Best gift

By Alicia

We did a video chat with mom this evening. She did say hi and at the end she said "I love you, Alicia".
Best ever gift.

Merry Christmas.

Reading

Not sure why the text didn't show up with the picture that I posted-but here are the words that go with the "reading" picture:)

Mom has a new "reader". I hope she doesn't mind. Lauren could be in there for hours reading:)

We have had a few good days. Mom was able to eat real food! She requested a panini for lunch and ate chicken cordon bleu, roasted potatoes and green beans for dinner!

Thank you for all the Christmas cards!
Sent from my iPhone

Reading

By Sheelagh

Update

By Sheelagh

Sorry it has been so long since I have updated. Finals week is over!! Yay!

Not much has changed with mom. She has a hard time with solid foods so she rarely eats anything harder to "chew" than oatmeal and scrambled eggs and even those she chews for forever--so most of her meals are drinkable.

I was feeding her the other night and I said "I have never seen anyone chew eggs as much as you!" And she laughed (laughing for her these days is her belly shaking) it was good to see that she is still able to understand us.
She talks even less now and rarely answers anything.

I still read her emails to her. Thank you all so much for not forgetting about her and for sending emails still.

Sent from my iPhone

Thanksgiving

By Graham

Beth and I actually had the time off and were able to go down to Sheelagh's for Thanksgiving and Lauren's birthday. We took mom an early Christmas present in the form of a handmade blown-glass ornament. Obviously we HAD to make a hat out of the tissue paper. While verbal communication is little to none, she sat there for several minutes tracing the sections of red with her finger and I think she really liked the ornament. 

Sheelagh organized a wonderful dinner (we supplied the mashed potatoes) and everyone was in need of stretchy pants. And the next day we partied even more with the celebration of my niece's birthday. 

Pictures from the Cruise

By Mike

I guess I'm a little surprised this hasn't been done already, but as many of you may know, in August this year, about 6 months after Charlotte's surgery and about 2 months after she was done with chemo and radiation treatments, Charlotte paid for her entire family to go on a cruise to Alaska.  We have a ton of pictures and some very neat memories.  Here are only a few of those pictures.

At this time, Charlotte was strong enough to stand and walk a little.  She enjoyed the food on the ship, although it didn't always stay down.  She didn't talk much, but you could converse with her.  She got to go whale watching and grandkid watching at the various ports-o-call.

Now, she is not able to stand any more and she does not converse hardly at all.  For everyone, especially her kids, this is the hardest part.  She is with us, but not really.

Enjoying some of the ship cuisine

Standing at a overlook in Skagway AK

Grandkid Watching by the river delta at Skagway

Looking at the sculpture near the port in Ketchikan AK

Admiring some totems in the clan house at the Totem Bight in Ketchikan

The family pic, taken the morning of the last day on the boat

Wheat Amongst the Tares

By Mike

Here is a picture I snapped of the basement. Alicia and the kids are in the middle of sorting through a box of loose papers. There was plenty of sorting like this looking for photos, journal entries, and other important papers mixed with old bills, newspaper articles, and advertisements. Just as Superman can fly, Alicia has near super powers when sorting. Most of the time, we just stood back and clapped as she amazed us with her sorting prowess.

There is yet plenty to do, but Alicia sorted through an amazing amount.

Camels are Ugly

By Mike

Another fun find we discovered amongst the boxes and boxes of loose unorganized papers was this photo of Charlotte on a camel from her trip to Egypt.

The End of an Era

By Mike

Two pictures to share - a before and after pic.

For any of you who have been inside of Charlotte's home, you know about the back corner next to the laundry.  For as long as I have known Charlotte, that corner contained this freezer.

Well - given the age and general condition, and noting the cost to ship something of this size across the country, it was time to remove the freezer and defrost it one more time.

So here is the "After" shot.  The doors open nicely and it's not so much of a squeeze to get back there.

A stack of sticks!

By Mike

There is no Internet at Charlotte's house. We were smart and had her phone and Internet turned off back in July when we determined Charlotte was going to live with Sheelagh - there was no sense in paying for something that wasn't going to be used. Fortunately, there is public wifi at the nearby library.

For the past several years, Charlotte has spent a great amount of time making hand-carved, unique walking sticks and wands. Some of here sticks are quite elaborate and very very neat! She collected a whole bunch of sticks of about the right shape and size then she would store them in piles around the house to dry and prep for carving.

Here is a picture of all the sticks we found stashed in the corners and closets throughout the house. Most of these haven't been touched; the bark is still on etc. some of these have had their bark stripped.

And to think this pile isn't even all of it. There are sticks in the outside sheds and a this does NOT include the sticks she has finished or was in the middle of working on. We're not sure what to do with those yet.

