May 17

Dear Friends and Family,

Dad passed late last night, May 17.

Mom, Hunter, Miles, Robbie, and I, as well as a loving stream of family / friend supports have stationed ourselves at the house for the past four days. Tuesday and Wednesday were two of the most difficult days any of us has faced. Dad was in extreme discomfort from Wednesday morning until Thursday night. He struggled for over 48 hours, moaning in pain. Thursday evening, we found the appropriate medicine to ease his discomfort.

From Thursday evening on, dad remained in a deep sleep until his passing. He was far more comfortable once he reached this place of deep rest, with his breathing falling more and more shallow. On Friday afternoon, his breathing was very labored. The hospice nurses and doctors who so generously stationed themselves around our house indicated that he could pass at any time. We were as prepared as we could have been, and relieved that dad was in a place of comfort. Last night, we sat together around the living room where dad was sleeping. We each made our way to bed. When I awoke at 5am to give him a bolus of his medication, I found that he wasn’t breathing. I gently approached mom (sleeping next to dad in a blow-up bed) and let her know. She replied that she had been there for his last breaths – from her report they were peaceful and easy. We are grateful that he reached a place of ease in his transition.

We will have the memorial service at our house on Sunday, May 25 in the early afternoon. I’ll post more details when we work through them. For now, mom, Hunter, Miles, Robbie, Andy, Kelly, Anna, and I are sharing the afternoon together.

With love,

May 2

Dear Friends and Family, 

 I am constantly struck with how fast dad’s tumor grows. Two days ago, dad was off-balanced and lacked coordination but was still able to walk around the house. Yesterday morning, he was unable to leave his bed without hands-on assistance to get him from bed to wheelchair. It took me a significant amount of time just to get him to sit upright, and even longer to have him plant his feet on the ground. Three months ago, when he was in the wheelchair, he could transition relatively quickly. Now, he often doesn’t hear the cues you offer him, and is often too exhausted to move. This happened virtually overnight. 

Furthermore, dad was totally impulsive yesterday. After over an hour of transitioning him from bed to wheelchair to chair, dad had no energy to describe his wants and needs. He stared blankly into my eyes for minutes at a time, communicating nothing. I sat next to him, asking him yes or no questions. When I walked away for a moment, he started motivating to stand – something he shouldn’t do without assistance at this point. I ran over to him, asking him what he wanted, but getting no information from him. Dad would sit back for a few minutes, and then make moves to stand up again and again. To my knowledge, he had no reason to do this. I think he may have been responding to impulsive cues from his brain telling him to stand/sit/stand/sit/stand/sit. Each day is so different and so much more challenging than the last. It’s so difficult to anticipate where he will be when he wakes up in the morning, and what he will bring into each day. 

Yesterday, there was no way to communicate with him, and he was unsafe without constant and close supervision. I left the house for work after Shingo came to the house. We both were struck by the sudden change in dad’s state, and how impossible it was to deduce what dad was seeking out. Dad continued to attempt standing up and down and up and down throughout the rest of the afternoon, until he collapsed into our love seat in exhaustion. 

Reflecting on this experience from yesterday, I am going to show dad our video today. The window of comprehension and conversation is closing (if not closed). If you’ve waited until the last minute to send your thoughtful, loving videos to dad, now is the time! Miles gets into California (!) today, and we will watch the film this afternoon. 

Thank you, dear friends, for the effort and support you’ve already expressed. If I could insert one piece of advice for these videos, I would remember that dad’s form of brain cancer is terminal, and try as he might, he will not be able to “beat this”. Editing your loving messages has been rewarding, warm, and fulfilling. Thank you so much for sending these expressions of support. We will treasure these notes for the rest of our lives. 

 With love, Mikaela

April 30

Dear Friends and Family, 

It has taken me some time to muster up the energy to post an update here. In short, things aren’t going so well. Dad sleeps most of every day. Sometime in the past few weeks, he has moved from the sunroom (where he used to doze and read throughout the day) back into the bedroom. His exhaustion is visible in the time he spends sleeping, as well as the time you spend with him when he’s awake. 

