain cancer is...

...far eclipsed by the day's many high points.

  • It started this morning, when Darrell beat me to the top of the hill on our walk (above).  He often gives me a hard time about walking too fast, so he really celebrated big.
  • Summer was offered (and accepted) a paid position--with benefits!--at her clinical site, Help Line Youth Counseling.  What an incredible compliment to her skills!
  • Zach was offered (and accepted) an internship with one of his professors for next semester.  AND he finished the last paper of the semester:
  • Tiana interviewed at Austin today, and Alex interviews tomorrow.  That is the last interview before Christmas!
  • We ended the day with Darrell singing in the rain (literally):
 Hugs from the Guillaumes in deliciously rainy Fullerton.

Wednesday, December 14, 2016

Parenting in the Digital Age

Brain cancer is...

...thankful for the silicon chip.

Our kids had cellphones with texting capacity starting when Zach was new to junior high school and Alex was new to high school.  Our gratitude for the silicon chips started right then.

I recall being grateful when I could text Alex and tell him he forgot his chemistry extra credit assignment.  And we felt really grateful when Zach texted us with the allegations against him before he made it to the office and we heard them from the principal.  (He was not guilty, by the way.)

Some things never change.  Here's our text exchange with Alex today, who is in Austin, Texas:



What did you pre-cellphone parents do? We are so very thankful for the digital age!

Darrell and I finished our Christmas shopping today.  Here's us celebrating:




We hope you had something to celebrate today too.



Tuesday, December 13, 2016

How Engineers Decorate Gingerbread Houses

Brain cancer is...

...not at all interfering with our design skills.

We four engineers designed the gingerbread house today, using everything we knew about structural integrity and materials science.  One thing we demonstrated:  fondant is highly malleable and ductile, which makes it great for forming Christmas snakes.  You'll spot one near the front door.

In case you're wondering what it looks like to take a panorama picture of a gingerbread house, it's like this:

Forget that family photo for next year's card!  Ha!

After working so hard on our design, we ate this:

Santa, you're the best!

Family updates:
  • It looks like Darrell will be able to hold his cold to the "mild" sort.
  • Summer finished all of her papers for the semester.
  • Zach is down to is last one.  
  • Alex and Tiana just texted from Denver.  They both really liked the institution and the city.  Texas, here they come (again).
 We are thinking of you and yours today. 


Monday, December 12, 2016

The Closer We Look

Brain cancer is...

...relishing daily opportunities to look a little closer and see a little more.


Darrell contracted the family cold, so we're encouraging him to take it a little easier.  We are so very thankful for the gift of every day when the worst possible news we could report is, "Darrell has a cold." 

We hope that we've emphasized in our postings that there is not a single day for which we do not feel gratitude.  Maybe 2017's word will be "grateful." We're still thinking.

In the meantime, the word of the day was "look."  We go to Craig Park daily, but the closer we look (and listen) the more we see (and hear).  Today we listened to the recordings found along the park in QR codes.

We learned that right at the entrance is a rose garden, named after Peggy Craig, who orchestrated the project.  (You can hear the recordings too, by the way, at this link.) We drive by her garden every day and yet never really saw it.


We also spent several minutes in a staring contest with this squirrel:

We are wondering who learned more:  D & A or the Squirrel.

We hope the worst of your news today is no worse than a cold (but we are sorry about the cold).

Sunday, December 11, 2016

More Lights, More Holiday

Brain cancer is...

...lighting up the holidays.

We added more lights to our celebrations today:  those on the house.  We also walked at the park, watched the Packers beat Seattle, and sat by the fire.  Of course Darrell was right again.  It was another great day.

Happy Sunday, everyone!

PS:  We love you Santa.


Saturday, December 10, 2016

Great Friends

Brain Cancer is...

 

...enjoying great friends.

Here's to celebrating wedding pictures and all that.  So many happy pictures in our minds!

Updated 12/12/16:

Here are a couple more photos of a great evening with the Welshons and Szabos.

This time you can see Beth:

But not so much in this one:

Long-time readers might notice some 2016 hat highlights.  It'll be difficult to beat the hats of 2016, but we can't imagine a team more prepared to give it a try!






Friday, December 9, 2016

Andi Married a Bear

Brain cancer is...

...giving us a reason to consider topics new to us.


Today at breakfast, Gordon asked, "Is that the only hat you own?"

No, Dad, look at our back seat:

But Darrell does think a lot about hats these days.  Here's how he greeted me this morning:






Of course it's blurry.  I was sleeping.  His exact words?  "Look!  Hoodie equals instant hat!"

I decided that, in his favorite hat...

...my husband looks  like the main character in a much beloved series of books from my childhood:  Paddington the Bear:


Summer's emoji text to me said it all:


Translation:  "Andi married a bear."

There are so many much worse fates!

Happy Friday!