Online "Guestbook"

Please feel free, if you haven't done so already, to leave a comment for/about my dad here.

Save the Date

We're planning a celebration of my father's life on Sunday, February 12 at the Grand Haven Community Center (421 Columbus Avenue) in Grand Haven, MI....probably from 2-4pm.  We may have a meal together and then share stories or memories of him.

In the meantime, if you want to plan something to say or if you want to dig up some photos, letters, or artifacts and scan, email, or snail mail them to me, you're welcome to do so. It'd be nice to get a good variety of artifacts; all of my photos betray my father's affinity for incredibly intelligent, adorable, half-Asian children. :)

Sad news

My dad passed away at about 12:20am. Victor was able to get into town at 3pm, and Rosalyn got here at 10:30 or 11pm or so. I was grateful that the whole family was together.

I'll keep you posted on arrangements. Thanks for all of your prayers and love.

Seizures?

I received a phone call from my dad's neurologist's office saying that my dad might be having seizures.

I had called yesterday to report an increase in my dad's tremors. The neurologist, my mom, and I had talked about this last Wednesday when we had the neurologist appointment, and the neurologist increased the intensity of my dad's deep brain stimulator.

I had really just started noticing this change last Tuesday, when we moved him to hospice. Every once in a while (maybe every 10 to 40 minutes), my dad would get a whole-body tremor . . . well, in his arms and legs. He usually had been resting or sleeping, but his eyes would fly open and he would look sort of scared or surprised or stricken for a little while (less than a minute) and then his body would relax again. My mom said he did that very regularly -- every ten minutes or so -- that first Tuesday night. I had thought it might be related to adjusting to the new catheter, especially because he had complained of pain in that region. That was a week ago. When we had the neurologist appointment last Wednesday, he said my dad could be having seizures, but it would be pretty difficult to tell. They seemed to die down a little bit after that, so I thought the deep brain stimulator had fixed it.

However, yesterday the episodes seemed to pick up again. Tonight I visited my dad around dinnertime, and in the hour that I was there, my dad had three or four of those episodes. I had called last night to describe what I was seeing, despite the adjustment to the deep brain stimulator, and this morning I had a message saying that this sounded like seizure activity. It's still kind of hard to tell because he has Parkinson's, but these episodes are pretty different from what I've seen before with his tremor.

I don't think my dad ate or drank too much today, either.

My dad didn't eat or drink anything today. He wasn't able to be coaxed to open his mouth for his lunchtime meds, though he managed to take his evening medications and chew on a couple of ice cubes. Ugh.

Visitors and Rest

Shirley and Pat

My dad has been resting a lot since he arrived at the Munson Hospice House. He has also had several visitors. Doug and Mary came to visit last Wednesday, on the 25th. I took my dad to an appointment at the neurologist that day, after they visited. Although the nurse helped me transfer him into the car from the Hospice House, I had to transfer him out of my car and then back into it at the doctor's office. That was horrendously difficult this time; he isn't able to support himself at all anymore, I think. Wednesday was probably the last time I'll try to move him on my own.

Marilyn and Pat

Thursday, he had four friends visit: Pat, Shirley, (another) Pat, and Marilyn. They're old friends of my father's from his neighborhood and from college, and I know my dad was thrilled to see them. They brought some photos to show my dad, especially some where my dad looked very much like my brother. On Thursday night, I think, or perhaps it was Friday night, my dad's friend from work, Phil, came to visit. He stayed for a nice long visit, and he also provided some really kind-hearted, useful advice. Thanks to all of you for coming up in the snow to visit!

Phil

There has been a pretty noticeable physical change since my dad moved to the Munson Hospice House. Although his sleep has ebbed and flowed over the course of these past several months, he has definitely been sleeping more. More noticeably, though, has been his change in appetite. He was still eating pretty hearty meals before moving to hospice, but now he just takes a little bit of soup. He hasn't been drinking much, either, though he still likes to chew on some ice cubes. He's still taking pretty much the same medication he was taking before, except that he isn't taking the blood thinners anymore and he IS taking some pain medication. The day he arrived, he began using a catheter, and he complained of some pain associated with that. (He hadn't really been complaining of pain until this point.) My father also has experienced some decreased responsiveness; he doesn't seem to try to talk anymore, and I haven't really seem him smile or laugh in a while, either.