When we help him into the living room, it is usually for meals and coffee, making it a twice-a-day occurrence. He now needs hands-on assistance to move around: from car to wheelchair, from bed to kitchen. Though mom, Carol, and I agree that a wheelchair would be the safest way for him to get around, he’s holding tight to his freedom from walking around – as precarious, wobbly, and harmful as it may be. I believe he reasonably sees the move back to the wheelchair as a permanent transition.

How do I describe dad’s presence when he’s awake? In the past I’ve used words like “foggy” to portray the experience of dad as the tumor has grown back. He still feels that way, the only difference is the degree to which the fog descends. I’ve started to imagine what the tumor’s doing inside of dad’s brain. In a lot of ways, dad is worse each day, which makes sense when you imagine the tumor growing into different parts of the brain. One day, something – maybe re-developed motor control of the left side post surgery – is simply absent. 

Dad’s much quieter now, and when he speaks it is with a raspy voice. I’m not sure what might explain the raspy voice – maybe that it’s straining to do the very act of speaking these days. He still manages to put in requests for coffee with ease – some things never change!

The downward trend continues despite two rounds of chemotherapy, and an additional chemotherapy (Avastin) treatment that we started last Friday. The experience of taking dad to the Avastin treatment is worthy of description: the treatment is IV, so mom, dad, and I went into PAMF for the transfusion. The Transfusion Area of Radiation Oncology was something like you’d imagine if you were to think of the space where people get chemotherapy. Up until this point, dad has taken his chemotherapy via pill, so we’ve been fortunate enough to dodge the Transfusion Area of PAMF. The room is huge, with small areas sectioned off for each patient chair + a chair for his/her caregiver. This space functions as a space for people to sit/sleep through their various forms of IV chemotherapy treatment. Dad, mom, and I sat there for the four hours it took for dad to receive his additional Avastin treatment. I found the experience depressing, but peaceful and relaxed. Dad and I shared some easy, relaxed time together, though he slept through most of the treatment. By around 2:00 in the afternoon, dad and I were on our way out of the hospital. 

After Avastin, I drove dad to Peet’s for a celebratory coffee – he loves these. It’s both an excuse to grab some extra coffee and a way to commemorate moving through another hoop in his illness. It was very rainy outside, and dad was already too exhausted to move around safely without the help of a wheelchair. I asked him to stay inside while I grabbed his drink (large whole milk latte with whip cream and chocolate – viva la vida). When I got back into the car, dad said, “Oh, I’m so glad you’re here. I need you to find my coffee, I don’t know where it is.” Confused, I handed him his coffee, which resolved the confusion. From this small interaction, it’s more clear to me how fuzzy dad’s perception of the world is. I don’t think he has much of an awareness of time, and I’ve noticed that he is struggling to keep track of conversations. 

Mom and I see that dad needs 24/7 help, and are straining to organize the extra support. I’m worried about mom: she’s sick right now and in full survival mode. We are so, so grateful for the stream of visitors who have helped cover the times we’re unable to handle ourselves. Danny is a staple at the house, as are Carol, Shingo, and Curt. 

Miles will get home on Friday. I breathe a huge sigh of relief just thinking about his return. The past few months have felt like years! Maybe his presence will ease some aspect of this situation. 

Thank you to all those who sent in videos and photos to my email. I plan to share these with dad when both Hunter and Miles are in town. 

With gratitude,

April 16

Dear friends and family, 

Today we learned that the tumor is growing back. Mom, dad, and I met with Dr. Colocci this afternoon, and she confirmed our thoughts of recurrence. As I’ve mentioned in earlier posts, dad’s accumulated exhaustion attributed to the six weeks of radiation and chemotherapy has not improved for weeks, despite encouraging words from dad’s team that a revival of energy would come about around six weeks post treatment. 

