Important Picture, Dec 2010

By Mike

While browsing our photo library for a school assignment, I scrolled past this picture and thought it worthy of sharing. This is a picture of Charlotte holding her last grandchild born (so far). This was taken in South Carolina, where Charlotte flew out to be with Alicia for the birth. For the record, and as a testament to the kind of person Charlotte is, she was physically present for all of the births of her grandchildren regardless of where they were born - from coast to coast and anywhere in between. She was always there.

Hospice - A Blessing

By Alicia and Mike

All reports from Sheelagh about the hospice nurses and staff have been positive. Sheelagh says they are just wonderful. In some ways, she and I regret not calling hospice sooner. But finally going with hospice was a hard choice. We thought of hospice as if you were "giving up".

For mom to get hospice services, she had to get a "prescription" from her oncologist in Utah. That is, mom and we had to choose to stop taking the chemotherapy drugs. The drugs were the only treatment left for mom, and so we had to stop that treatment in order to start hospice treatment. Mike had a friend/coworker (Brad) who's wife was a hospice nurse and Mike sent him an email. Brad's wife said that sometimes families would wait too long, like, there would have been things the hospice nurse could have done to really help, but by the time the family called, it was too late.

This past week, hospice sent over a Chaplin to answer any spiritual questions or just talk. He asked if Sheelagh had "a faith" and if she needed to talk about it. Sheelagh told him that we were religious and ok. He was a very nice man, but a little hard to get to leave. He seemed to linger and finally left when they kids came home from school.

A good day

Today was a great day! Mom walked down to our creek. We had a fire and made s'mores. (Try them with potato chips!! Salty sweet-yum!) she was able to walk back (sometimes we drive her down and back)
After dinner she took her dishes to the sink and wiped the counter-something that has never happened.

The picture is of her stirring the rice pudding. We had a ward fiesta today and we brought rice--a lot of people brought a lot of rice. So rice pudding tonight and sweet and sour meatballs with rice tomorrow AND rice in the freezer for later....there was a lot of rice:)

What a difference a day makes

By Sheelagh

Today at 2:30, Cena the hospice admittance nurse came.  Like magic she snapped her fingers, made a phone call and by 7:00 tonight we will have a sliding chair that will slide/rotate in and out of the shower, a hospital bed for mom to use- I think that it will make it A LOT easier for her to get in and out of bed by herself, and a bedside tray table....for when she wants to lounge and take her meals in bed:)  We found out that through the hospice volunteers, she can get a massage, have a beautician come and cut her hair, have mani/pedis---even have someone come and play the harp for her!  (maybe we should decide that mom needs to hear some harp music conveniently on the same night as we have a dinner party!)

She was amazing, I wish that she was going to be our regular nurse.  We will meet mom's actual nurse on Monday who, for now, will come in weekly-- more often as needed.  She will have an aide to come in 1/week as well to help her with any personal needs, or just to gab (not that mom is very gabby), make her a sandwich, or do some light cleaning. 

She was able to sign all of her own forms, but I am  not really sure how much she understood.  She still struggles with time- she thought that Cena was joking with her when she said it was Friday, and one of the forms she dated as the month of October, and one as January. 

Thoughts while in Utah

By Graham

Growing up, I always thought of my mom as a superhero. 

When I fell on my first attempt at walking, who was always there to pick me up? Mom. As I learned to ride a bike and inevitably fell off, who was there to hold me as I cried due to a skinned knee/elbow? And with one tender kiss made the pain go away like magic? Mom. Throughout all the years of illness, colds, strep-throat, car-sickness, it never ceased to amaze me that she was always there and somehow never got sick herself. Even while holding down a full-time job, she always had time to take care of me and my sisters. 

My Mom. My Invincible Mom. There was one time after a soccer practice, she was showing me a passing technique. She tripped and ended up breaking her elbow, however, she jumped right up and it was a few days before she went to the doctor's to get her arm checked. That was really the only time I ever knew her to be sick/physically injured. Even Superman had Kryptonite....

My Mom. My Loving Mom. She could be as vicious as a momma bear protecting her cubs, yet could be so tender, nurturing, loving, caring in those moments as she held me in her arms as a child and sang me to sleep. Even when I was older and in a far-off country having trouble sleeping at nights, I asked her to record the songs she used to sing and send them to me. Those songs were ever so sweet (even though I was 19) and I could hear the love she put in them just as I remembered them when I was 5. 

