Calling Out the Big Guns

Brain cancer is...

...getting a second opinion.

On our walk tonight, Dr. Park called Darrell.  He told Darrell to double the steroid dose (which was very low--only 2 mg per day), and he told Darrell that Dr. Cloughesy will be expecting our call to schedule an appointment for Monday (6/13).  

Dr. Park's rationale is that he's being very cautious and wants Dr. Cloughesy's opinion on the most recent scans, given the speech difficulties we described. 

By the way, Darrell feels like he's noticing some improvement with just two doses of the steroids.

Team D, this is one of those times when we are carefully selecting our response.  It would be easy to be frightened by this change in plan, but instead we're viewing these really positive things:

• We are glad we asked to look at the scans yesterday with Dr. Dolkar, or the marked increases in swelling may not have come into the doctors' conversation.
• We are glad that Darrell's Orange County team of physicians happened to be meeting on his case yesterday so that they could put the data bits together for a larger picture.
• We are glad that Dr. Park is cautious.
• We are glad that Dr. Cloughesy will be looking at the scans sooner rather than later.
• We are glad that the doctors are not territorial and are able to work so effectively together for Darrell's benefit, even across this geographic region.
• We are glad for another night in the Grand Suite.
• We are glad that you are at the other end of this post, sending your good wishes.

Here's the picture from the post we thought we'd be making tonight:

Today Darrell kept me company for the pleasure of getting my mammies grammed.  (Sorry...no pics of my scans.)  The pic above is the view from the waiting room.  Do you recognize the bridge?  It was a good reminder for us that all of us, from our varied vantage points, are looking at the same world while we work on preventing or detecting or treating our own cancers.

Thank you for your recent outpouring of support and love through texts, emails, and (hurrah!) more Guillaume meals to come. 

Phew!

Brain cancer is...

...holding steady.  (Phew!)

Acceptable news on the cancer front today.  To get right to the point:

• Darrell's Optune data download shows that he was online for treatment for a 93.18% daily average.  Recall that minimal compliance is 75% (18 hours per day).  Big D, the Optune Super Hero!  The data are in an Excel sheet that looks like this:

• Dr. Park and Dr. Dolkar both read the MRI scans.  The perfusion scan is a baseline because it was the first time he's had one.  He'll have it monthly.  So not much news there.

  

  Bottom row contains perfusion scan slides

• The regular MRI scans continue to show "bright spots" around the tumor cavity rim.  It's not possible to say there's discernible change from last month to this.  So no one can say, "Clear!" but similarly they did NOT say there was clear evidence of tumor progression.  We'll take it!  Phew.
• Many of you know that starting in mid May speech became more labored for Darrell.  A few different things may be at the cause:  Tumor regrowth (not yet detected in scans), necrosis (cells continuing to die, which is actually a good thing), or swelling from treatment.  The MRI images, below, show swelling around the resection site in April (left) and May (right).  Note that swelling  increased markedly in May:

Swelling is circled in blue.

•  As a result, Darrell started a very low dose of steroids today to reduce swelling.  If they have an effect, it will be fast--a matter of days.  We'll keep you posted.  
• All that's left for the big cancer day is double chemo.  A breeze!

So many of you were sending us prayers and lighting mental candles and singing songs in your hearts for Darrell today.  They all made it to him.  You make everything a little better.

Here's hoping for a slow news day tomorrow.

Anti-Cancer Sunday

Brain cancer is...

...taking it easy on Sunday.

Tomorrow is a big cancer day:

• First Optune data download (for usage information.  Fingers crossed for 90%!)
• Blood draw (for platelet count)
• Dr. Park (who will read the MRI scan)
• Dr. Dolkar (who wants to check out Optune)
• Month 2 of double chemo, Day 1 of 5

Therefore we had an anti-cancer Sunday.  
We had a wonderful adventure exploring Irvine County Park:

(Summer says that some pics could be photos from our train trip.) 

 

 

 And we ended the day with our traditional Game of Thrones feast, eaten while watching the episode:

From the Wall (mostly):  Lamb, crusty bread, summer salad, and frozen berries in sweet cream (by Summer mostly, Zach on the assist)

 We hope that your Sunday was the antidote for whatever ails you.  Until tomorrow!

Speed Change

Brain cancer is...

...minimizing array change time for Saturday fun.

Today we got our array change time down to a very short 20 minutes.  You can see Darrell's ingenious teamwork plan for shaving minutes of our typical 60-minute time.

A quicker array change leaves more time for...

(Mom:  Notice no shirt has a Route 66 pattern.  That's you.)

...shirt shopping!

We hope you all had time for the things you love today!

Fresh Shrimp

Brain cancer is...

...enjoying the humor of Team D.

You may recall how much Darrell loves shrimp.  In the past 36 hours, he's had shrimp spring roll, shrimp scampi, and shrimp chow mein.


Andi's aunt, Roene Cammack, salutes Darrell's love of shrimp with 12 very fresh shrimp, done in watercolor. We laugh at every one with their comments about California wine, tee shirts, parrots and the like. 


Meet them each in this video

We'd like to thank you for the love and laughter you bring to us in Darrell's cancer adventure.  It does so much for us, like sanding off the sharp edges of a very jagged experience. 

We wish you a wonderful weekend.  

A & T Head Home

Brain cancer is...

...bringing the family back together.

We are thrilled to report that our kids, Tiana and Alex, are heading back to Southern California for several months. 

The fourth and final year of medical school is spent in doing externships in hospitals of the students' choosing. Tiana and Alex applied for and received several externships at medical facilities in Southern California, including (among them) UCI, Kaiser, USC and UCLA.  That means they'll be in the Golden State from August until January.  Hurrah!

They are very much hoping for California residencies upon graduation, and they will be able to interview while they are here as well.

In case we haven't updated you on their specializations, Tiana is staying strong with obstetrics and gynecology, and Alex is thinking Emergency Medicine.

Also joining them is our first granddog, Beowulf.

The far-right photo shows Beowulf wearing what Tiana calls his sassy spring look.  (The other photos are before and in-process pics.)  The sassy look is going to be very important as Beowulf moves away from Pennsylvania and back to his native HOT Southern California.  August 1 blog post:  Beowulf meets Mousse.  Stay tuned.


We knew you'd be happy to hear this great news about kids and dogs.

Hugs to you and yours.

Special Ice Cream

Brain cancer is...

 ...comfort food from great friends!

Today we received a package that we thought contained cancer drugs.  Instead the innocuous brown box was full of six frozen gems of gourmet ice cream.  Teresa says she and Deborah enjoyed it as part of their tradition.  We happily adopt this tradition for Team D, T!

Ice cream is so much better than chemo pills! 

Here's hoping there's something delicious in your Wednesdays too.