I remind myself each day to refrain from holding expectations of dad, so as to protect myself from his disengagement and emotional absence. For the past few weeks, I’ve expected him to sleep all day and speak monosyllabically – if at all! Up until the last few weeks this has worked out well for me – I’m never disappointed and I feel prepared for the worst. But recently my seemingly bottomed-out expectations have not prepared me for dad’s physical and mental state. He struggles to understand what I was saying throughout the day, even with sustained eye contact and repetition. He has trouble taking his pills. He sleeps in doctor’s appointments. He stumbles all the time. When I reflect after our time together, I see that he’s worse than before. 

Mom and I have talked about this a lot the past few weeks. She and I saw that something wasn’t right, and she immediately called to make an appointment with our oncologist. We both felt that recurrence was a possibility. 

Today we received the results from dad’s MRI. From the words of Dr. Colocci, the team of oncologists met this morning to review dad’s MRI. From the meeting, it was clear to all that the MRI exhibited “significant inflammation indicative of tumor growth.” Colocci emphasized how striking the tumor’s growth was, noting how this was relatively fast recurrence compared to the “average” glioblastoma progression. 

We will start Avastin (, an IV drug that slows the growth of new blood vessels, specifically around the site of the tumor. Around 60% of GBM patients respond well to Avastin, slowing the growth of the tumor for six months on average. We will start the bi-monthly treatment, as well as the continuation of dad’s chemotherapy as soon as it passes through insurance. 

From the appointment with Colocci, I took away what I had feared: dad’s tumor is growing particularly aggressively, placing him (so far) on the left tail in GBM’s bell curve. Recurrence after 4 months post diagnosis. Though I had the suspicion that the tumor was growing back even before we received the news from the MRI results, the appointment today dealt me an additional blow. Dr. Colocci’s delivery of the news – the degree and significance of the tumor’s growth – was more than I had prepared for. 

Community, the days would be much more difficult without your words of love and encouragement. If there is hope in this situation, it comes from the understanding that our family – nuclear, extended, and created – will carry each of us through this. From my end, I miss my brothers and ache for their return from school post finals. It feels incomplete to move through today’s news without all of us here to hold each other up. Mom and I are doing the best we can, but some fortification will be welcomed with a sigh of relief. 

Goodnight, all. 

April 13

Hello, all!

The last week has been a tender balance of observation and action. Mom and I have witnessed dad’s growing exhaustion and fogginess in the past week. We didn’t exactly know what to make of it, as there’s a certain degree of exhaustion that’s to be expected following radiation and chemotherapy. Dad finished his treatment on February 27, so this puts us at a solid six weeks post radiation. Dad’s radiation oncologist and radiologist predicted that dad would experience a peak in his energy by six weeks post treatment. We are not witnessing an apex of any sort. Rather, there is a continual decline each day, week, month that passes. 

Take this morning for example: dad woke up around 9am, ate a bagel, drank some coffee, and headed back to sleep. When I went into his bedroom to check in on him, I had to ask him three times over to take his medicine. I was a few feet away from him each time, but he was unable to track my words and content. When I got him to sit up to take his medicine, the process of taking his pills took over five minutes. This is a stark change from previous mornings, as usually dad’s self-sufficient in some of the habitual things like drinking coffee and taking pills. 

Mom, dad, and I scheduled a meeting with dad’s radiation oncologist last Thursday. Mom and I were concerned about dad’s state, and wanted to check in with Dr. Colocci about the symptoms we’re witnessing. Dr. Colocci echoed our concerns about dad, and indicated that it would be a good idea to schedule an MRI to determine whether the tumor is growing back again. According to Dr. Colocci, dad’s symptoms (exhaustion, increased time sleeping, poor motor control, and left side neglect) are what recurrence looks like. Dad will have an MRI tomorrow afternoon, but we expect to see some growth in dad’s tumor. If there is growth, we will start additional treatment via Palo Alto Medical Foundation and Stanford. (Remember dad’s near participation in the vaccine trial at Stanford? Dad has the necessary mutation to participate in the trial, so dad will be able to participate – in the event of recurrence.)

