Melanie's remarks from the memorial service in Plainfield, CT

Many of you who attended the memorial service in Plainfield, CT asked if we would post Melanie's eulogy of John. You will find it below.

As most of you know I am a teacher. I am always guiding students in life skills as well as teaching them skills for a life time of physical activity. Twenty months ago on a sunny day in January when my son was diagnosed with terminal brain cancer I became a student and he became my teacher.

The maturity that John Foster displayed upon receiving the diagnosis of this life shortening disease was met with courage and bravery beyond his 22 years of age.

John did not back down from the news. He helped us to learn all that we could about treatment, love, respect, patience, faith, and hope. He met each challenge head on and kept up his fighting spirit until the end.

I thank him for the lessons well taught in a dire situation.

John Foster created a bucket list, not a long one, but most of the items revolved around time with friends and family, doing what he loved in life with the people he carried about. He also had a love for food and cooking and “chemistry in the kitchen” as he called it!

John’s dedication to his family and friends was admirable. Although we are approximately 3000 miles away from most of you, he was always curious as to what the east coast family was up to. The phone call, cards, emails and social media postings helped John Foster “keep in touch” with life on the east coast. He also got to brag about his San Francisco Giants, Warriors, and 49ers with some of you. The special bond that was forged in childhood trips east remained with John Foster as an adult.

The fun times jumping waves, playing Whiffleball , eating lobster at the beach, picking blueberries, going to UCONN for ice cream, sledding and skiing in the snow and visiting with his family and friends here remained near and dear to his heart. 

Just last summer, on a quick trip east in between treatments at Duke, he enjoyed some special times and special treats with many of you. He was looking forward to visiting again this August but this was not to be.

He loved it all and most of all he loved you all. John Foster did not back down from this disease; he was courageous and brave and had faith. He was and will always be an inspiration to me.

I would like to leave you with a few thoughts from a sentiment that a friend of mine sent me when she heard of John Foster’s passing:

Do not grieve the loss of my love; I am still by your side. I have not left you, but instead I am walking beside you. It is true my earthly body is gone, but my spirit lives forever. I am now one with the Holy Spirit, and I am one with you.

Speak to me, and I will listen
Listen for me, and I will respond.
Look for me, and you shall find me.
I am everywhere at once.

I will speak to you through your thoughts, and dreams and through others. 
I will be the wind which whispers in your ear.
I will be the sun which rises in the east, and the brilliant sunset of the west.
I will be the moon which lights your nights, and the twinkling stars above.
I will be the rains that wet the land and quench the thirst of life.
I will be the sunlight that warms the earth, providing the world with light.
I will be the flowers blooming in springtime, and the colored leaves of fall.
I will be the violent storms of summer, and the glistening snowflakes of winter.

Dry your tears and cry no more, my life is untouched. I rest in the house of the Lord, and we shall meet again. 

Remember me for what I was, only the good, not the bad. Remember the good times we have had together, not those which upset you or make you sad.

I have been given the wings of angels, and my souls soars high into the heavens. I am free like the wind, and my life is eternal.

If you thought I would live forever, you were correct. 

I am alive inside of you.

Stephen T. Fader

                                                                              Peace

East Coast Memorial Service and remarks from the rosary in San Jose

There will be a memorial  service to celebrate John's life on Saturday, August 30th at 11 am EDT. The service will be at:

Dougherty Brothers Funeral Home

595 Norwich Road

Plainfield, CT 06374

There will be a lunch reception following the service at:

The Spa at Norwich Inn

607 West Thames Street

Norwich, CT 06360

Directions to the Norwich Inn

Please RSVP to Missy Plante at melissa.plante190@me.com

Following the rosary and vigil on the 13th Melanie and I were asked to post the remarks I delivered. You will find them below.

One year, seven months and twelve days. Too short a time and yet in that period, from detection of his disease until his passing on Friday, John spent every day enjoying life and growing into manhood. A parent wonders as their child grows, “What kind of a person will he become?”  And in the normal course of events that parent might have to wait years to see if their effort to produce a moral person, a caring person, one whose attributes truly reflect conscience, compassion and competence, was fruitful. Yet somehow in this short time, the crucible of his disease accelerated his maturation into a kind, compassionate, generous man; a man that would make any parent, especially this parent, proud.

