Notes and Details

According to her wishes Vivian was cremated.  Serge, Sarah, and I all had an opportunity to say our last goodbyes to our wife/mother. Our plans for the memorial service are coming together nicely.  There will be no lack of pictures and memories to share with friends and family.  A lot of people have reached out to us offering a shoulder to lean on, an ear to listen, an arm to help, and many words of encouragement, not to mention all the delicious food people have made. 

I have a couple of notes about the visitations and memorial service. 
1.  There is a kitchen/family room area at the funeral home with toys, couches, a TV with VCR/DVD available for families to use with their children. 
2.  Lory's Place will be at the visitation on Friday evening to provide support and activities for any children and/or students of Vivian's that may need an outlet for their grief. 

If more details come up I will be sure post those as well. 

Visitation and Memorial

We have set some dates and times for visiting with family and friends and a memorial service for Vivian.  Her obituary, visitation times, and an online memory book can be accessed at Starks & Menchinger's web page by clicking here.  The main information is listed below:

Visitations
Friday May 4, 2012:  5pm-8pm
Saturday May 5, 2012:  1:30pm-3:30pm

Memorial Service
Saturday May 5, 2012:  3:30pm-4pm

Memorial donations can be made to Lory's Place of Hospice at Home or to the Michigan Association of Retired School Personnel - Berrien County Chapter (MARSP-BCC).  Vivian and Serge have been long time supporters of Lory's Place as a resource for people (particularly children) to help deal with the grief of losing a loved one.  The MARSP-BCC will be awarding up to a $1000 college scholarship in Vivian's honor to a student studying Speech and Language Pathology.  All donations can be sent care of Starks & Menchinger Funeral Home.

Peace

In the presence of her family Vivian B. Schillio passed away today at 12:50pm EST.  There is a part of us missing, but we take comfort in her peace.  The outpouring of love from her friends and family is a testament to her kindness and generosity.

More information will come as visitation and memorial arrangements are finalized.

Hard To Be Human

While we are able to illicit some basic body language responses as we talk to her or when she hears certain noises, things are fading for Vivian.  She is entering the last stages of her battle with this disease.  Our job has been to keep Vivian as comfortable and pain free as possible, but it is becoming increasingly difficult.  We are stuck in a position where more medication may keep her more comfortable, but will quickly take more of her away.  At the same time, we're not so sure it would be a bad thing if she slipped away sooner than later.  It's proving difficult to be humane and human at the same time.  Fortunately we have been able to be together as a family and we believe she feels our love and takes comfort in our presence.

A Couple Projects

An old stained glass window from a church in Pennsylvania has been in Vivian's family for over 50 years got a new life when Serge finished up a project he'd been working on for a week.  It was cleaned and a new back-lighting box was custom built and wired to show it off.  Vivian was visibly delighted when it was relit for the first time with her father and two sisters present this past Sunday.  Serge is planning on researching its entire history, but Vivian's father believes it may be 150 years old.  It's roughly 4 feet wide and 4 feet tall.  My sister and I remember this particular piece of stained glass as a fixture in our grandparents house when we were young, and we're happy to see it back up and running again.

Vivian was also able to help out with one last craft project for her grandchildren.  With about four of us working together we were able to color Vivian's left hand purple (the color of pancreatic cancer awareness) with tempera paint to make hand prints on a few sheets of linen paper.  Each grandchild will also add his or her hand print to this sheet of paper.  Lastly we will add a photo of Vivian and that specific grandchild to the paper and frame them.  Each grandchild will have this as a personal reminder of their Nanny.

Visiting Vivian

Things continue to swing back and forth with Vivian.  Yesterday she did great with taking in fluids, today not so much again.  Overall, however, she is getting quite weak and completely lucid moments are few and far between.  We are all feeling the painful effects of slowing losing the woman we know.  

The list of family and visitors that have stopped by continues to grow - her father, sisters, brother-in-law, and niece have been here the past three weekends in one combination or another; Serge's parents, sister, nephew, and niece made it in last weekend; another niece stayed for a few days this past week and helped clean up and cooked for everyone; close friends have spent many hours with Vivian which has allowed Serge time to run errands, complete projects, or decompress with a couple buddies at the local FOP.  Sarah, John, and Rowan have been spending a majority of their time each week at the house to support the family while trying to balance their work responsibilities back in Lansing.  My wife, Sara, has done the lions share of house keeping and child rearing (she's still on a maternity leave from our second child, Vivian's granddaughter Lauren) allowing me to support my parents and grieve all at the same time. 