The volunteers and nurses and aids are really nice. The daughter of one of the volunteers came to say hi and cheer my dad up, and another volunteer brought in a beautiful British Golden Retriever for some pet (no pun intended) therapy. My mom is still there with him pretty much all of the time, and I've gone to see him almost every day. I've been reading some John Shelby Spong to him, which I know he loves. He has at least been staying awake for it, and reading has at least been therapeutic for me.

Settled in

My dad left Birchwood today after he finished his lunch. It was pretty sad; it's funny how attached you can get to people after just a few months. They were helpful to my dad and really nice to us. My dad's childhood friends, Doug and Mary, have also been helpful. They helped my mom and me transport my dad's belongings. More to come soon! His birthday post and this one are both placeholders. Tomorrow my dad has a follow-up appointment with his neurologist here. Thursday some of his other childhood/college buddies will visit. More soon!

BIRTHDAY!

clockwise from back: Randy, Marie, Ann

On Saturday we had a fun party with family and friends. My brother and sister were able to be there, as well as some of our family friends from Cadillac: Ann, Randy, and Marie.Some of his closest friends from little league to high school to college also came to celebrate my dad's big day.
In addition, one of his exchange students was able to find a ride up to Traverse City from the kindness in Laura's heart. She drove some of the exchange students up to do some fun winter activities so that Dimitar was also able to celebrate with my family, as well.

Mary, Ed, and Doug

The party was awesome. It started at around 12:30pm, and we went blowing past the 4pm finish time to about 6pm. My dad was alert and responsive the entire time. It was really fun to be near people who have known him from different times in his life because I got to hear a lot of stories. For example, my dad played a lot of baseball with the neighbor kids; their team was the "Delaware Punchies." Somehow they ended up playing ball against a prison team, and they got their butts whooped (figuratively, not literally). My dad was amazingly responsive to the stories -- he smiled or laughed at all the right times or nodded his head if someone asked if he remembered the story. There was also a story about a Chinese fire drill. I guess my dad used to drive a little Simca in high school, and at a stoplight he said, "Hey, let's do a Chinese fire drill!" The guys all ran around the car and got back into their regular spots, the light turned green, but the car didn't move; no one was in the driver's seat! One of the guys had to get out and drive the car over to my dad's house, where they saw him sitting on the front stoop laughing his fool head off. I guess the stoplight had been really close to my dad's house, so he had played a prank and had run all the way home.

Today, on his actual birthday, Ed, Mary, and Doug stopped by to celebrate. Ed visited in the morning, and Doug and Mary came a little later. My dad also had a lot of cards and messages (thank you, everyone!) and he was alert the whole time!

In the afternoon we also had a meeting at the Munson Hospice House and all decided that my dad will move there tomorrow.

Birthday Party Invitation: Saturday, January 21st, 12 - 4pm

This is a friendly reminder of my dad's 67th birthday party this Saturday, January 21st.

What: Sherm's 67th birthday party

Where: Birchwood  (map) "Resident Lounge" 

@ the front door, punch in the code 0112* (the month, the year, and star) 

when you get to the nurses' station, the Resident Lounge is to the right.

When: Saturday, January 21st, 12pm - 4pm (come and go as you need to)

My sister will be flying in and arriving at 3:30, so I'm going to extend the party a little to 4pm or so. We'll have a party sub, some snacks, cake, and ice cream. There's no need for gifts; it'll be great if my dad can just be surrounded by adoring fans. :) He might fall asleep at some point for a nap, but I hope we can all enjoy each other's company and swap stories, anyway.

Call, text, or email if you have questions or need directions or anything: 231.750.6906 / elrobins@gmail.com

Back @ Birchwood

My dad was discharged this morning from Munson and returned to Birchwood via a swanky ambulance ride. (Birchwood's transportation service was booked.)