I have often remarked how amazed I have been at the manner with which he responded to his disease and its prognosis. That if it had been me, at the same age as John, there is exactly zero chance I would have responded with anything close to his equanimity.  And I know that his ability to persevere is truly a credit to his mother.

In the days since his first seizure, when his friends were with him as they prepared to play football and had to respond to that sudden crisis, to the final night when one of his cousins and one of his friends were with him, Melanie and I have had the wonderful opportunity to see just how much love there was in John’s life. His friends, whether from Little League, our Berryessa neighborhood, Harker Academy, Bellarmine, or Gonzaga, and his family of beloved cousins, were constantly by his side; encouraging him, celebrating the good times, sharing stories or sometimes just being with him quietly.  Their goodness and kindness showed us that he was truly blessed. 

We thank their parents for raising young men and women who unflaggingly gave of themselves to John’s care. We know you have had some very tough conversations with your own children, conversations mirroring our own, that often would involve the word “Why”. Your love and support in turn gave them the strength to support John. Your efforts will never be forgotten by Melanie or myself.

Melanie and I have seen, and felt, so much love.   However, we also have seen too much pain and confusion. In the final eighteen days while John was in hospice care, as the hope for a cure dissipated, the pain on the faces of his family and friends was palpable. This is a natural counterpoint to the greatest emotion, love.  But we would never feel pain if we never felt love. And the greater the love, then commensurately, the greater the pain.   This, being the case, then John was truly loved beyond measure.

Yet you cannot allow that pain to overwhelm you to the point of despair. I have seen some of you on the brink both in word and look. Despair is emptiness of hope. It is an emotion that John absolutely rejected, even on his worst day. We all must do our best to emulate John and always have hope.

A great friend of mine shared this quote when he heard we had entered hospice care. I think we should all take its promise to heart.

"Yet, by the grace of God, time takes its toll not only on youth and beauty, but also on tragedy. The tomorrows come almost against our will. And they bring healing and hope, new responsibilities and new possibilities.'' 

AMDG

In lieu of flowers

In lieu of flowers please consider a donation to one of these two charities.   As you know John loved his years at Bellarmine so he asked that donations be made there. The link is Bellarmine donations.

He also was very grateful to the team at the Robert Preston Tisch Brain Tumor Center for all of the support they provided. Donations can be made via John's Tumor Warriors at Duke donations


Thank you for your consideration.

Services in San Jose for John

There will be visitation hours for John at Darling-Fischer Garden Chapel, 471 E. Santa Clara St, San Jose on Wednesday August 13th from 4-9pm, with a Rosary at 7 pm.

On Thursday, August 14th there will be a Mass of Christian Burial at St. Victor's Catholic Church, 3108 Sierra Road, San Jose at 10 am.  A reception to continue the celebration of John's life will be held afterwards.

In lieu of flowers please consider a donation to one of these two charities.   As you know John loved his years at Bellarmine so he asked that donations be made there. The link is Bellarmine donations.

He also was very grateful to the team at the Robert Preston Tisch Brain Tumor Center for all of the support they provided. Donations can be made via John's Tumor Warriors at Duke donations

There will be a memorial service and celebration held in New England so as to share the journey of John's life with his east coast family and friends. The date and time are TBD.  I will update the blog with the details as they emerge.

John's race is run

John passed away today, 8/8/14, at 2:40 am. He was in comfort at the end and had the company of friends and family.

Information regarding the services to celebrate his life will be posted as the conclusion to this blog.

I would be remiss if I didn't share this picture from Tuesday night when John was still lucid and enjoying life fully. We had hoped to have been in New England at this time to be with Melanie's family. The disease's progression prevented that but friends and family there ensured we had a taste of New England as compensation.  Here is John enjoying fresh lobster and oysters from Rhode Island.  He surely did enjoy the culinary delights.

John's status 8/7/14

John's pain level transitioned to a new, higher level overnight. Hospice has modified his pain management regimen to accommodate this change. He is resting comfortably now but is sleepy.

As John moves into the final stages he will have a diminished ability to respond or interact. Ultimately he will slip into a coma and become non-responsive.