A Fun Find

By Mike

We've had some time to filter through some stuff. We've tossed a couple bags of expired food. We've dug up all the weeds in front of the basement window. Alicia has sifted through many boxes of paper looking for treasures among the trash. There is PLENTY of work here, so we are busy more than anything else - and believe me when I say this week is only the beginning.

Here is a fun little find from our efforts. This is Charlotte's ID when she was working as a bus driver for Murray District. As you can see, the badge was well worn from years of faithful service.

In the past now

By Mike

For the Thanksgiving break, we decided to ditch town and drive to Charlotte's house so we could winterized the house, clean up the yard, and maybe get rid of some of the unnecessary clutter around the house.

This was waiting for us when we arrived. It is an unfortunate reminder of Charlotte's radiation treatment. The yellow circles with the "X"s in them are the focal points to help direct the radiation.

We have no way of knowing how effective the radiation treatment was. But that is all in the past now.

Huffed and puffed and blew the trees down

By Sheelagh

So we had a exciting Sunday last week. We knew that extreme weather was on it way--which is pretty normal for this time of year. I think that we got the outer edges of a tornado that took out half of a middle school south of us and did some major damage to a town about 40 minutes southeast of us.
We lived in Kansas for two years but I have never seen anything quite like this storm. We saw trees going by the doors that walk out of our basement!
This picture is of our oldest getting some "man lessons":) we had about 3 whole trees down and a lot of limbs that still need to be cleared up. Too bad we don't have a fireplace--just a fire pit outside and it is waaaay too cold to enjoy that.

Mom is not talking these days and hardly touches her food. She still enjoys sprite though and I think would drink it all day if she could. She sleeps a lot and even when she is awake she isn't really awake.

Keep sending emails! We read emails everyday and I think that she is a little sad when there isn't anything to read.

The fun of midwest life

by Alicia

So, on Sunday, the midwest had some crazy weather. The tornado sirens went off.  Thankfully Sheelagh said Dave had just pulled into the garage and was able to help mom get to safety.  A tornado did touch down close to them, but they faired ok.  Just some broken trees to cut down.

As far as how Mom is doing.  She is bedridden.  She is still able to feed herself.  Mom has had severe confusion, not really aware of where she is.  Sheelagh said that a few days ago, she still said "I love you", but that's few and far between.  

She is still on steroids, not to help with swelling, but for a pain management.   We all wonder when her time will come.  Somedays you have the "why me" but then you pull up your boot straps, and count all the blessing you do have.  Mom, is still with us, and we have learned so much from her, and are still receiving lessons on patience, understanding and service

To lighten the mood.  Found a fun family photo.  This photo was most likely taken around the holidays.

.

It goes on

by Alicia

Unfortunately, the benefits of the steroid is starting to wane. Mom has not been able to get out of bed for over a week. Her legs and arms are becoming very frail. She has not complained about headaches, yet. Sheelagh was saying the other day, she complained to mom how hard it was to be a mom after a hard day. She leaned her head on mom and got a hug! I am very jealous.

Here is a pic of mom with a beautiful quilt her visiting teacher made her. Her hair looks different - don't freak out though. It was all sorts of crazy lengths and Sheelagh gave it a little buzz to even it up.

Happy Birthday!

By Sheelagh

We made it! Today mom turned 72. Here is a quick pic of her birthday lunch. I picked up sandwiches etc from Penn Station Subs and some freshly squeezed lemonade (mom does not like fountain lemonade--she always says it tastes like horses sweat, I am going to take her word on that one!)

Tomorrow night we will have her birthday dinner part 2.

Birthday wishes

By Sheelagh

Mom turns 72 next Thursday!
We celebrated with Alicia and Graham while they were both here and now are gearing up for birthday...the sequel.

I was asking her tonight what she wanted for her birthday. I asked her if she wanted "new garments and her kids to get along"--which is what she said for every birthday when we were younger....she laughed and said that sounded good--I reminded her that we already get along and she doesn't wear underwear:). We both had a good laugh at that one.
She did make another meal request. We will be having pulled pork ---with slaw of course, onion rings and strawberry rhubarb pie.
Sounds yummy:)
It is a good thing she doesn't make meal requests that often, we would have all gained 50 pounds by now.

Update 11/1

by alicia

Here is a pic of mom "playing computer". She is not able to really navigate her computer any more, but she will sit in front of it, scrolling her finger on the track pad "working" on something.
We have a new hospice aide now, and she is wonderful. She comes Monday thru Thursday and helps mom shower and get her out of bed. It is such a blessing to have a hard working and caring aide.
Next Thursday mom will be 72!

A Quiet Moment

By Mike

While Alicia was with Charlotte a couple weeks ago, she snapped this poignant photo. I saw it after downloading the pictures from her phone and this one stood out to me. I thought I would share it.

