merry christmas

Merry Christmas everyone!!!
Unfortunately Jasper and I managed to get a nasty cold, so we had to cancel/delay our Christmas plans.
However we are making the best of it and I am not totally unprepared to do a nice Christmas here.

What a day, this afternoon the snow started coming down like crazy.
(as always click on the pics to see full size)
coming down today!


Pics from the other day

Jasper having snow fun

Jasper and Aiden tubing

Jasper and Aiden riding the snowboard sled together

More Snow

We last night we got 6-12" of snow. It's snowing now and the forecast calls for more. I've never seen this much snow here.
It really makes me miss Minnesota, I lived in the St. Paul Minneapolis area for almost two years and loved it there.


me bundled up.


Rosemary and Snow. (last night)




From today!

snow

We have been getting a lot of snow.
The headline of the local paper read something to the effect of "Fun and Troublesome" which I think stated it rather well.
I have been avoiding driving as much as possible, and Jasper has made an effort to stay in and warm. He did have an outing into the snow the other day though, which concluded with cuddling and hot cocoa. These pictures are from the first snowy day.

Happy Thanksgiving

Some days it's harder to find things to be thankful for.
Still, there are undeniable things in my life I can't help but be thankful for.
The support given by friends and family(Pagliacci included) through all that my family went through this year. We couldn't have made it through without all of you.
What I'm most thankful for though is that in the short time Elise had on this earth, I got to spend a nice chunk knowing and loving her, my life is better for knowing her. Also, for Jasper, who is my little smiling beacon through the hardest times. In him is so much of his mother she will always be there smiling back at me through him.
Have a Happy Thanksgiving all.
-cameron

happy haloween

Happy Halloween everyone!
This holiday is a favorite round these parts, we always do Halloween at Suanne's house, so Jasper and I will be heading out there.
Jasper this year decided on an Optimus prime costume and I will be a a Luchador (mexican wrestler), should be fun.

(Jasper at an early Halloween party)

Everything has seemed to be a challenge lately, even food shopping, so I hope tonight goes well.
We both have had a hard time in all this, so distractions are nice.
Distractions are so nice we got a bunch of new video games, I'm getting back into fire juggling, anything to keep me and Jasper busy.
I actually ordered fire devil sticks and got fire poi on accident, so another week until my sticks get here. I managed to work a deal for the poi, since they are here now, so I got them cheap.
I'm gonna try to brush up on my poi skills, I see bruising in my future.
I think doing the fire juggling will be good, you tend to hit a kind of zen spot when you have fire flying around your head.
-cameron

Thank you

Thank you to you all for your kind words stories and help. The wake I believe was exactly want she would have wanted. If you weren't able to make it that's ok, life has a funny way of diverting things. Just take a moment to raise a glass to her.
I've been asked a few times if this blog will continue, it will, because life persists.
This is a quote I found on brainhospice.com:

"I can never lose one
whom I have loved unto the end;
one to whom my soul cleaves so firmly
that it can never be separated
does not go away
but only goes before."

St. Bernard of Clairvaux

Such true words, I miss her more than words can do justice, and when I am ready I will write about her, our times together and the future Jasper and I face together.
For now I am focusing on healing, myself and Jasper, we both have a tough road ahead adjusting to a life without Elise, she was the heart of our family.
But we have amazing support, which makes things easier, so we will be ok, in time.
-cameron

Gathering to Celebrate Elise's Life

When I spoke to Elise and asked what she wanted for her services she said, "I want people to drink and celebrate my life, not focus on my death.". Elise was always the type to see the good no matter what. So to honor her attitude on life and to honor her wishes, that's what we are going to do.
-Cameron

Place: Sole Repair, 1001 E. Pike, Seattle, WA 98122: http://www.solerepairshop.com/facility.html

Time: Monday, October 13th, 6:00 PM

Attire: Casual

Cameron will be sharing a slide show of pictures of Elise and pictures she took ... and some of her favorite music. Suanne will bring pictures from her childhood. You are encouraged to bring your own memories and stories of Elise to share with everyone.

A post about Elise from the blog of a dear friend...

The morning sun passes by as I sit in an Internet Cafe in the Okanogan. A light behing the clouds leaves me with lingering thoughts of a friend who has passed away this weekend. Reading now two days since, my heart can only go out to her Husband, Son and Mother who have been by her side this long six months since she first went to the Hospital. But strangly I feel serene knowing that Elise's spirit is following it's next journey, and her body now rest from the pains it has gone through this summer.