However I would encourage those who visit to speak to him in a quiet and soothing manner. Hearing is the last of the senses to go and the human mind can appreciate the presence of friends and family even if unable to respond.

John's situation is evolving

John had an excellent day yesterday and I will put up some pictures on a later post regarding how Tuesday went, but today we are seeing further progression with his disease that impacts visitation.

Today saw a significant spike in his pain level which triggered a number of side effects which required our full attention. The hospice team has adjusted his medication to address the breakthrough pain and hopefully this will prevent another occurrence for a while. 

First I want to thank all of you that have either come to San Francisco while he was in their hospice care or those that have come to our home since last Friday.  John has enjoyed those visits thoroughly as I am sure you experienced. However, I expect those that saw him a week or more ago at UCSF, and then this week at home, have noted that he is increasingly drowsy and lethargic. 

John enjoys visits, especially from his wonderful friends from all over, as well as his beloved cousins. However one of the changes we want to apply to visitation is, that while we still encourage visitation, we may designate a day as a "quiet" day where we have limited to no visitors.  Additionally, even if  you have planned with us a visit it may turn out, as it did today for my aunt and cousins who came by, that not only was John unable to visit but we were tied up with his care. Luckily that part of the family can entertain themselves quite well :) I encourage all to check in via text or call to me (408) 712-4930 that it is still a good day to visit prior to coming over. 

I hope you all can understand our need to apply these constraints. Do not hesitate to come but do understand if we decline for a given day. We know that we have tremendous support from all of you, not only now, but all through the journey.  Your love, prayers and thoughts have been a salvation for our family.  Thank you.

Heading home on Friday

If John continues to be stable over the next two days, he will be going home to complete his hospice care. The pain management at UCSF has not had to change for several days.  As medical intervention is not needed at this stage of his disease, John would like to return home. If all goes well we will be there on Friday, for the duration.

He's had several nice surprises the past two days.  His colleagues from SCU's University Events Planning office, where John worked in the fall and spring, arranged for a brick in his name to be added to the walkway at the new home of the Forty Niners, Levi stadium.

He received a Brandon Crawford autographed bat arranged for by the Kauderers.

Also a Crawford ball and bobbleheads from his aunt Joyce.

He also received this special video message from  Klay Thompson, his favorite Warrior, arranged by his cousin Courtney.  John and Courtney shared a Warriors mini-plan this season and really enjoyed their run in the playoffs.

However the most important gifts were the visits, calls, emails, and prayers from his friends and family. These have touched our hearts deeply and Melanie, John and I cannot find the right words to express our thanks. It is so overwhelming.

We will post again after we get re-established at  home on Friday (fingers crossed).

An eventful week

John has been in hospice for a week. The hospice team of nurses, nurse assistants and palliative care doctors has been outstanding. The first couple of days focused on finding the optimal format for providing pain medication. They ultimately settled on a constant intravenous drip (basal level) that is adjusted over time to eliminate episodes of pain.  As soon as he experiences pain he is provided with additional (bolus) dose. Looking back they adjust the basal level to match the prior level plus the bolus injection so he, for a time, doesn't need to have additional injections. He's had his basal level modified two times in the past five days and has been holding constant for the last two days. Pain management of this sort has been critical as it grants him the ability to have significant periods of lucidity. 

Saturday John's two dogs "snuck" into the hospital.  It was a wonderful surprise.

He has had many of his friends and family come to visit and has enjoyed hearing the latest news from them about their lives and careers.  Of course there has been time to harass one another too in true buddy system fashion. :)

Yesterday saw the departure of several of his college roommates and friends. This was truly a bittersweet time. It is so good to see one another but knowing that there are not many other opportunities for all to be together again tempers the joy.

My newlywed cousin, Jeannine and her husband Ray, in conjunction with John, announced that their new section of vineyard in San Diego will be named after John.

John spends an increasing part of his day taking naps. This is the common progression of this stage of the disease. It is partially induced by medication and partially by the impact of the tumor on the brain.

We continue to enjoy each day together, fortunate to have the friends and family to support us.