My Mom. My Hopeful Mom. Wanting her children to do well in school and have a better life than she had. Wanting us to succeed in every endeavor. Making sure the homework was done, up and dressed for school, never late. My Mom, who was disappointed when I failed a class. Not because I wasn't smart enough, but because I had been lazy and didn't give 110% of my full potential. Seeing that disappointment hurt worse than failing the class. 

My Mom. My Always Busy Mom. Always with some purpose, whether it was yard work, visiting others in the neighborhood, helping people with family research, carving walking sticks, Harry Potter wands for the grandkids, gavels, painting woodland creatures on rocks, drawing, creating her own Christmas cards, the list goes on. Every moment had some purpose behind it. It was as if moving, doing something, is what kept her alive. 

In July I flew to Utah to be with my mom for a few weeks before leaving on our cruise. It was great to spend time with her. Living across the country, I only had the chance to go home for a Christmas here and there. This was really the first time since '05 to just be there without any outside distractions. It was obvious she needed someone there to help with daily tasks, cooking, getting to her appointments. It was also obvious what effects the cancer was having on her brain. My mom was always sharp as a tack, yet now she was having trouble with remembering small things. For me this was the hardest point to deal with. I had the fear that one morning she would wake up and see me cooking breakfast or reading in the living room and not know who I was or how I got into her house. 

Dealing with cancer is already a huge blow to our family. Dealing with brain cancer (especially since it is located in her frontal lobes) feels like a double-edged sword, almost as if she is suffering from Alzheimer's at the same time. 

I was able to drive down to Sheelagh's place last week and see Mom again. As Sheelagh has stated before, there are small glimpses of Moms old self: when she laughed at some jokes, showed concern for our long day of driving back to Michigan ahead of us, or when she got in a good quip in here and there during the conversation. Those are the small moments when my Superhero Mom shines through.

The Daily Grind

By Sheelagh

Here is a typical morning at the Evans house.  Dave and our oldest wake up early for Early morning seminary (I get to sleep in:) )I like to think that since I woke up with our kids when they were babies for about 12 years, it is Dave's turn to miss out on a little sleep!) This wake up time will get a little earlier in a few weeks when Swim Team starts their early morning swim session--I think that the saying is "Toes in the water at 5:25".  Fun.

I wake up the rest of the group a few hours later.   Get them brushed and fed and off to school. Make sure my mom is awake and OK- Lately she gets breakfast in bed...lucky!  If she is feeling "perky" I can get her in the bathroom and get her sheets and jammies into the wash before I leave to drop my youngest off at preschool and then head to my classes.  If not--I know that they will be waiting for me when I get home at lunch time:) 

Mom has what Dave has been calling the "10 second reset" she seems to forget what she is doing in the middle of doing it.  On Monday night she was giving the prayer in Family Home Evening-she started off great and strong and it was so good to hear her voice but then just stopped.  I thought it might be because she was feeling emotional....but no...I think that she just forgot what she was doing.  When we are all eating together she can pick up on our " action cues" and remember what she is supposed to be doing, but if she is alone or doing something solo, she forgets.  She sleeps most of the time now and if she isn't sleeping, she is lost in her own thoughts.  I would love to know what it is that she is thinking about.

In the mean time.  We are beginning to prepare as much as we can and have started going over the funeral service plans that she wrote out a few years ago.  It is a difficult task and one that I can only take in doses.

Some things never change

By Sheelagh

So, the other day I was working on a project in our basement. I had mom come down with me so we could keep each other company. She sat on the couch and napped as I worked:) I was here and there gathering my "tools" going up and down a step stool and I had put a screwdriver in my back pocket---yeah, I got busted. I totally got in trouble for having a screwdriver in my pocket. "Do you think it is a good idea to have that in your pocket?" No mom, I guess it isn't :)

Tonight as I was complaining about a canker I have had on my tongue (tmi--sorry) her response was "well, have you put salt on it?" --also the same advice she gave me yesterday. Nope. I haven't done that yet.

It is comforting that although so much as changed so much is still the same:)

She really does like to get emails. Please send her your love. She checks it all the time. She probably won't respond. I am not sure she remembers how to. The computer seems to baffle her most days--but she does read through emails.

Sent from my iPhone

Age of the Jetsons

By Mike

Cue the Jetsons theme music:

Sometimes it is amazing to simply look at the current technologies that we causally use with ease and then to remember what it used to be like. I am old enough to remember when a long distance phone call cost serious money.

