Results from December 2013 visit with the Duke medical team

Monday and Tuesday we visited Duke for John's "every 8 weeks" MRI and the follow up with Dr. Friedman and his team to review the results.

This review, unfortunately, revealed recurrence of the tumor.  This is typical of GBM but we had hoped to forestall it longer.

As a result of this discovery we have moved to a new treatment plan. He has been on a monthly regimen of Temodar, which is standard of care. In addition, under the auspices of the trial at Duke, he has been undergoing bi-weekly infusions of Avastin.

The new regimen will discontinue the use of Temodar. He will continue bi-weekly with Avastin and add in an infusion of CPT-11 (aka irinotecan) on a bi-weekly basis. Every fourth week he will also be infused with Carboplatin.  So he will alternate every two weeks receiving either two drugs or three.

We had hoped that John would qualify for another trial underway at Duke that takes a polio virus, re-engineered to avoid its life threatening traits, and directly injects into the tumor.  The result is that the virus seeks to destroy the cell and additionally triggers an immune system response to attack the infected cancer cells.

However we learned that, due to the location of the new tumor, he did not qualify for this trial.

Clearly this wasn't the news we would ever want to hear but we remain positive that some good result will emerge at the end of this journey.

Thank you for all your support through these challenging times.  You cannot ever know how much we value it.

Oh no trip to Durham is complete without a BBQ report. Based on the recommendation of our friend Cedell, we journeyed out to Morrisville, NC to check out some very fine BBQ at Smokey's BBQ Shack.  I can personally testify that the brisket sandwich is delicious.

October Duke visit

Melanie and John have just completed the visit to Duke as required by the clinical trial. The visit included the usual round of MRI, lab work and cognitive testing. He passed all tests with flying colors! The next checkpoint is at the beginning of December.

They had an extended weekend in North Carolina, visiting the Outer Banks on Sunday and Monday. An added bonus was Missy, Melanie's sister, was able to fly down from Connecticut and join them. They will post some pictures and stories from their trip soon.

August Duke Visit

This is  a quick note regarding John's most recent visit with the trial doctors at Duke. As always he had his MRI on the Monday and received the results on Tuesday. The results were very good, even better than the results from June. The swelling seen in June has receded further.

We will be returning to Duke September 30-October 1st for the next update.

Why did John get brain cancer? The answer is Lynch Syndrome

We were puzzled for a couple of months after we received and understood John's diagnosis of glioblastoma multiforme aka GBM. Everything about this form of cancer would suggest that in no way should a healthy 22 year old be susceptible to it. This is a disease that presents itself in a vanishingly small percentage of the population and almost always in patients in their fifties or sixties.

It was only this past February, when meeting with John's radiation oncologist  Dr. Peddada, that we gained some understanding. Dr. Peddada, in the course of reviewing our family medical history, homed in on Melanie's paternal side. The Satkowskis have an agonizing history of early onset cancer, primarily but not limited to, colon cancer. As Dr. Peddada took note of the fact that Melanie's father, uncle and all three of her aunts all had early onset colon cancer, with the aunts additionally suffering from ovarian, uterine and, in one aunt,  brain cancer he came to the conclusion that the Satkowskis were subject to the genetic mutation known as Lynch Syndrome.  A very simple test on John that was then run on Melanie confirmed his supposition.

A good explanation for what Lynch Syndrome is can be found at What is Lynch Syndrome from the NIH

Another good resource for Lynch info is at the UCSF site KinTalk

The impact of the knowledge provided by Dr. Peddada, and subsequently by the Lynch Syndrome team at UCSF, is quite profound, both on our immediate family and on the Satkowski's.  However, with this knowledge members of the family can understand if they are exposed to this mutation and take the important step of screening for the various Lynch cancers. There is some consolation in recognizing that John's diagnosis has provided a chance for other members of his family to anticipate and deal with these cancers in a proactive way, thus enhancing their lives.

Hawaii

The week following graduation in Spokane, John and two of his past roommates, Brian Biggs and Jordan Madrid headed to Maui for a bit of relaxation.  John had never been to Hawaii before and greatly looked forward to the visit. The fact that he was able to enjoy this trip with these two friends was a real treat.

Thanks to Jordan's mom they stayed at a condo in Kihei.  This was the view that they had to live with from the condo:

There were plenty of activities at the condo including tennis and shuffleboard plus they had access to a BBQ.  As you can see below Federer has nothing on these guys...

Impressively for recent college grads, they managed to get up at 2:30am, make breakfast and then hit the road at  3am to reach to the top of Mt. Haleakala for sunrise.  They all agreed it was worth the lost Zs.

They also hit the Big Beach at Makena in Wailea but on a day where the waves were just too big, coming in large swells from the south, to try any boogie boarding. The lifeguards made a point of announcing the shutdown while looking straight at the lads. Wonder why?

Koki Beach

The next day they drove the Road to Hana, 100 plus twists and turns. Along the way they sampled lots of banana bread. ;)

Koki Beach

They stopped off at Koki Beach and got their boogie boarding in.