A wonderful day with John on Wednesday

John had a very restful night's sleep Tuesday night, awakening just before sunrise on Wednesday. The hospice floor at UCSF is on the 14th floor of the 505 Parnassus building. This places it on a ridge that has a panoramic view of the Golden Gate, Marin Headlands, the GGB, Golden Gate Park, USF and St. Ignatius church all the way to the east for much of the downtown skyline. In the distance the east-shore of the bay is awash with twinkling lights at night while the towers of St. Ignatius are lit up.

As the sun rose we saw that John was sitting up and he revealed that he had some lingering thoughts from the past two days to consider. They were of the sort you might imagine arise at this time, and were good to go through as a family.

Just before 8 a friend who happens to be a neuro-nurse here at UCSF popped in. She dropped off a tub of coffee and a box of bagels.  John surprised us by asking if the food and coffee were for him. The nurse confirmed he could have what he'd like as long as his stomach could tolerate.  He plowed through coffee, bagels, popsicles (cherry), and a cinnamon roll from the awesome Peters Bakery on Alum Rock Ave near our home. He was quite content.

The previous two days had seen a flurry of visitors, both family and friends. However, as the hospice team had been struggling to finetune his pain medication, much of John's visitation with them was hazy.  Today he was very lucid as they had zeroed in a good baseline dosage. So his conversations in the morning with his grandparents, cousins, uncles, aunts, cousins and many friends went really well. He napped till the start of the first place Giants game and enjoyed watching another win. While watching another splendid sunset, he indulged in not one but two milkshakes; one from Mitchell's and the other from Mel's drive-in.

He now awaits the arrival of two of his college roommates who are flying in from the northwest this evening. Two more arrive tomorrow and that is an eagerly anticipated arrival.

In all we had a fine day and hope for the same tomorrow. We are taking it one day at a time, focusing on his comfort. Thanks again to all who have come by or called him.  He truly loves you all.

Starting the last mile with John

John had to return to ER again  Sunday night with massive headachse and vomiting. As part of the assessment they ran an MRI.  We reviewed the results Monday morning with the head of neuro-oncology at UCSF. The results were very clear cut; the tumor, which had been aggressively resected three weeks earlier, has returned with a vengeance. There are no therapies or interventions that would do other than make him suffer and would not slow the tumor down.  As a result John, Melanie and I agreed that he should move to hospice care.

He is in room 1435 at 505 Parnassus. He will be here for the last mile of the journey in this life. His family and friends have been visiting which brings him comfort.  We will post information about services when the time arrives.

Our son is very brave and kind.  Do not despair. He loves all his friends and family and would not want you to be so. He is in comfort now and will be so in the next life. Thank you to everyone for your prayers and support. It has been invaluable to John and our family.

He has fought the good fight. He has finished the course.  He has kept the faith. So must we.

Unexpected return to the UCSF ER

Thursday evening John experienced severe headaches and vomiting.  This continued into Friday morning. We had been consulting with the  UCSF neuro-surgeons since Thursday. They modified his steroid intake but as this was not taking hold they asked him to come to the ER at UCSF. He was admitted, whereupon a CT scan was performed to determine if there was any bleeding as a consequence of his surgery last week. Fortunately that was ruled out.

The doctors determined that the pain was caused by a too rapid taper of the steroid course .  He has been treated the past two days at UCSF, drawing down the inflammation while restarting the steroid treatment, with a slower taper planned. He showed excellent improvement, with a good night's sleep Friday night and experienced the same on Saturday night.

He will be evaluated later today, Sunday, and we hope he will be discharged today.

Update - John was discharged on Sunday evening. After a quick bite to eat we returned home and he had a restful night's sleep in his own bed. He is looking forward to a visit this week from his Godmother, Aunt Missy and a family friend Patty, both from Connecticut.

John is home and recovering

John was discharged from UCSF on the 4th of July.  After we left the hospital we were able to have a late lunch with his college roommate Brian at Pasquale's. We then spent the 4th at our friend Phil's home, aka Casa G, in San Francisco. Melanie and I have been gratefully using it as base camp throughout the week. A couple of John's friends who live in town were able to visit him there. John was a bit tired from the discharge exercise and we didn't want to battle traffic back to SJ.

If you haven't experienced the 4th in the Mission you haven't lived. There were moments in the evening where my training weekends at Fort Ord while in ROTC came back to me...