A Visit from Mike's Parents

By Mike

Earlier this week, my parents made a trip to visit Charlotte.  Dad had some business in town nearby and mom came along.  They then stopped by afterwards.  Sheelagh was at home to let them in.

Sheelagh said they were there for about 10 minutes or so.  Mom wrote me an email and noted:

We went up to Lafeyette yesterday so that your dad could interview a Senior at the high school there.  We found Sheilagh's & Dave's house and had a short visit with Charlotte.  Charlotte said she was eating better and keeps busy using the computer & talking to her Utah friends and family that call.  We brought her some flowers & a card.

It doesn't sound like it was much of a conversation . . . which isn't a surprise.  The steroids have helped a lot, but Charlotte hasn't been very talkative for quite a while.

So you think you can dance?

Last night as we were making our way from the bathroom to the bed we had a little dance off:)
(I usually walk backwards holding on to moms hands as she shuffles forward)

So I said alright mom 1-2 cha cha cha and with her next few shuffles she did a few cha chas :)

The last few days have been pretty good, she has gotten out of bed everyday. It has been a little too chilly to go outside for a walk but it is nice to have her back at the dinner table.

Sent from my iPhone

A crochet cape

This picture makes me smile because it looks like her "cape" is flying behind her:)
The last few days have been pretty good. As you can see she is out of bed. Saturday she came with us to the church and watched the kids practice their primary program. Sunday she wanted to come to church--It was a pretty eventful hour. Probably a little too much movement from the car to the chapel, she lost all of her breakfast and then some. She ended up going home after sacrament meeting.
Yesterday she was up and out of bed again and ate dinner with us at the table. This morning she opted to breakfast in bed:)
Everyday is different. We never know what we are going to get--it keeps us on our toes:)

Early to Mid-October Update

By Mike

I thought it a good idea to add a little narrative to the recent events in Charlotte's life followed by a current status report. Sorry if this runs a little long.

On Tuesday afternoon, the 8th of October, Alicia flew out to be with Charlotte for several days. To be honest, the reports we were getting from Sheelagh seemed to indicate that Charlotte was going downhill, seemingly near the end. When Alicia arrived on Wednesday morning, Charlotte was very weak and lethargic and Alicia described to me how Charlotte would pick at Alicia's clothes. Charlotte wasn't eating, nor was there any output. It seemed very grim.

Friday morning, Charlotte took a dose of steroids and showed little change all day. Graham drove down several hours to be there too.

By Saturday, Charlotte was much more awake, active, and eating. It was good for everyone to see her more active, but Alicia wondered to me if this was the "last burst" of energy before the end. Several weeks previous, Alicia found a list of symptoms that indicate how much time someone might have left with this sort of cancer. The exact process and indications are different for everyone, but there are some signs that tend to occur for most people. One of the symptoms is a state of alertness and interactivity only a few days before the end. Was this it?

As you can gather from the recent posts, Charlotte felt well enough to actually get out of bed and eat and output! They celebrated her birthday and enjoyed some time outside away from bed.

We're not sure exactly the cause of the turn around, save for the steroids she has taken. From the first dose, she had another each day and has gained strength enough to stay with us a while longer.

As of this past weekend, Charlotte felt well enough to go to church - although she didn't stay the whole time. Unfortunately, she became very nauseous and vomited before the meeting was over.

I've included a picture of Charlotte watching a movie in bed while Graham was there. I think they were watching "Unicorn City" at the time. I think it's safe to say Charlotte is surrounded by loved ones - even if no one in the picture gets the joke about "Warlocks of the Beach" (I had to explain it to Alicia).

Mom and Alicia

By Alicia

Thanks to my wonderful husband, I was able to go out and spend a week with mom.
This is the morning I flew back home. Mom felt well enough to get up and enjoy some time out of bed.

Mom's Early Birthday

By Graham

It probably helps if I attach the photo, too.

Re: Mom's Early Birthday

By Graham

I went down to visit mom again. We celebrated her birthday a bit early. She requested bread pudding which Sheelagh excellently made (and chocolate cake for those that didn't like bread pudding). It was great to see her again and spend some more time with her.

An Great Photo with a Big Smile

By Mike

I just got this photo today.  Many thanks to one of Charlotte's oldest and dearest friends, Gea.  Gea found this wonderful photo and sent it to me and I couldn't keep from sharing it.  What strikes me about this picture is Charlotte's happy and carefree aura.