The way I see it, dad responds really well to chemotherapy. Fortunately, dad will continue to take chemotherapy for the rest of his life. I’d expect we will witness a minor lull each month, corresponding to the five days of chemotherapy. This could be guesswork, but mom and I definitely observed some improvements two weeks ago when dad was taking his chemo. 

With any GBM patient, time is not on our side. From my perspective, there is a narrowing of activities that dad can comfortably partake in. Fortunately, dad’s easy to please: a constant stream of full coffee cups and a space heater make him one content man. To all those who are able – now might be as good a time as any to come over for a visit. 

My gallant mother is just finishing up our taxes for the year. She deserves a standing ovation! Dad has always done our taxes, and it’s a miracle that mom was able to work through dad’s system to produce her first round of taxes, and especially considering the circumstances. 

Mom and I send our gratitude to you all for reaching out to us this week. It really, really made a difference for the two of us.

With love,

April 8

Hello, all – 

The team’s morale has recuperated a bit since the previous entry. Mom and dad spent the previous weekend in Half Moon Bay, sitting on the beach together, eating some great food (French, and sushi), and celebrating their 31st anniversary. Mom came back noticeably soothed and refreshed. She, dad, and, Hunter, and I lived in Half Moon Bay for the first four years of family life before we (plus a newborn Miles) moved over the hill to our current Atherton home. Half Moon Bay is a historic spot – home to their early years, the ocean, and good surf. It was really good to see mom in such revived spirits when she and dad came home on Sunday. 

As for dad, it’s difficult for me to get a grip on how he’s doing emotionally. Compared to mom and I, dad seems amazingly stable. Never do I hear him complain of his situation or his day. True to form, dad was not much different in spirit than when he left on Friday. One important thing I’d like to note is that it appears that dad’s having an easier time with the circumstances than mom or I. His monosyllabic report of the weekend was that the trip was “good. Highlight – good food.” There you have it! 

On my end, Robbie, Gavin, and I moved into our new Berkeley home on Tuesday. Tuesday was California’s rainiest day of the year, but we persisted and our home is coming together nicely. Since Tuesday evening, I’ve been sick with the flu. It’s taken me out of commission until just about today. I’ve spent the past few days over here, getting things assembled and organized. Considering how exhausted, sick, and negative I felt last week, I’m doing much better. I will spend about half of my time close to my parent’s house. I work in Palo Alto, and am currently participating in a yoga teacher training in Menlo Park. This keeps me very close to home at least 4 days each week. 

Dad is still very foggy – uncoordinated and easily tired. He stumbles regularly, and routinely neglects his left side as he’s walking around (bashing around into doors, counters, chairs, etc.). I’m doing my best to accept whatever he brings to the day, though usually it’s limited to a long list of urgent demands. I rarely see my dad through the fog he currently resides in. Mom will speak with dad’s oncologist tomorrow about the likelihood that the tumor has started to grow back. We both have a sneaking suspicion that it’s begun to. 

Mom and I are working on finding ways to feel supported by the community. I’m realizing that there’s actually very little that can be done to change the situation, but I truly appreciate hearing from all those who are following my updates. I find it’s easy to slip into feeling very, very isolated while all this is happening. It’s good to be reminded of supporters, even on the best of days. 

Thank you for listening. 

With love,


March 26

Greetings from a sinking ship, 

Dad found out the true numbers today: patients with GBM live on average a year. As my previous posts have indicated, things are on a gentle downward slope. Mom, dad, and I are struggling, though the dogs are getting many long walks as a result of these sadnesses. Any extra hands on deck would be much appreciated. 

With thanks, 

Mikaela and Margee

March 25

Hello all, 

Lots of the same over here – dad’s energy has plateaued with small ups and downs each day. I can usually tell how he’s doing from how he behaves in the morning – it’s a relatively up day when dad doesn’t stumble, spill, or trip, or if he’s talkative and engaging. It’s a down day when he sleeps through until 9am, stumbles while getting to the bathroom, or drifts off to sleep throughout the morning. The plateau – regardless of high or low – looks like this: slurred speech, dragged left foot, confusion (“good morning, Hunter” when Hunter is in Boston, or the same question asked on repeat), New York Times left outside the gate until I go fetch it, quiet house, and a lack of dad’s presence despite the physical space he occupies. I spend every morning with him, as well as a large part of each day, but when I was driving him to lunch on Friday afternoon, it felt like I hadn’t really engaged with him in weeks. 