Saturday we said our good byes to Phil over milkshakes at Mel's Diner and headed home. John has been resting and visiting with friends in San Jose. We return to UCSF Monday the 7th for a post-op follow up with Dr. Berger's staff.

The MRI taken after surgery showed that the resection was very aggressive and was able to remove much of the tumor(s). However there are remnants of the tumors in two locations. This fact restricts the number of trials or therapies that can be pursued. Many of the most advanced therapies can only be administered if there is a single tumor site. However there are other treatments we will evaluate while he recovers from surgery. And Dr. Berger said that he is prepared to go back in as needed to hold this thing off.

John will  schedule out patient Physical and Occupational Therapy here in San Jose. He will work hard to regain as much functionality as possible in his left hand and wrist, as well to ensure he doesn't trigger new issues while compensating. He wants to hit the links as soon as possible.  Gotta have goals!

John looks forward to seeing his friends and family during his recovery. He really values the time he gets to spend with everyone. Don't hesitate to reach out to him. If he is tired he will let you know, but he is as engaged as ever with life. We just need to have the Giants keep winning and his recovery will speed up :)

Thanks to all who have been supporting us throughout this drill. We've reached this stage only by having that support. It has meant the world to us.

Spent the day with John

He had a couple of seizures overnight but that is not unusual. The CT scan was good. He is now getting a post-op MRI.

John is hard at work on his recovery. Today was spent with Occupational and Physical therapy. They did their assessment and got John up in a chair for a substantial portion of the day. They will be back tomorrow with some specific exercises and gizmos to help with his left hand weakness.

He has started eating normal food, including some pizza from Pasquale's. Always go to the one on 8th and Irving. We'll be listening in to the Giants game tonight.

Thanks to all who contacted us about visiting. He is looking forward to visitors but please contact either Melanie or me before coming in. His schedule is in flux and there is the possibility he will be changing wards tomorrow.

Post-surgery update

This is a quick update following today's surgery at UCSF.  The surgery went well. Dr Berger, head of neuro-surgery at UCSF, explained the procedure and that the execution went precisely to his plan.  He was able to both remove the top layer of tumor, which he felt was triggering much of the seizure activity, as well as remove the bulk of tumor that was pressing against the motor skill area. Because he was able to work with John "awake" for part of the surgery he was able to be more confidently aggressive.

John had a little post-op vomiting and is not unexpectedly tired. We will head back over there tomorrow. He will be kept till at least Friday as one of the trial medications, ALA, used to highlight the tumor locations, makes the patient very photo-sensitive and if exposed to light will lead to a nasty rash. It takes about 72 hours for this drug to clear a patient's system.

Melanie and I left John at UCSF's NICU about an hour ago. NICU is not structured to handle many visitors.  We hope he will be moved to a regular room by Thursday though that is subject to the doctor's instruction.  Once he is moved to a regular room (and I will post when that happens!) he will be able to handle visitors.  Till then please contact either Melanie or me before planning a visit as this was a pretty significant surgery.

Thanks

health status and plan of action as of 6/28/14

John's physical condition has declined due to tumor progression. He has lost the use of his left hand, being unable to extend it after closing the grip. His grip is markedly weaker in that hand. His left wrist is also affected as he has great difficulty in maintaining strength on the outside portion of his wrist. His left mouth is affected with a bit of droopiness and numbness. This decline began at the start of June and has gotten worse throughout the month.

We visited University of Utah Tuesday and Wednesday of this week.  Since the last post we were able to get John into  trial being run at Huntsman Research at the University of Utah.. The lead investigator is based at MD Anderson and Huntsman was in the second wave of sites to open up.

John had been taking the medication since June 3rd so this visit was to get the first indication if this therapy is providing any benefit.  On Friday morning we reviewed those same results with our local oncologist Dr. Cabebe (SI class of 1995) and Dr. Friedman from Duke.  Both doctors felt that the therapy was not working and that the tumor was progressing. 

We discussed various courses of action and firmly concluded that the next step is to again do surgery to remove as much of the tumor as possible to buy additional time. John is scheduled to be operated on Tuesday, July 1st, at UCSF by the head of neuro-surgery, Dr. Mitch Berger. This surgery is not a cure, but we hope it will give time to line up additional therapies.