Out for a stroll in Unicorn City

By Dave

After a week of Charlotte being confined to the bed, Sheelagh was able to capture this rare photo.  The three Mitchell girls went for a short stroll in the woods/hood and then sat on the porch swing for a spell.  It was a good day for Charlotte, energy-wise.  We celebrated Charlotte's birthday since both Alicia and Graham are here.  The day ended with everyone packed into Charlotte's room watching Unicorn City.  A low budget film about a group of role playing gamers.  

Hanging out

We are just hanging out with mom tonight.
Her oxygen levels were a little low , so she got hooked up with an oxygen machine today.

Murray School District Pinnacle Award

By Mike

I finally got a hold of a digital copy of this picture of Charlotte taken as part of receiving the Murray School District Pinnacle Award.  It was a very auspicious occasion to honor Charlotte's dedication and service with the district; and I can't think of anyone else who deserved it more.

 

 

A battle of wills

By Sheelagh

Mom needs to take an anti nausea pill twice a day and this morning she refused to take it...Alicia is here now so this morning was a battle of Mitchell girl wills. We are all ridiculously stubborn so it was kind of like the standoff at the OK corral:).
In the end mom won. She put the pill back into Alicia's hand and closed her fingers around it...cased closed.
Mom:1 Daughters:0

So we will have to grind it up and put it into some soft food...even up the score:)

Sent from my iPhone

She's got the mooooooves like....Liberace:)

By Sheelagh 

I was thumbing through my pictures and found this one I took a few weeks ago. I came home to find mom tinkering at the piano. She played around for about 30 minutes before she needed to lay back down. 

It is disheartening to think that just a few weeks ago she was up and moving around by herself. She is completely bedridden now although she agreed to try to sit in her wheelchair tomorrow to get some fresh air. I will try to remember to take a picture. 

http://m.youtube.com/watch?v=q9nO9Ro_kd4&desktop_uri=%2Fwatch%3Fv%3Dq9nO9Ro_kd4

On a funny note.  She doesn't talk very much anymore but the other day I was helping her get ready for the day and when I was putting her deodorant on she said "time to swab the deck!" --still makes me smile. I think that will be code in our family now for "whew! Better go put on some deodorant!":)

Sent from my iPhone

Let them eat cake!

By Sheelagh

Last night we had some friends over for dinner. We had a yummy fiesta with homemade flour tortillas and all the necessary yumminess...beans, zucchini's, meat, rice etc. (Growing up mom always made us homemade tortillas, we became so spoiled that there was a point that we wouldn't eat the store bought variety.) ANYWAY, I assumed that she just wasn't very hungry because she didn't eat anything, as is often the case lately--BUT I guess she just did not have an appetite for mexican cuisine. I brought her some dessert later that evening- our friend brought her famous coffee cake- and mom had no problem eating her cake! I guess she has earned the right to not even touch her dinner, but still get dessert :)

Sent from my iPhone

Nana's Manicure

By Dave

Grace painted her fingernails a pink color. I told her she looked like she was headed out to a Beatles concert which spurred a fun conversation about an actual Beatles concert that she attended in Portland with some of her girlfriends from her home ward.

FaceTime with the Black's

By Dave

Supplement by Mike:

Here's what it looked like on the other end.  Still amazing to me.  For this, I will say "Thank you Steve Jobs."

In bed

By Sheelagh

The last few days have brought a lot of changes in our routine. Starting on Friday mom has been unable to get out of bed. She can stand but not without a lot of assistance and cannot walk more than a few inches one way or the other --the upside is I get a big hug whenever we need to get her up and out of bed:)
We will be seeing a hospice aide everyday now so that I can have a little more help with her daily care.

She has difficulty reading but still enjoys having her emails read to her, please continue to send them!
Thank you all for your loving cards, emails, prayers and kind words:)

Amazing Sight to Share

By Mike

A month or so after Charlotte's surgery, she came to visit Alicia and the rest of us for several weeks. We sampled from some of the beautiful sites around the area. During one of these outings, we saw something which none of us had seen before known as a "sun dog" or parhelion. The parhelion we saw was nearly straight overhead and completely round. It was much larger than Charlotte nor I could get into a full frame on the camera, although we tried.

It was a very neat experience to share with Charlotte.

The pictures were taken with the camera very near to the ground pointing almost straight up and as wide angle as we could make it. You can see Charlotte's silhouette in the corner. This was taken June 15th.

Sleeping beauty

By Sheelagh

Mom spends a lot of her time sleeping these days. She gets a wake up call before I leave for my classes and I help her up to the bathroom and back to bed. Breakfast is always in bed now she is rarely feeling good enough to venture out to the kitchen or living room until late afternoon.
I usually set her up with a movie before I leave but more often than not she sleeps while I am gone. Today she slept through lunch which is happening more and more often.
On the upside she is not in any pain and from what we understand of this type of cancer she most likely will not ever be in much pain.



Sent from my iPhone

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