Elise was a special soul, one that you only meet once or twice in a lifetime. Her smile seemed always to be fresh and warm, and like the Aries she was, youth seems to surround her like an aura, even in the hardest of times. She loved life at it's core, and seemed to be on a mission to help other people feel the same way. Even on a hike we took last year in the Snoqualmie Rainforest, following her 3 year old son, that had already found her love of nature with his excitement over pointing out the different types of ferns, and flowers. Her Husband is a man that shared her strenght in his love for her and her child. Watching them together at their wedding, the birth of Jasper and day to day life. His strenght over the last few months has been and inspiring display of true love. And even in her illness, her choice to travel out to the National Parks so as to spend the last time with her family with good memories is something that brings a smile to my heart.

I remember siting with Elise and talking about life and death along time ago. As I watch the first light on the Mountain side, I remember that she felt like a young soul, that had many more lives yet to live and to touch others. I can feel now, that her spirit is passing between worlds, and will come again. For such a strong spirit cannot be left to linger to long away, it has to much love to share. Her greatest memorial is left in the memories and thoughts that she left all of us with. For those who were blessed to meet her, she will always remain. Such a passing can only leave one with thoughts of thier own life, and a lesson to be learned. A calm realization that there is only the day that we live, the joy that we find in the world we pass through and the company we keep, and the promise to appricate each day before us, as we have those that pass...

Goodbye my friend,
I will miss you...

Ridgewalker

A word from Suanne

It's been pretty surreal, these past few days. I keep busy attending the details of all of the arrangements that must be made. It's a comfort to be with both Cameron and Jasper, sharing our good memories and grief. Hubby John is available whenever needed, even through his own grief. Carma has been a comforting presence at the apartment for the last two days with her kindnesses and helpfulness. Jasper is dealing with it all as a 5-year-old ... he makes us all keep smiling through it all.

If you would like to do something remember Elise or her family during this time, here are some ideas:

*Post a comment on this blog with your memories of Elise.

*Send a card to Elise's family/caretakers:

-Cameron & Jasper Kinnamon: 805 112th St. SE #J103, Everett, WA 98208

-Suanne & John Carlson: 4329 334th Pl SE, POB 1300, Fall City, WA 98024

*Donate to Jasper's college fund: Follow this link http://raisingjasper.blogspot.com/2008/04/college-fund-for-jasper.html

*Make a donation to Cameron & Jasper: Use PayPal button at the top right of this page.

*Make a donation in Elise's memory for brain tumor research: Follow this link http://www.abta.org/index.cfm?contentid=54

*Attend a gathering held in Elise's memory, a social time for friends and family, to remembering Elise over some drinks: Details to follow.

Elise passed away last night

She has passed on, and is finally at peace.
-cameron

Elise

Just to let everyone know, for the most part Elise is sleeping peacefully and we have a good supply of pain meds to keep her comfortable thanks to hospice.
Jasper seems to be doing well with everything. We had some serious talks about whats going on and he responded well.
-cameron

hard

There is a lot of signs pointing to this being the last days Elise is with us. I hate admitting it, but that seems to be true. I can't live day to day in a comfortable denial anymore.
Today marks six months since Elise's release from the hospital. It has been a crazy six months, but in that time Elise, Jasper, and I have done a lot together and have really enjoyed being together.
I'm thankful for that time we had together.
-cameron

trying to stay positive

I've suspected but didn't want to admit to myself that the situation is worse that it seems.
Elise has been manifesting physically signs that her tumor has grown again spreading further into the right side of her brain. Her symptoms, until recently, have manifested in the right side of her body, due to the tumor being more on the left side of her brain. Now we are seeing symptoms on her left side we never saw there before. I'm scared to say that the situation looks bad, although I hold onto hoping it's just the flu, the reality of the situation is making that not seem likely. Elise has missed her chemo due to all this as well, which I don't believe was working as well as we all thought it was.

On this blog I really try to stay optimistic, so this has been a hard post to write.

Suanne is still coming daily to take care of us all, and is staying on top of the meds situation as well as trying to coordinate Hospice getting involved so Elise can stay home where she wants to be.
Also, check out the comments, Suanne has been doing updates in the comment area.

