Best day ever

It's nearing the end of a long day, but we think you'll agree that our news is worth the wait! Mom spontaneously opened her beautiful eyes several times today, showed recognition, and even smiled in response to a funny family joke. Another sign of progress was her ability to follow commands, such as holding her left arm up or sticking out her tongue.  These small steps wear her out; you can see on her face just hard she's working.  We talk to her a lot about where she is and what progress she's made, always reminding her that she's one day closer to going home.

When we told her that Dad and Brian were on their way back to Grand Rapids, and that Dad was wearing her favorite red shirt of his, she smiled and then made the "oooh" sign with her mouth...so funny and precious!

She will stay in the hospital at least through the weekend and we'll continue to work on plans for the best rehabilitation facility for her continued recovery.

Slow 'n Steady

Thanks for checking back in with us.

Mom is making tiny steps toward waking up.  We've seen a few smiles today, especially when getting her teeth brushed and minty chapstick applied.  The nurses told the ICU doc that, "She likes to do more for her daughters than for us."

The EEG has shown no seizure activity, so the mass of electrodes were just removed -- Yay! This makes her head more comfy and moving her around easier. The plan is to get her up into the chair a few times today. They use a soft sling to lift her out of bed and into the chair...a nice floaty ride. She also needs to be stimulated in other ways so that she interacts more with the world; we talk a lot, move her arms and legs, and make sure she knows how strong she is and how much everyone loves her.

The doctors remain confident that she'll recover with time.  The problem is complex and difficult to understand:  "Aboulia" involves a disruption of communication among parts of the brain, and this includes her emotions and motivation. SO, in addition to the physical aspect of recovery, she needs to regain the will to act in various ways. That will come with healing and a lot of pushiness from us.

Dad and Brian are back in Glen Arbor, where Dad is getting his medical treatment.  He definitely misses Mom's comforting presence in the house and can't wait to get back to Grand Rapids tomorrow. We're researching rehab facilities in the Traverse City area, where she'll be able to get intense physical, occupational, and speech therapy -- all with the goal of getting Mom back home.

In the meantime, thanks to Uncle Glen, we have a boombox in the corner playing Chopin preludes.

Wednesday Morning

All is stable here.  A goal for today is for Mom to wake up more, and in the ICU it is important to maintain the normality of day and night cycles.  So, the blinds are up, and the sun is shining on her sweet face. She did open her eyes a few times this morning and looked at Brian for a good long while (how can you not?).

The staff here (where some time ago Mom worked as a young nurse) is friendly and definitely inspires confidence.  Still, we want to get the heck out of here. Our next step is a neurological rehab center -- likely in Traverse City.  We're hoping that will happen in the next few days.

A few minutes ago, Dad and Brian left to go Up North, as Dad needs to get back to his daily radiation therapy.  He is stoic and very tender with his bride.  It will be hard for him to be away.

Your posts, calls, emails, thoughts and prayers are really helpful.  Thank you!

Taking Time

It was a tremendous boost for Alyce/Mom to have conquered the long surgery yesterday, Her responsiveness after surgery, however, has not been good.  She opens her eyes and follows noises, but is not speaking at all.  She does not follow commands, but does seem to recognize some people, and has even been known to slyly smile when refusing to, for example, open her eyes for a nurse. Her right side is not moving.  It's been scary and upsetting, BUT we are very relieved to learn that the neurosurgeon believes her condition is temporary, and it is not due to a stroke.  There are several possible reasons for her slow "awakening" that have to do with the very large tumors he removed, the area in which he was working, and the duration of surgery.  

Everyone wants Mom to get out of the ICU as soon as possible, and it is likely she will need treatment in a rehab setting for a while.  We don't yet know the timing or location of any of this, but will share this with you as soon as we know. 

At least one of us is always with her, and she knows how much she's loved. We even caught her sweet smile when Dad sang "You are My Sunshine" to her. As always, we are strengthened by your support and share your messages with her -- thank you! 

Great news!

After more than 6 hours of surgery, Mom/Alyce is now in recovery and waking up.  She's amazing! Our hero, Dr. Elisevich, met with us and clearly described the surgery from start to finish. He is quite pleased with how things went and was able to remove over 90% of the large tumors. They are now watching to see how she responds and starts moving.  We'll get to see her within the next hour, and can't wait to see her sparkly eyes and smile.

She'll be spending the night in the intensive care unit and the goal is then to get her up and moving as soon as possible to prevent complications.  We don't know yet how long she'll be in the hospital, but will continue to share updates.

Our heartfelt thanks for your support and kind messages all day -- it really helped us through this long day.  Keep them coming!

Surgery update #2

At hour four, Mom is still stable in surgery.  Tumor removal continues...

Update from the Operating Room

Just received our first update, about two hours after surgery started.  Mom/Alyce is doing fine, and her vital signs are stable.  The surgeon anticipates his work taking about another four hours.  We are all together in a comfortable waiting room and feeling your support -- thank you!