Dad’s taken a new approach with communicating how he’s doing. Now he’s using an academic rating scale (A – F) to let us know how he’s doing. A = no noticeable impairment, B = slight impairment, C = requires explicit attention to manage, D = one (or more) incident wherein he fails to manage effectively, F = requiring constant care and attention.

Today was more of a down day. Dad woke up before me, but spent a good hour in the bathroom (he tends to get cozy wherever he lands, and feels no need to change locations most of the time). I woke up to a batch of coffee (irregular, as I’m usually the one to make it each morning), and dad soon confirmed with me about an upcoming appointment with his Oncologist. He forgot what day and what time the appointment was, despite my continued efforts to remind him. 

I guess this is what you call chemo brain? A general fogginess and pervasive confusion of what’s what. Anyways, he went back into his (formerly Hunter’s) room for a nap while I went on a run (training for the marathon – let me know if there are any others who’d like to hop on the growing bandwagon! San Francisco Marathon’s Race day is July 27, with marathon, half marathon, and 10K options). 

When I came back, dad was eager to join in on my day’s plans, which consisted of a trip to Burlingame for an appointment and lunch with Robbie and I’s soon-to-be-roommate, Gavin. Dad spent the early afternoon in the Burlingame Library, and took a fall while he was there, which automatically ranked his day at a D. He was noticeably shaken and quiet, though he brought the fall to my attention right away – a significant improvement from last week where he fell twice before noting it just before bed. 

At lunch with Gavin, dad was as quick and intellectual as ever. Dad and I were shaken, but the lunch itself was soothing and good for all three of us. From there, dad and I picked up a treat from Peet’s: one large whole milk mocha with whip cream (“somewhere between half and half and butter, I think”). We chatted on the ride home, and he headed to sleep shortly after we got back. From what dad says, his experience is one of exhaustion – though not so simply described as being tired – and fogginess. He’s often gazing into space and zoned out. In all my memory, Dad has been present and engaged. I can’t remember a single time where he just drifted out of a conversation. These days, he’s regularly taken out of the present space and into somewhere out of touch. 

Mom, dad, and I are here in the living room now passing time. Despite having spent all day with dad, I’m missing him. 

We see dad’s oncologist, Dr. Colocci tomorrow to prepare for the second phase of dad’s chemotherapy. 

Wishing warmth and support to you all –  


March 18

It’s 4pm and I’m sitting here at the Palo Alto Medical Foundation Urgent Care facility. 

Dad woke up with a very painful headache around noon. When he mentioned it to Hunter at 2:30pm, we immediately took him into Urgent Care. Until this point, dad has complained of pain only twice since his discharge. Once after a 4 mile walk, and once after he fell and hit his head last week. His pain today was located on the right side of his forehead, and moved down his right cheek as the day progressed. He labeled it as a 8-9+ level of pain on the universal pain scale from 1-10. I don’t recall him at a 9 once since he was diagnosed in December. Does it need to be said? I’m concerned. Dad is currently feeling nauseous and vomited a few moments ago. 

The Urgent Care team spoke with Dr. Schiffner, dad’s radiation oncologist, who recommended they give dad 4mg of decadron (steroid) ASAP. From the sound of it, Dr. Schiffner interprets dad’s intense headache as a response to brain swelling. Perhaps the careful balance of decreasing steroid and keeping his brain inflammation down has gone out of whack. His steroid dosage has increased for the moment, and we will decrease the dosage more slowly next time (how to decrease more slowly I’m not sure.. We’ve been at 2mg for 2 weeks now, and before that we were at 4mg for a good week). Something to keep in mind is a note from Schiffner: He mentioned that dad will ideally go off the steroid, but the fact that he’s on it now does not mean anything’s wrong. 