-cameron

suanne update

Cameron, Jasper and Elise are all starting to get over the flu. Jasper's doing one of the more active Wii games and hasn't coughed hardly at all ... what an improvement. Cameron is feeling well enough to go out and do some grocery shopping. And Elise's breathing is much less labored, she's talking a little bit, and coughing less since I've got to their place this morning. I'm the only one that isn't getting better yet ... but, I'm a few days behind them. I'm still waiting to hear from home health care and hospice ... hopefully I'll hear something today. Suanne (Elise's Mom)

sick part II

We are all still sick, see the 2 comments on the last post for more info from Suanne.
Jasper is getting better, Elise is still barely responsive, I'm worse than yesterday and Suanne has been here daily to be supermom.
This is definitely a hard time.
-cameron

sick

Jasper. Elise and I have gotten some nasty sickness. I had to call in the big guns to help out, Suanne.
She came as soon as she could and took care of Elise and Jasper since I was having a hard time keeping up while sick. So a huge thank you to her.
My job as caretaker and Father can be overwhelming as it is, but when we are all sick it's near impossible, I couldn't have gotten through today without Suanne. She even did dishes.
-cameron

home again

She is home and resting.

random pics

Here are a couple random pics.
The start of my new sleeve dedicated to Elise.


Elise at home


Jasper and his best friend playing video games

small update

Elise just passed her swallow test and is enjoying a cup of soup and a latte until we can get lunch ordered for her. Now, we just need to find out about the Avastin infusion and I believe she'll be ready for discharge. What a long couple of days. Suanne (Elise's Mom)

hospital update thursday

Elise is still in the hospital, hopefully she will be coming home very soon.
The MRI showed some new edema (swelling) causing the seizures I believe, currently she has finally stop having seizures because they finally got here anti-seizure med level to a therapeutic level. She was suffering from in simple terms continuous seizures, the Latin for it sounds much more scientific. Although the seizures have stopped she still is suffering in other ways. Her speech has improved and she can now hold a conversation pretty well but her thoughts are still a bit jumbled. Because of her seizures she couldn't eat or drink without choking so it's day three without food or drink for her. She is having a really hard time with that, hard to not give her stuff too.
She is hoping to come home today, but they won't let her go until she can pass the swallow tests.
Also she has her scheduled chemo today which they are continuing with.
We fell into our old hospital groove without missing a beat, Suanne stayed last night and I did the night before, it's surreal how familiar everything has been, same faces and some of the same patients around.
I don't know when she will be home but I hope it's really soon, in the meantime she is in room 4240 at the UW Medical Center.
More later
-cameron

overnight

So Elise was admitted overnight so they can do a MRI in the morning to figure out exactly why she is having such severe seizure issues.
She is back to talking again but is still struggling to get out words.
Post again tomorrow when we find out more.
-cameron

back in the hospital again

After spending half a day home Elise got worse again and was rushed off to UW in an ambulance. Since last night she has been suffering from an almost constant seizure, her speech is affected, so she is having trouble talking.
They are trying to get a hold of her doctor to come down, until then hopefully she will get a MRI so they can better see the situation.
All this does come as a shock since she was supposed to be getting better. Even with the tumor shrinkage she didn't get better. We were supposed to see an improvement of her symptoms but there was none, which had me worried for the last little while.
Hopefully they will figure this out soon so we can get her home again.
-cameron

hospital update

Elise is more responsive now and has calmed down a bit.
She went into something similar to a gran mal seizure and didn't come out of it for a couple hours. She could barely speak at all.
After they gave her some anti-seizure she has mellowed out and is speaking again. Something has happened and we don't know what.
Waiting is one of the hardest parts of this hospital game.
I just heard that we will transfer down to the UW, still a mystery, she is supposed to be better.
-cameron

back in the hospital

don't know whats going on yet she barely responsive, more later.

good news

Yesterday Elise went in for her bi-weekly chemo treatment, an MRI and usual stuffs. Her mom Suanne takes her to all her appointments, giving me a break to focus on other things, like housework and the like. I got to say quickly that she drives an hour to get here then drives to Seattle and back for Elise's appointments then drive an hour back home. She has been truly amazing and dedicated to making sure Elise is where she needs to be when she needs to be as well as making sure all the right questions are asked of the doctors. I can't thank her enough for all she does.
So yesterday I got a call from them. Elise said, "Good news!". She went on to explain that her new chemo treatments are working and there has been some shrinkage of her tumor. If the treatments continue to work it could add six months to her life expectancy. As long as the the chemo works they will continue to give treatments.
I was so excited I ran and told Jasper and he was excited too, he let out a yell of triumph, followed by Yay, Mama's tumor shrank!!!
Later I told Elise of his zest and Jasper said, yeah I was so excited.
Good news is savored and celebrated in these parts.
In other news I am working on a tattoo with an artist at Sunken ship Tattoo in Everett. The Tattoo's centerpiece is a drawing I did for Elise as a symbol of what our love means to me, I am very excited about it.
-cameron


Random Pics

Jasper was a preemie, through a month and a half in the hospital Elise never left his side.