We had a face to face conversation with Charlotte today. All the kids crowded around the laptop and had a chance to see and hear her. Charlotte didn't have much to say ( or perhaps it is better to say that she just didn't talk much ), yet it was good for us to see and interact with her.

This live video chat took place over 2,200 miles and at almost no cost. There was almost no set-up and it worked almost instantly. When I was a kid, this was science fiction! But for the kids, this isn't that impressive - they've been doing it for years.

Imagine what we will be able to do in another few decades?!  Even so, what a miracle and a blessing to have this available today!

Invincible

By Sheelagh

Growing up, I thought my mom was invincible.  She was some sort of super hero to me--I even thought that she was tall:)  There was nothing she couldn't do, and not knowing how to do something never stopped her from trying.
 She taught us how to cook, and how to play sports...she may still have a wicked hook shot! (we will have to get her out on the court this week now that the weather has cooled down a little.)  She made candy that was amazing and was something that we all looked forward to every holiday- although she gave away more than we ate....and guarded her chocolate hoard like a dragon--we knew that there would be trouble if we ate the candy...especially if it was a "perfect" one since she only ever gave us the "flawed" pieces--not that we complained, the "flawed" chocolates tasted just as good! 
She was a tireless example of unconditional love and service.
She could fix anything.  Her philosophy about fixing things was "It's already broken, you might as well take it apart and try to fix it."  She fixed radios, a laptop, a waffle iron......the list goes on and on.  I tried this out once.  I had a broken stereo.  I opened it up, looked inside and though, well, there is the inside of my stereo.....had no idea where to even start. I poked around for a little bit but in the end I bought a new one.
She raised the three of us on her own, she never got sick, and it seemed was never tired...although sometimes we would catch her "resting her eyes" :)  

It seemed that there was nothing that the four of us couldn't make it through together.  This cancer hit us all like a sucker punch.  We all figured she would meet her end pruning her apple tree when she was 95, or by falling off the roof cleaning her gutters at age 100. 
It has been very hard to slowly loose her.  There is so much about her that I already miss, even when she is sitting next to me in the room.  My invincible mom is already gone and I miss her so much.  I am now left with wondering if I told her I loved her enough when that was something I knew that she understood, did I let her know just how much she meant to me and my family.  As corny as it sounds this experience has made me want to hug my kids a little tighter, love them a little more.  Take every chance I have to tell my loved ones how much they mean to me.

She gets confused much easier now.  She will forget things that just happened, and many conversations get repeated. Just now she is telling me about an email that Alicia sent her, although we talked about it not 10 minutes ago.  The last few days she has spent more time in bed.  Starting conversations with her is difficult.  We have begun the paper work to start hospice care.   They will be coming next week for an evaluation meeting.  It all is still surreal to me.  Like a very long bad dream that I want to wake up from.

For those of you who want to get in touch with her, phone conversations are difficult for her.  They seem to take a lot of energy.  The best way to tell her that you love her is with a letter in the mail (you can contact me directly for my address) or by sending an email to her.  She may not email back, she sometimes forgets how to work her computer or gets lost in thought.

Fun to Watch

By Dave

Last night Charlotte was laughing out loud (LOL literally). The reason: slapstick comedy on the Disney Channel's kid show, Austin and Allie. The room was too dark to get a good, candid photo but this is not the first time we've caught her in the act of laughing while watching the Disney Channel. Hopefully we can record a moment to share with all of you soon.

Progressive Memory Loss

Originally posted as a comment to the Glioblastoma Aggressive Brain Cancer post which describes some of the symptoms associated with Charlotte's cancer.  Dave's observations seemed like they should be a full post.

Comment by Dave

The progressive memory loss is getting pretty bad. Yesterday (Sunday) at the dinner table Charlotte informed us that it was Tuesday. When we politely corrected her she became very annoyed and insisted it was Tuesday! The whole table went quiet. We let it go. I talked to her later that night about the incident and she closed her eyes and kind of hung her head in what looked almost like shame. I quickly changed the subject because the last thing I wanted to do was hurt her feelings. 

She closes her eyes, hangs her head, or turns the other way in what appears to be an act of defiance mixed with confusion whenever we ask her something that requires a semi-complex response. 