Now at 4:30, dad’s pain is at a 7/8, and he’s in a restive sleep. Light snoring and twitching – the usual. 

At 5:40, the Urgent Care doctor says we’re okay to head home. We are now working on discharge – Dad’s “grooving with that plan” (his words). 

The last few days have not been the best for dad. He’s wholly exhausted, and has been spending most days sleeping. He fell twice on Sunday. When he fell for the first time in the bathroom, he didn’t mention it to us until later that evening. When he fell the second time, he was on his way to bed for the evening. Unfortunately he cut his left arm pretty bad, and was bleeding. I doctored his cut, and tucked him into bed. 

Monday morning, mom, dad, and Hunter headed to UCSF for a second opinion with the UCSF neurology oncology department. I was unable to make it to this appointment due to a work commitment, but will relay the information that was passed my way. The short of it: we won’t be fiddling with dad’s treatment at the moment, as he is responding well to the current treatment path. Upon recurrence, we will seek out additional treatments. From the sound of it, why meddle with the treatment course if it’s working? 

Dad spent the rest of Monday afternoon sleeping. Hunter and I went on a warm and sunny hike, and spent the time processing all that’s going on. When we got home, dad was still sleeping. Though he spent the day in bed, he said he was “in for the night” – aka no dinner for him. 

Moving with the flow, we’re resting and hoping for more energy and less pain in the upcoming days. 

March 15

Hi all, 

Mom, dad, Hunter, and I just wrapped up watching The Great Mouse Detective this evening. Hunter, home from Boston for Spring Break, bought home the idea that we should revisit dad’s most favorite movie from when we were growing up. For all those who haven’t seen this masterpiece, it was just as fun today as it was 10 years ago. It was also a huge improvement from dad’s rather dry choices of films.

Hunter brought a lot of energy into the house from Boston. Mom, dad, and I are so, so happy he’s here for a visit. When he was here last (January), dad was still in the hospital post surgery. Though we’ve been in touch with Hunter, I can only imagine the shock and surprise he encountered in his initial visit with dad. If I were to look at dad from Hunter’s eyes, I’d notice his mobility (he was entirely wheelchair bound when Hunter was last here), lucidity, big belly, hair loss (from the chemo), swollen face (also from the chemo), exhaustion, decreased energy, decreased agitation (due to reduced steroid doses), and overall contentedness (dad’s happy to drink coffee and read the paper for most of the day). 

We met with Dr. Schiffner on Friday for an interpretation of dad’s most recent MRI. Though this is a *very* preliminary test (most tests are conducted 6-8 weeks after finishing radiation, but dad’s was performed 4 weeks after because of tentative interest in a clinical trial), the tumor had relatively less inflammation than prior to initiating treatment. This is good news for now: some GBM patients have tumors that barrel through the radiation and grow, others have tumors that show up in different places in the brain. Dad’s inflammation is reduced, and it’s likely that the inflammation will be further reduced 6 weeks from now.

With respect to the recurring alternative / additional treatment predicament: we have a consultation with UCSF on Monday where we will learn about the additional treatments UCSF has to offer. 

Dad’s general state is precarious these days. After his MRI on Thursday, dad and Danny headed to UCSF to drop off the MRI CDs. On his way to reception, dad fell and hit his head. In addition to this incident, I witness him losing his equilibrium frequently. Dad, Lyle (one of our dogs), and I went on a walk around the neighborhood yesterday, and he struggled to walk in a straight line. Dr. Schiffner explained that dad’s reduced coordination may be explained by post-radiation fatigue. We hope that dad’s sense of balance and energy will recover in three to four weeks. 

Other highlights: I found a 3 month old cucumber in our pantry from an incomplete organization post grocery. I’ll save you the trouble of conducting this experiment on your own: 3 month old cucumbers turn orange-yellow and the rank smell spreads through the entire house. Though neither mom nor dad noticed the smell, the house is happier with it disposed of. 

Spirits are calm and positive.