He spent the majority of this past weekend sleeping. My mom had to wake him up for his meals, which he eventually ate. He would sort of fall asleep during the meal, sometimes. Today, after he was discharged from the hospital at about 11:30am, he slept until almost 3pm, when we fed him a little soup. He did have old high school and college friends, Doug and Mary, stop by for a really nice visit. They filled in some great stories about my dad's life before I knew him, and it was fun to hear those. Doug was having trouble remembering the names of my dad's two English Springer Spaniels. He remembered one was "Barney" from the Barney Miller show, but he couldn't remember the name of the other dog. I said it was Wilbur, and when my dad woke up we tried to ask him. If you ask me, I think I heard him say "Wilbur" in response . . .

 Much of today was spent discussing the possibility of hospice. My mom and I toured the Munson Hospice House yesterday, and it's a beautiful facility. My family and I are trying to decide whether to stay this last week at Birchwood for a final treatment of chemotherapy or whether to move him to hospice this week. I think that my dad improved a little under the chemo last time, but the CT scan from the hospital on Friday said that there hasn't been much of a change in the size of his tumor. The oncologist said that if we didn't want to go with hospice this week, the he would recommend it after this final round of chemo.

It's been tough, and it's hard not to be able to ask my dad what he wants. He's looking a little more uncomfortable now. His nose has been really stuffed up. He has been receiving saline treatments to try to clear the blockage, but he's having trouble making the conscious effort to blow his nose, so that when he speaks he sounds extremely nasally and difficult to understand. He has started breathing through his mouth a little more, which I think is good because it helps him get the oxygen he needs, but it also has the side effect of making him look like a pretty sick man. I wonder so much about what he's thinking when he opens his eyes and looks around, and I really wish that when he spoke, it was loudly enough for me to understand what he's saying. I think that not being able to communicate has been the most difficult thing about all of this.

In the hospital, I mentioned my dad's birthday on the 23rd and how I'd like a party in Traverse City and a party in Grand Haven. My family has decided that because of my dad's condition, we'll just have one party here in Traverse City. I apologize to everyone who lives downstate because I know my dad would love to go to a service at C3 Exchange (he definitely lived and breathed for that organization), but it sounds too risky. From what the doctor said, moving him around too much might cause the blood clot in his leg to dislodge, which would be a pretty quick end for my dad. The doctor at the hospital had also said that passing away on your way to see your friends might not be such a bad way to go, but I think that comment sort of gave my family cold feet.

The doctor did say that for most patients with brain cancer, the cause of death will usually be either a blood clot somewhere or swelling in the brain. Eventually the swelling will expand so that it looks for the only way out of the skull: the opening through which the spinal cord travels. At that point, it's difficult for the heart to get the signal to continue beating. The doctor also said the swelling is probably what is causing my dad to be so sleepy because it's limiting the functionality of his brain; eventually he may slip into a coma. This was all hard news to hear, but I do appreciate the ability to let that information sink in.

So again, you are all invited:

What: Sherm's 67th birthday party

When: Saturday, January 21, Noon-3pm

Where: Birchwood, 2950 LaFranier Rd., Traverse City, MI 49686

We'll have sandwiches or pizza or something and some cake and ice cream. No need for gifts or anything; your presence is wonderful. Let me know if you'd like to attend: 231.750.6906 or elrobins@gmail.com or simply post a comment on the blog here.

Blood clot

Stupid Friday the 13th...I shouldn't have made that crappy "ominous" joke yesterday. My dad had an appointment with the medical oncologist today. We decided to go through one more round of chemo, starting Monday. Afterwards we'll get another CT scan to assess the situation. My mom, again, brought up the swelling in his left angle. He's actually had this swelling since November, I'd say. I also feel like I brought it up every time I saw a doctor, but no one seemed concerned or ordered an ultrasound today. I feel upset about that, but perhaps it's my fault for not making a bigger deal of it.

