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