They also got in a round of golf at Old Blue Wailea.  Hard to hit a golf ball when looking at these views.

John and Jordan

They finished off their trip with a Luau in Lahaina!  Plenty of Kalua Pork, fresh fruit, Filet Mignon, fresh fish,taro and grilled chicken.  John stuck to guava juice but the boys gave two thumbs up to the Mai Tais.

The next day it was back to the reality of the Bay Area and Portland but this was a trip they won't forget.  Rumor had it there were plans being laid on the flight home for a reprise.

June Duke Trial Update

A quick update  - John and I have just returned from the June visit to the Tisch Brain Tumor Center at Duke.  John is participating in a clinical trial that the team at Duke is driving. He is required to check in with the trial team every eight weeks. The main feature of that check in is an MRI which will detect recurrence of a tumor.

This visit showed no recurrence which was wonderful news. We will be heading back to NC in August for the next check in.

While in Durham we were able to see a couple of ex-MMC Networks teammates,  Cedell Alexander and Dave Swingle. Cedell was kind enough to host us at his house for a BBQ and a little last round action of the US Open.  It was great to have home cooking on the road, especially the killer potato salad and baked beans.  They were excellent.

Gonzaga Graduation Weekend!

Mother's Day Weekend was especially sweet this year. As has been done for many years now, Gonzaga University Commencement is celebrated on this weekend with the graduation ceremony on Mother's Day itself.

John has looked forward to this day since April of 2009 when, upon his return from Accepted Students Weekend at GU, he announced his university selection to his mother and father at the airport. He climbed into the car and declared that "We should make plans to be in Spokane on May 12th, 2013. That is when my class will graduate."

Although John was unable to attend school during his senior spring semester, he was eligible to "walk the stage" with his classmates. The school's support continued to be outstanding throughout the weeks leading up to graduation as Shari Rasmussen, Susie Prusch and Jolanta Weber shepherded us through graduation preparation from afar.

We arrived in Spokane on Friday and immediately had to drop John off with his roommates at their house. He had missed them quite a bit and he wanted to spend as much time with them on this final college weekend.  Plus, they had his cap and gown!!

We proceeded to our rental house in South Hill.  There we were joined by all of the family that came north or west to be with John. It was a good sized crew. We were fortunate that his aunts Joyce, Jackie, Tammie and Missy, and his uncles Bill and Mike made the trip.  John's cousins Courtney  and Juliana,  along with family friend Patty Kirchhof, out from Connecticut, also made the trip.

Friday night started what turned out to be the one constant on the trip, dinner at our rental with the family.  We had a great setting to host our family, a large kitchen and lovely patio setting, which was fortunate as GU Graduation Weekend it is a nightmare at the restaurants! Everybody pitched in and we had a great first night.

Saturday morning we picked up John from his house and headed over to the Senior Toast at the Martin Center. We had a nice few minutes with President McCulloh at the Toast before he had to put the finishing touches on his commencement address.  Following this event we proceeded to the McCarthey Athletic Center for Baccalaureate Mass. It was a beautiful service, the second to last event that the seniors would share.

John, David, Brian, Andy Z, missing Andy Kelly

Back to the house we went for another meal and a chance to watch the Warriors playoff matchup with San Antonio.  The 102-92 loss turned out to be the only sour note of the weekend! 

Sunday was  a  beautiful,  warm day.  We were up an at it early as the seniors had to head into their corral at 8:30 am. The academic procession began on time and the largest graduating class in Gonzaga history streamed in to the Spokane Arena.  The speeches were inspiring and appropriately short :) and the reading of the graduates proceeded apace. Finally the big moment arrived and we see John striding across the stage to receive the diploma folder from President McCulloh.

He made it!

Now as you probably know from your own experience, there is no diploma in that folder as final grades aren't in yet and final bills have to be settled. The diplomas follow in the mail. However that folder wasn't empty.  No, it contained the application to join the Gonzaga Alumni Association. They don't miss a beat at GU.

Following the recessional from the Arena, to the tunes played by the Scottish bagpipe and drum corps, the seniors graduates of the class of 2013 gathered for some final pictures and goodbyes.  While an exhilarating time it is also all too bittersweet.

The parents and Godparents managed to get in the pictures too.  We are soooooooo proud.

Dad. John and Mom

Well, it was back to the house for one last dinner and to help celebrate we had a little of Gonzaga Red!

We even had a surprise visit at dessert from the Biggs, Karen, Tom and  Brian GU '13. It was a great finish to the weekend.

John was off to Hawaii a few days later with Brian and Jordan.  There are some great photos from that trip which we'll post soon.

Now it is nose to the grindstone time as John has a couple of classes he is finishing up in summer school to complete his degree requirements. He is furiously banging away at his projects, quizzes, tests, papers and online discussion boards.  We hope to celebrate his accomplishment in the Bay Area sometime in July. Stay tuned.