Several therapies were discussed Friday and we are organizing a plan to set an appropriate sequence to them.  In any event the therapies would not be applied till some several weeks following surgery to allow the brain to recover. Thus we have time over the next week to get them organized. We have options.

At this point you have all the info we have. John has a little sore throat so say a prayer it doesn't get worse as a fever would delay surgery.

Before all of these 

A few fun things this past month

While John's main focus is on battling the disease he did squeeze in some fun. In late May  he was the guest of his Peyovich cousins for a golf outing at the Moraga CC. It is a beautiful course above St Mary's College with many challenging holes. Playing well into darkness the evening was capped off by a bite to eat at Nations in Orinda!

John also really enjoyed a week long visit by two of his college roommates, Andy Kelly and David Scanlan.  They stayed over in SF one night, visiting with another of their roommates, who now resides in The City,  Brian Biggs and attended a couple of Giants games.

The visit was capped off by a three day, two night trip to Lake Tahoe where they golfed, hiked, fished, and generally had a good time.

In between SF and Tahoe they squeezed in a trip to Capitola and the World Famous Henry's Hi-Life.

Update on treatment options as of May 13

We are still in a bit of a holding pattern regarding the next course of treatment for John. One thing is clear though we will not be heading to Duke this weekend. The current batch of trials underway there are not pertinent, yet, for John.

When we started reviewing Phase II/III trials at other centers  there were  about a dozen potential trials. A large number turned out to either be closed to new recruits or John, due to a combination of factors, was not eligible.

For a trial at Northwestern, we are waiting on the results of tumor testing. That will take approximately two weeks. This trial,  is for patients with particular mutation in the tumor's FGFR receptor. This mutation shows up in just three percent of patients with GBM. However for those with the mutation this is the pertinent trial.

We are also awaiting word on access to a trial still recruiting at MD Anderson in Houston. It may soon be opening up recruitment at other sites around the country.

Finally we are awaiting some feedback for a Phase II trial underway at UCSD.

As I mentioned in the last post, we have a little time to do this review  as he could not start participation till he metabolizes the last round of chemotherapy, in particular the carboplatin treatment. Even though we know that will complete in two weeks, trials don't hold slots. You basically have to be ready to go when you are ready to go.

It is more than a little frustrating not knowing now what the next steps are but we have to be patient and work through the details. I will post again as soon as details come into view.

In the meanwhile we keep busy at things like shirtsleeve weather at the ballpark:

Another seizure and with it a tough update

John had his second seizure this year, this time last Thursday evening, as he was preparing to play basketball in Sunnyvale. His friends Lawrence Milan and Chris Zhou were with him and quickly got him emergency care, contacted Melanie and me, and had John in an ambulance down to Good Samaritan hospital in short order.

There he was treated and released after a review and additional anti-seizure medications administered. He was scheduled and received an MRI yesterday, May 5th. Today, the 6th, we reviewed the results with John's lead doctor, Dr. Friedman, at Duke University.  The news was a bit hard to take. His tumor has progressed and is causing the seizures. The current chemotherapy regimen of carboplatin and CPT-11 will stop as they are not effective.  Dr. Friedman is researching additional therapies to apply and we will have a conference call with him on Thursday to review the next steps.

One of the hardest bits of news was to learn that the anatomical structure of this progression, into a multifocal tumor (i.e. more than one tumor arising from one original tumor), precludes him from utilizing their most cutting edge treatment of injecting the tumor with a re-engineered polio virus. Because there is more than one tumor, multiple catheter insertions would be needed and there is no known safe and effective way to do so.

We remain hopeful that the team will find some course that will arrest the progression. Till then we ask for your thoughts and prayers.

This won't happen ever again - I recommend you pick up this week's People magazine

I am not a big fan of People magazine. In fact I never read it. However this week's issue (the special double issue of People's 50 Most Beautiful - really???) contains a story about Stephanie Lipscomb. She is the first person to be treated with the re-engineered polio virus developed by Dr. Gromeier at Duke University. It is such an encouraging story and is literally the living proof, in the form of Stephanie, that your donation to the Angels Among Us fund is having a critical impact on moving science from the lab to the patient.  John's Tumor Warriors Page

Thank you!