Thank you for all the stories and words of encouragement - they have been helpful for the family.

Back and Forth

Vivian had some of her worst moments in the past couple days and then has rebounded to show some strength.  From an entire day where she ate and drank almost nothing, to drinking 4 glasses of electrolytes and eating a piece of bologna and some fruit.  Yesterday she went over 7 hours without any morphine - something she hasn't been able to do in nearly 3 weeks.  She is still receiving pain medication with trans-dermal patches, but it was nice to have a good part of a day where she was chatting with people (real or imaginary) and wasn't constantly sleeping.  "Good" days like these tend to get your hopes up with thoughts of how she is possibly getting better... it's about all that's left to hold on to right now.  We know and understand the reality, but take comfort in seeing Vivian chuckle or smile when seeing a friend's face.

There have been many friends and family stopping by and helping out here and there, which has allowed Serge some time to run errands, finalize paperwork, and "putz around" as he calls it - things like building a ramp so its easy to get Vivian out on the deck for some sun, designing his own iPad stand so its easier for her to do FaceTime chats with Sarah and John in Lansing, and illuminating a large stained glass window that's been in the family for decades.  Ultimately it's good therapy.

Remember to keep visiting John's Flickr page for Vivian as new photos are constantly being updated.  There are currently over 500 photos! 

The Difference a Day Makes

The last two days have been like night and day.  Monday Vivian truly had a "bad" day - she didn't have much to drink or eat, seemed to be in a lot of pain, and had an extremely difficult time speaking or understanding conversation.  After a monster night of sleep (9 hours straight) and some modification to medication dosage and timing Vivian was able to have a "good" day today.  She was much more alert, participated in conversations, and even scolded Serge here and there.  There is still significant difficulty eating solid food, but she was able to stay much more hydrated today and managed to get some calories sucking down over half of a Frosty.  We were all pleased to see the change today and hope it sticks around for a while.

Pictures of Vivian

My brother-in-law, John, spent the weekend sorting through family archives and digitizing photos of Vivian with friends and family as well as her extensive travels with Serge. He uploaded a collection of images ranging from her old grade school photos to images from just a couple weeks ago when she was swimming with dolphins in Key West. There are hundreds more to upload (so check back frequently), but below is a slideshow that will automatically update as additional images are posted.

You can also view them directly on this Flickr website by clicking here. Right now there is no rhyme or reason to the sequence of the photos, other than it's in the order that they were scanned in. John will eventually be able to sort the photos into categories such as family, friends, etc so people can browse the images in different ways. If you have photos that you would like to contribute, feel free to email them to John at john@LMB.org and he'll get them posted to the site. If you have lots of images, shoot him an email and he'll send his address so you can mail him a disk.

5 Days Later

The goal of the two procedures that Vivian had done at the University of Chicago five days ago was to relieve pain and allow her some more time to be with her family.  Without the stents she likely would have passed away by now.  Her jaundice is hardly noticeable, so we know her liver is back doing what it should.  Her pain, however, has not subsided to the point she was hoping for.  Vivian has been doing a lot of resting the past two days and the moments of being completely present seem to be further apart and shorter in duration.  Solid foods are becoming more difficult to eat.  She clearly enjoys seeing and hearing her three grandchildren, giving Serge kisses, and seeing extended family members, as well as giving us small quips or eye rolls to express herself.  These are the very moments she wanted to have, and because of the procedures she gets to have them.  There are no regrets.  We know the time she has left is short, and we're grateful for every moment.

In-The-Sun Day

Thanks everyone for a great day of rest. Vivian had a rough start to the day with being in pain and feeling loopy, but finished relatively strong. She had a fantastic 3 hour nap outside in the sun today all wrapped up in a warm coat, sunglasses, and a shade umbrella.

When I left this evening she was eating soup on her own and complaining that Serge was pestering her about not eating enough - about as normal as it gets right about now!

