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,