A request for support AND an update from the March trip to Duke

Hi,

A request for support:

Yes, the first part of this post is to ask you for monetary support of Preston Robert Tisch Brain Tumor Center at Duke University. This is the home of the world class team of researchers, doctors, nurses and staff that spend their waking hours looking for ways to defeat brain cancer.

Once a year they host a fundraiser known as Angels Among Us, a 3K/5K run combined with a silent auction and a survivor recognition ceremony. Now in its 21st year, it has raised over 14 million dollars to support the Center.

We have formed a team, John's Tumor Warriors, to raise funds for the organization that is central to John's fight against Glioblastoma. Our team page is at John's Tumor Warriors Home Page.  If you feel you can support this cause you will find a link to the donation page underneath John's Gonzaga graduation photo.

We will not be running in this event, as it is hosted on the Duke campus and falls between our bimonthly visits. However, for consistency,  I will be running the Presidio Trail Run on Sunday April 27th :

Besides this invitation to contribute there will be one other email that comes to you directly from the event website.  Thanks in advance for any support you can offer.

The latest Duke report

At the end of March John, Melanie and I made our every eight week visit to Duke. This visit was particularly suspenseful as it was on the heels of the seizure episode in mid-March. It was also going to be our first face to face with the medical team since the MRI that followed the seizure.

MRIs, while a great advance in diagnostics, is still a bit of an art with regards to interpretation.   Thus when one is undergoing a series of MRIs as John is, other doctors prefer to defer to the team that is doing the image reads over time. So for the intervening two plus weeks since the MRI was taken in California the local doctors have held off any analysis of the image.We did receive the observation from the Duke team that the image was "fine" but not much more detail.

When we arrived in North Carolina we found out that the John's doctor, Henry Friedman, was unavailable to meet, as he was going to be treated for kidney stones during our visit.  His staff assured us his absence had nothing to do with depression over Duke's early exist from the NCAA basketball tournament. :)

In his place the staff did a stellar job of addressing many of the side effects from John's treatment.  In addition they conveyed the encouraging news from the MRI that the tumor seems to be "less solid and possibly breaking down". Obviously this is a highly desirable . John will continue with his current treatment regimen as it seems to be having the desired effect.  We will return to Duke in mid-May for the next review. I will have another post at that time.

We did have some fun in March...

March has been very hectic between the seizure episode and the trip to Duke at the end of the month. I will have a post regarding the latter at some point as there was promising news.

However we started the month with an excellent time at Santa Clara University's Golden Circle Theatre Party aka GCTP.  It is a long-standing, annual event in the Valley.  This gathering is opportunity for alumni and friends of SCU to raise funds and make new friends for the school. A little on the history of the event and its hosts, the SCU Board of Fellows, can be found here: SCU Golden Circle History

It is a night of entertainment, dinner, and dancing held in downtown San Jose. Melanie and I have supported this event for several years, inviting friends and family to join us at our table. We had long planned that when John graduated from college one of the celebratory events would be having him host a table of his friends at GCTP.  With all of the uncertainty regarding his health we held off on acting on our plan. However, life itself is uncertain and we decided to push ahead, inspired by John's own example of perseverance in the face of adversity. It was a good choice.

Now I speak of the Board of Fellows as being the hosts of this event, but it is a mammoth undertaking and the yeoman's work is actually done by a small staff in the University Events office. Karrie, Mary, Blake and Lizzie, who keep this shop humming, had some help this past year from John Foster as, coincidentally, he works for them part-time! In fact, when we told him a couple of weeks before the party that he was going to host a table his first response was, "I can't. I am working the event!".  Now that is a dedicated employee!

The evening was a great success both for the Board's goal to "raise some funds, make some friends and have a good time doing so" and for our own group of friends and family. The evening started at the San Jose Center for the Performing Arts. There we were treated to a performance by Rock and Roll Hall of Fame 2014 inductees, Hall and Oates. They were preceded by a fine a Cappella group, Supertonic!, comprised of Santa Clara students. Check them out on YouTube.

The balance of the evening was spent at the Fairmont where we enjoyed an excellent dinner and attempted, some of us less successfully than others (cough, cough), some dancing to end the evening.