At any rate, my dad went back to Birchwood after the oncologist, in time to catch a visitor! John worked with my dad in Cadillac AND in Muskegon. It's pretty cool that he was able to stop by for a visit, despite the snow. At 4:30pm my dad returned to the hospital for the ultrasound, and it was immediately determined that my dad has a sizable clot in his left leg. He has been admitted to the hospital (Munson), where my mom and I are currently helping with dinner. He's getting some blood thinners. I guess it's common to get clots if you have cancer, but the thinning medication can really cause problems with excessive bleeding if he happens to injure himself. I'm not sure how long he'll be here, but of course I'll keep you posted.

Birthday Plans

Thank you all for your patience! I'm thinking that we'll have a small party here in Traverse City on Saturday, January 21st, and then another party in Grand Haven on Sunday, January 22nd. I know my dad would really enjoy a service at C3, so I'll try to get him there for the service and then maybe a little gathering afterward. I'm still ironing out the details, but I know many of you are waiting for news. I'll post details once I have some...perhaps tomorrow or Saturday.

My dad also has an appointment with his oncologist (the cancer doctor) tomorrow, Friday, January 13th. (Ominous, I know.) We'll discuss chemo and whether we'll continue treatment and also the possibility of Hospice. My dad has a follow-up appointment with his radiation oncologist to see how radiation worked, but that appointment isn't until March, which feels like lightyears away.

We've got a little blizzard a-brewin' up here; I hope everyone stays safe and warm!

New Plans for a New Year

I hope you all had a happy and safe new year! Thank you very much to my Aunt Ann and her son Randy for making the drive from Cadillac to visit my dad on New Year's Eve. I wish I could have been there, but I know it meant a lot to my dad. You have been such longtime family friends and supporters!

On New Year's Eve, Chad and I stopped by with a bottle of champagne to celebrate with my dad at around 8:30 or 9pm, but my dad had just finished a bath and was put into bed when we arrived. He fell asleep within minutes of getting into bed so we didn't get to crack open the champagne, but it felt good to be together on New Year's Eve, anyway. On New Year's Day, my Aunt Oi and Uncle Liem came by my house and showed me how to make a delicious Vietnamese dish called "bahn cuon." My mom brought some to my dad for dinner, and he ate it all. Yippee!

In this new year, my family is faced with a couple of decisions. The Medicare coverage of my dad's stay at Birchwood will end on January 19, so we have to decide what to do after that. Hospice is covered under my dad's insurance, so I my dad and I met with an admissions coordinator from Hospice on Friday. For me there has always been such a stigma around Hospice, and I'm worried my dad will also "give up" if he knows Hospice is working with him. He fell asleep during the meeting, almost as soon as the woman from admissions introduced herself. I was wondering if that's the only way my dad can cope with this idea. I don't know. I know that when my grandmother and my great aunt moved to Muskegon to be closer to our family so my dad could help them, they were not at all themselves in an unfamiliar town surrounded by unfamiliar neighbors and no friends. I've often thought about that, and now that experience seems especially poignant. I do know that I can offer more help to my father here, and I know he has so many good friends who are willing to travel to see him, but I'm definitely concerned about taking him away from his environment and his friends. Hospice could come to visit him at a nursing facility or at my home (or his home, if we chose that), but the most important thing to me is that my dad is where he wants to be. I've tried asking him on a couple of occasions, but even if he has been answering my previous questions with a nod or shake of the the head, he doesn't respond when I ask, "Would you like to stay in Traverse City or would you like to return to Muskegon?" I'll try asking again, but if any of you have experiences that you'd like to share or any direction or advice, I'd gladly listen.

With this January will also come my dad's 67th birthday. His joke is that his "birthdate is a poker straight," which means his birthday is exactly 3 weeks from today, on the 23rd. I was thinking it might be nice to have a birthday party, and I would be willing to drive him to Muskegon or Grand Haven for a Saturday or Sunday. I have two questions, then: (1) Is there interest for this? and (2) If so, would anyone like to help me plan/coordinate something?

 All righty, that's all for now. Talk to you soon!