The one thing she is still very quick to do is move to action when one of our kids starts crying. She'll appear in a room on the other side of the house in seconds if there seems to be trouble. She's also very quick to correct or remind our kids to be careful if she thinks they are running too fast or playing too rough (usually done very quietly, almost under her breath).

I've definitely noticed all three of the above mentioned symptoms of Glioblastoma: progressive memory loss, change in personality and neurological deficit. It was about a week ago that she surprised Sheelagh and I while we were watching a movie. She came downstairs unexpectedly and insisted that we had snuck in the house like teenagers. However, we had just finished assembling a table with her in the living room only a few minutes beforehand. That was when it really sunk in for me that she was sick. I tried to hold back tears but my emotions were too close to the surface. 

It's hard to see this previously very powerful woman in such a confused state, but its been nice to spend some time with her after the surgery and I think it has been good for the kids to see some of the realities of mortality.

John Purdue Room photo

This photo was supposed to load with the last one. Sheelagh and Charlotte enjoying some lunch during the third quarter at the Purdue game on Saturday, Sep 7th. Don't worry we're not trying to convert Charlotte over to Boilermaker nation. :)

John Purdue Club and Laughs with Graham

By Dave

One of our academic advisors had some extra tickets to the Purdue football game vs Indiana State (20-16 Purdue). It was a great way to watch a game. Nice, air conditioned room, and leather seats while the folks in the stands endured 85 degree temps and high humidity. We made it home with a few hours remaining before Graham and Beth stopped by on their way to Cincinnati. Charlotte and I watched the Buckeye game vs San Diego State (42-7 Ohio State) and then we all just sat around and laughed as Graham cracked one hilarious joke after another.

Our New Normal

By Sheelagh

 

We have been home for about 3 1/2 weeks now.  We came home from the cruise to a new house that needed unpacking and the start of school for the kids and me.  Needless to say, it was a little crazy at our house for a week or so.

We had a few laughs the other day.  We were talking about obituaries, and the wording that people use,  "Beloved Matriarch" among the choice words.  Then it was decided that we should use that as her nick name...but it would need to be shortened...to "BM".  Even mom chuckled at this one.  Growing up, "BM" was code word for "poop"-- mom always hated "slang potty words."  A good "BM" could solve nearly all of our problems...have a headache? feel sluggish? hungry? sad? bored? got a bad grade? nothing that a trip to the bathroom couldn't solve. :)

Mom is doing well.  She has good days and bad.  We still see glimpses of the "old mom" and those are always bitter sweet.   She is a lot slower these days.  It takes her a long time to get moving in the morning, and afternoon....and evening.   She shuffles more than she walks and we joke that if she would wear socks around more often, she may be able to generate some electricity--if only we could harness the power in her shuffle. :)

Thanksgiving 2012

By Mike

Here is a picture from Charlotte's visit with us for Thanksgiving 2012 - about 4 months before surgery. We took her to a very nice beachside park about an hour north of us. Alicia says it is a little upsetting to realize that her tumor was probably there and growing in this picture (taken Nov. 24th 2012).

After the Surgery

By Mike

Charlotte was with her children when she came out of surgery.  She had to remain in the hospital for two nights for observation and recovery.  Due to her otherwise good health and strong body, she healed quickly and was anxious to get home.

Alicia, Sheelagh, and Graham stayed at their childhood home for the first time together in over a decade - maybe two.  They spent their time cleaning and preparing the house for Charlotte's return.  Between rotating "shifts" at the hospital with Charlotte, preparing and cleaning the house, contacting insurance companies, and running errands, their time was consumed and they were exhausted.

Alicia described being overwhelmed by the love and support of friends and neighbors willing to provide whatever assistance they could to help Charlotte in her hour of need.

Here is a family photo a few days after Charlotte got home (taken March 9th, 2013):

About the Surgery

By Mike

After a few phone calls with Charlotte regarding her perpetual headache, I (Mike) called my nurse mom who is my go-to person for most medical questions.  Mom encouraged Alicia and I to do whatever we could to get Charlotte to the hospital based on our description of the symptoms.  We called Charlotte's good friend Julianna to go and take Charlotte to the hospital.

It was late that night that we got a call back that there was a tumor in Charlotte's brain and that the doctor felt that surgery could not wait.  Awful news!  This made for a very long night as Alicia began the process of arranging travel and she and I called Sheelagh and Graham.