Here are some pictures from that night.

Pre-show at the CPA

Waiting for dessert!

Pre-show at the CPA

John's seizures Tuesday, March 11th

Many of you have heard that John experienced two seizures Tuesday night. The first was at his cousin Courtney's home in Pleasant Hill, where he stopped by to pick her up as they were to attend the Warriors game.

While there he experienced a focal motor seizure. He never lost consciousness but was not responsive. By the time the EMT team arrived he had somewhat recovered. He was transported to John Muir hospital in Walnut Creek for observation and evaluation.  While there he suffered a gran mal seizure.  The ER team responded with heavy doses of anti-seizure medication.

He had a CT scan which showed nothing not already known but he was admitted overnight as a precaution. Wednesday he had an MRI which was also fine. Specifically the doctors were looking for any signs of bleeding at the tumor site or anything significantly different than seen on his last MRI. Neither of these concerns were manifest.

Based on information taken from his medical history, specifically the fact that John had missed a dose of his anti-seizure medication on Sunday, suggested strongly to the doctors that John's maintenance dose of the medication is likely too low. The missed dose was sufficient to lower his overall load of  medication, essentially the minimum baseline of anti-seizure medication in his system sufficient to prevent a seizure, was no longer reached.  This level is different for everyone as each person metabolizes medication at a different rate.

He is now taking a higher dose on an ongoing basis and the doctors have recommended he have his baseline checked in about a week.

We are all very thankful this happened while he was with family who could attend to him, especially Frank and Courtney.

10 weeks post-recurrence - What is happening?

As reported in the December 2013 post, John's GBM recurred. He has undergone a change in treatment, enjoyed a wonderful Thanksgiving and Christmas with his family and has gotten two more MRIs, the latest being yesterday, February 24th aka Melanie's birthday....

Let me lead off with the health update. The good news is that the tumor appears stable since his MRI in January. As a result he will continue with his current course of treatment.  He still takes Avastin and Irinotecan every two weeks and mixes in carboplatin every fourth week. He has tolerated this treatment ok. It is tougher than the previous treatment on the appetite but generally he is back to eating normally by the third day after treatment. He is also pretty tired the first three days but bounces back by day four. 

The  MRI in January at Duke was, to quote the doctor, "in a gray zone" where a conclusive assessment regarding progression was not possible. He had another MRI yesterday, this time performed locally at Good Sam. We had a conference call with Dr. Friedman today and he said that "Unequivocally there has been no progression since January. The tumor at this time is stable."  We are relieved to hear that news but realize that each MRI could bring a change that requires a new course of treatment. Dr. Friedman has done an excellent job of keeping us apprised of the state of the art in treatment.  He likes to say he has "brigades of more defenders ready to move on this tumor". 

We are slated to go back to Duke March 24/25 for another MRI and treatment assessment. Also we will have more BBQ and, of all things, Polish food. During the last day of our visit in January we stumbled upon a storefront serving very delicious Polish food and some splendid trinkets.

John has had a busy two weeks.  He had one of his roommates, Andy Kelly, come down from Spokane and stay with him for a week. They ran around town, both San Jose and San Francisco, visiting another of the GU roommates, Brian Biggs, who is living in The City.

They even managed to time a visit to Lake Tahoe to snowboard when there actually was snow on the mountain.  

This past week Melanie's sister Missy, John's Godmother, paid us a visit. It is always fun when Missy is in town though it was much too short of a visit.

Two other bits of big news. We have added a new puppy, Penny,  to the household. She is nine weeks old and a corgi-beagle mix. She is very cute but we are going through the puppy training stage. She is learning to pee outside and  to leave the furniture alone. 

John will be going to Santa Clara's Golden Circle Theatre Party this year ( SCU Golden Circle Theatre Party).  Since the Fall he has been employed part time at SCU in the University Events office. As such he thought he would be working the event; instead he will be hosting a table of his friends. 

 

Between all the visits, treatments, staying on top of the new puppy, the Warriors and wondering how the Giants are going to do, we have been keeping busy.

We are looking ahead to the summer in hopes that we can again spend some time in Rhode Island and Connecticut with Melanie's family and perhaps persuade some of our California friends and family to join us.