Looking Better

Vivian's jaundice is noticeably decreased today, and she's been eating well considering how much sleeping she's done. There's still a good amount of pain being managed with medications. She slept for 7 hours last night with no complaints, so we know some of the pain is probably brought on more by anxiety than anything else. It seems to be a constant battle lately to make sure she gets enough meds to not be miserable but not too much to make her completely loopy. This afternoon Serge and I made our way to a local funeral home to start making arrangements for mom. She is staying involved in the decisions around this task as well, which feels morbid and reassuring all at the same time.

We want to make sure everyone is on the same page here - Vivian's cancer is not curable. All the measures we have taken lately, including hospice, have been purely to relieve pain and make her more comfortable. If the ERCP had not been successful her liver would have completely failed in a few days. It was a life-threatening situation. Now that her liver has been patched up there will be something else that creates a complication that may or may not be treatable. We know this and Vivian knows this. We're not trying to get anyone down, but to keep things realistic. Vivian wanted to try the ERCP again (after an initial failed attempt) to make sure she had a bit more time to tie up some loose ends. Fortunately she now has that time.

Everyone has been so wonderful, kind, and giving of their time and energy over the past week that it is hard for us to ask this of you. For the next four days (Th, F, Sa, Su) we are asking for a hiatus from visits and phone calls to the house. Serge and Vivian will be working through a lot of paperwork together and making some final decisions. We have a lot of family coming by this weekend as well who would like to have some time to visit with Vivian. If you need to get through to us please do so through my cell phone, my sister's cell phone, or my dad's cell phone. I will do my best to keep this blog updated so no one will be left in the dark as to her condition.  Please continue to leave comments and words of encouragement - the entire family loves seeing them!  Thanks and love to all.

A Day to Recover

Today has been a low-key quiet day of recovery. Vivian isn't feeling particularly awesome, but we weren't expecting anything significant in the first 2-3 days after the procedures. Our best indications of how well everything is working is when she regains a healthy appetite and the jaundice decreases. Her oncologist came by the house today to check up on the patient and discuss where we go from here. The big question we have right now is if she should try chemo again. The blockage in the liver (caused by the tumors) caused a lot of pressure and considerable pain. That's the whole reason we moved away from any direct treatment of the disease and leaned into palliative care. If we've taken care of the blockages and she starts feeling better then it may be possible to try to treat the disease. Will going on chemo again provide a better quality of life? I guess we wait to see how much better she's feeling in the near term and discuss the possibilities and probabilities. Her oncologist will be checking in next week as well to see how Viv is doing. On a different note, thanks to everyone who has been checking up on Vivian and the family and offering your help and support. She's not used to so many people dropping what they're doing to help her - she's often the person doing that. She is, however, handling it with heaps of gratitude.

Home and Happy

Vivian is home resting comfortably and there is an air of relaxation in the house. We know there are more trials before us, but for now there is relief in both the literal and figurative sense. Two stents were placed - one in the main bile duct of the liver and one in the pancreatic duct. Both were completely blocked and drainage was immediate from the pancreas. We should see the full effect of the stents and pressure relief in the next 72 hours. I will keep posting on the results and progress.

Today = Success

Wonderful news. Everything went great with the ERCP and nerve block. This is the best result we could have asked for. Now we wait to make sure her liver drains and everything is working as it should, but everyone (including Vivian) is in great spirits. We know that this is not a cure for a terminal disease, but it will hopefully allow us to all celebrate a little longer with someone we all know and love. She is excited to spend more time with friends and family. We will be returning home to St. Joe soon and she should be resting comfortably back in her owns house by this evening. I will continue to post daily to keep everyone on board. Thanks everyone.

In Progress...

Vivian is having two procedures at once. The first is the stent in the liver, the second will be a celiac nerve block. The goal of the second procedure, like that of the first, is to reduce the pain. She had this procedure last Friday as well, but we don't know if it helped any. Overall we know the relief will be temporary, but she was looking forward to taking "another swing at it" (her own words). Her resilience and desire to keep working at it inspires us all.

University of Chicago

We made our way over to the University of Chicago this morning so Vivian could have a procedure done to relieve some of her pain. The procedure is called an ERCP - they are going to try to put a stent into the common bile duct of her liver to help relieve pressure. It is an outpatient procedure that takes roughly an hour. This procedure was already tried once in St. Joseph unsuccessfully last Friday. She has already been taken back to be prepped, so we're hopeful we will know if everything went smoothly this time in short order. More to come as the day progresses.