The next morning well before dawn, Alicia was on the road to the airport.  Her travel was fortunately uneventful and she arrived at the hospital before Charlotte went in for surgery.  Graham and Sheelagh arrived shortly afterwards.

The neurosurgeon completed the procedure successfully and reported that the majority of the tumor had been removed . . . but . . . but unfortunately, he had confirmed that the tumor had begun to spread like the roots of a weed - bits that were unsafe or too dangerous for him to remove.

This was very hard news to take.

Here is a picture of Charlotte after surgery (taken March 7th, 2013):

A Delightful Discovery

By Alicia

I did a little looking around today and discovered a delightful old photo of mom.  I couldn't tell you the story about this pic, but this is mom with her best friend Gea in Holland.  This would have been before mom was married.

Mom is standing on the right side.

Glioblastoma, Aggressive Brain Cancer

Details from wikipedia

Glioblastoma multiforme (GBM), WHO classification name "glioblastoma", is the most common and most aggressive malignant primary brain tumor in humans, involving glial cells and accounting for 52% of all functional tissue brain tumor cases and 20% of all intracranial tumors.

Treatment can involve chemotherapy, radiation and surgery. Median survival with standard-of-care radiation and chemotherapy with temozolomide is 15 months. Median survival without treatment is 4½ months. Surgery is controversial because no randomized controlled trials have ever been done.

Signs and symptoms

Although common symptoms of the disease include seizure, nausea and vomiting, headache, and hemiparesis, the single most prevalent symptom is a progressive memory, personality, or neurological deficit due to temporal and frontal lobe involvement. The kind of symptoms produced depends highly on the location of the tumor, more so than on its pathological properties. The tumor can start producing symptoms quickly, but occasionally is an asymptomatic condition until it reaches an enormous size.

Prognosis

The median survival time from the time of diagnosis without any treatment is 3 months, but with treatment survival of 1–2 years is common. Increasing age (> 60 years of age) carries a worse prognostic risk. Death is usually due to cerebral edema or increased intracranial pressure.

A Journal entry when it started

By Alicia

Tuesday I spoke with my mom. Mom also complained of a Headache for a week. She just wasn't right and seemed confused. I told Sheelagh and she spoke with her and we both felt something was wrong. After calling her friends we got them to get her to the hospital. Her friends mentioned she seemed off at church. 

We all figured it was a mini stroke.  After a cat scan we were informed it was a tumor in her right frontal lobe.   At about midnight I called my siblings. And we all headed to our respective airports around 3:30 am

I was able to get in by 9 and see her before they took her into surgery.  The tumor was the size of a lemon. 

Surgery went fine. The surgeon came out and told us that she would need chemo and radiation. The worst was hearing the average life span was only 12-18 months.  

Thursday we spoke with the oncologist and her outlook seemed less terrible.  But it depends on the patient and how the tumor reacts. It's a glioblastoma grade 4. 

Still in absolute shock and just overwhelmed with what is happening and the love and support from everyone.

This is where it all began . . .

By Alicia

This is where it all began.

Previous to this, my daughter called mom to ask about a bird she saw in our backyard.  Mike suggested calling Nana because she is the family birder.  Miriam spoke with Nana for about 40 minutes or so and the whole time, Nana was confused about who she was talking to.

I called mom later and she described a terrible headache that wouldn't go away.  I encouraged her to go to the doctor.  Here is the email she sent back.

----- Forwarded Message -----
From: Char Mitchell
ent: Tuesday, March 5, 2013 2:36 PM
Subject: Doctor

I am home now.  I had a shot at the base of my skull it has three different medications in it.
1.a short acting anesthetic agent, similar to a what a dentist uses.  2nd, an anesthetic agent lasting about 6 hour. and the 3rd is the cortisone which will be the medication offering the best result, hopefully the cure  In about 6 hour the site of the injection may be more painful than before the injection procedure.
I have a survey I need to fill out and mail to Dr. Baker.
1. pain before the injection from zero to 10  (extreme pain
2. pain one hour after the injection from zero to 10 extreme pain.
3. Pain one day after the injection from zero to 10 (extreme pain)
If it doens't get better, than I need to return to his office for a follow up.

Hope this shot helps me.  It was either a shot or to take  3Ibuprofen 3  times a day. or (600 mg) a day.  That's a lot of meds into the stomach.

Anyway, i'll let you all know at the end of the week, how is is going for me.

Love you

Mom