Ready for surgery and surrounded by love

Mom is responding well to steroid therapy, which is doing its job in reducing swelling and allowing her to think a bit more clearly and communicate a little better. We had a nice, calm day.  A highlight was a visit from Dr. Elisevich, her neurosurgeon and our hero.  Mom positively lit up when she saw him, and she clearly melted his heart.  He is reassuring and confident about tomorrow's surgery.  Mom is on the schedule for approximately 9:15 a.m.  We'll have a strong, supportive group of family here for the day.  We treasure your thoughts and prayers and will let you all know when she is safely in recovery.  Thank you for loving Alyce Jean.  

Early trip to the hospital

Hello from Butterworth (Spectrum) Hospital in Grand Rapids.  We've had an eventful and scary couple of days.  While sitting at the kitchen table with Rich, Val, and Nancy on Thursday afternoon, Mom had a big seizure (her first).  Thankfully, we were all there with her and she didn't injure herself.  The ambulance arrived swiftly and drove Mom to Munson Hospital in Traverse City, where a CAT scan of her head showed that the swelling in her brain around the tumors has increased, and is likely to be the cause of the seizure.  We were so relieved to learn that she did not have a stroke and was not bleeding.  The decision was made to send her by ambulance to Butterworth Hospital, where her surgery is still scheduled for around 9:00 Monday AM on March 27.

She is safe, comfortable, and getting medicines to help prevent more seizures and decrease the brain swelling.  She is still sharing her beautiful smile with everyone who walks in the door, yet has much difficulty finding the words to express herself. She tries hard though!  We are all keeping a close eye on her, with the goal of keeping her healthy and as comfy as possible while in the hospital so that she can heal quickly after her surgery.

The other day, I stumbled upstairs for coffee, and Mom was already dressed (looking "spinorty" with lipstick and everything). I asked, "Oh! Are you going somewhere?"  And she answered, "Well, you never do know."  So, I had to take her out, of course.  We went to Light of Day Organics (on 72), where they had a tea tasting -- just like wine tasting, but you don't get loopy.  We learned a lot more about tea than I ever knew was possible and had a really nice time.

A letter from Alyce

This is Nancy, writing for Alyce.  Mom has always been a great correspondent. I think, if she could, she would be keeping up with her hand-written cards and notes to her dear friends and family.  So this letter is written as if she's speaking to you so you can get a feel for her life these days (she did OK it!).  

                                                                                                                      March 17, 2017

It is a cozy afternoon after a little snowstorm.  It’s been a different winter, not as severe as usual and not as much snow to shovel.  The lake has frozen over, thawed, frozen over again – weird!

I have this funny business going on in my head that makes it hard to express myself and makes me confused much of the time.  The tumor that the doctor removed (most of) three years ago has grown back and is causing these troubles in my thinking.  I don’t like it!  If we had a phone conversation recently, and I didn't say much, that's why.  I want to make sense again, and I want to have nice long chats with you again, so I am going to have surgery. 

My surgery will be on March 27 in Grand Rapids.  We all really love my surgeon, Dr. Elisevich.  The girls say he treats me as though I were his own mother or a beloved aunt.  I am a little scared about the surgery, but also anxious to get better, so that’s what we are going to do!  Brian is coming all the way from California, Val is coming again from New York, and of course Jeff will be there as well. Just like last time.  And we are all positive that, just like last time, I’ll be able to come home after just a few days. I’ve been doing exercises and building my strength in other ways to be in good shape for this surgery. 

In the meantime, I am doing my usual thing.  You know me, I like to be busy – always doing something.  I still enjoy reading – the newspaper every day, and I always have a novel going.  I keep up with housework and really like to keep everything tidy.  We joke that I’m always trying to take Rich’s plate or bowl before he’s done eating to put it in the dishwasher!  Grocery shopping is still one of my favorite activities, and I always watch for sales in the newspaper.  I have been working for some time now on a project looking at old photos and sorting them into boxes for each “kid.”  Fun!  Sometimes I am amazed at how much we have done and how many interesting places we have been.  So many terrific friends and relatives.  Rich and Nancy don’t let me get rid of anything, as they are both too sentimental.  One more thing I’ve done recently is finish the fringe on an afghan that I began when Jeff had his accident over 30 years ago. I’ll even admit that it’s beautiful!  

I still go to church and really enjoy it – I may have trouble saying sentences, but I can sing hymns with no problem. I have so many good, caring friends there.  I also have Companions, a women’s Bible study group, twice a month.  My sister-in-law and dear friend Elsie is just a few doors down, and we enjoy time together, too. 

Rich is being so attentive and sweet.  He watches me all the time and makes sure I’m safe and happy.  He always wants to hold my hand!   But I have to take care of him, too, because his myelofibrosis makes him “tippy” and tired sometimes, and he is also getting radiation for skin cancer on his nose.  Phew, too much! 

I would like to hear about you and your life as well.  I think about you and love you. Please be thinking about me on March 27. I appreciate your prayers and look forward to writing you myself soon!  

Rich and Alyce, July 2016