A great picture of Carma and Jasper at a M's game.


On a trip to the Seattle Science Center Aiden and Jasper give me their tough guy faces for a quick pic.


Pre-Jasper days, Elise and I at my cousin Justin's wedding in Salem, OR.

Holding Steady

Elise has her second Avastin infusion on Wednesday. Since her last one, she's been holding steady ... not getting any worse ... good news! We'll know more when she has another MRI in September. In the meantime, she's been enjoying time with her family and neighbors.

Jasper is getting so big. He turned 5 last week and we had a fun Spongebob Squarepants party for him. It was a hot day, but the kids stayed cool in the pool ... and the adults lounged under the shade trees. I hope Cameron can post some pics and video of the activities.

Last night Jasper spent the night at Gramma's ... we "camped out" and slept in the little teardrop trailer ... watching the thunder and lightening as we fell asleep.

Suanne (Elise's Mom)



random pics

First Treatment

Elise had her first Avastin treatment. The way this medicine works is by preventing the formation of new blood vessels. Since tumors "feed" on blood, Avastin "starves" the tumor. Elise spent over four hours at the UW Medical Center yesterday afternoon/evening, first getting lab work-ups to make sure she was healthy enough to get the Avastin, then getting the 90-minute infusion. It was a lengthy, but uneventful process. Elise will go for Avastin infusions every two weeks.

Although Avastin has yet to be FDA approved for GBMs, major brain tumor centers have had some promising results from its use. (Avastin is typically used to treat colon cancer.) We are hopeful that Elise will be among those who benefit from its use and that she experiences no harmful side effects.

Suanne (Elise's Mom)

news

So here we are in August, time seems to be going to quickly.
A lot of craziness seems to be creeping into our lives, car getting stolen etc., but as always there is so much good in the form of those people in our lives it's hard to let the bad get to ya for too long.
Elise's most recent MRI showed that her tumor has doubled in size. It's growth has manifested itself in her symptoms worsening. Memory, speech, and movement in her right side have degraded. The tumor has grown up and foreword, unfortunately growing into the frontal lobe.

Tonight we had one of the hardest talks we ever had. We told Jasper that mama is going to die. It was right up there with breaking the news to Elise back in the hospital.

Elise did a second round of chemo recently which made her really tired, but she got through it very well. With the growth she had a few treatment options that she now can't do. So her next treatment will be a stronger more aggressive form of chemo.
-cameron

stolen car

So our car, the civic, was stolen last night. This morning it was recovered minus my subwoofer and a bunch of cd's. Sucks, but otherwise the car is how it was.
In other news Elise will begin her second round of chemo in a couple days.
Things are good.
I want to wish my sister Carma a happy birthday.
gotta run,
cameron

No News is Good News

It's been a while since I've posted ... but wanted to let you know that we are enjoying a nice stable time with Elise medically.

Cameron, Elise & Jasper have been spending some good family time together at home. They've made friends with another young family at their apartment complex and have had some barbecues together. They also came to Elise's 4th of July party in Fall City. It was entertaining watching Cameron and the other "big boys" lighting off the fireworks. We had a fun time with lots of "ohs" and "ahs"! The kids (and kids at heart) even roasted some marshmallows for somemores.

Also, on the 4th, Elise's good friend from high school, Jamey and her mom came by ... bringing a beautiful scrapbook they made of memories from a cross-country trip Elise took with them while still in high school. There was lots of reminiscing and catching up going on!

Last Friday, Elise's step-sister Echo gave birth to Luke Andrew. We visited them at Echo & Joe's home yesterday. I'm sending a picture I took with Auntie Elise holding Luke, along with Jasper, Echo, and big brother Lane. After we visited with Luke yesterday, Elise and I took Jasper and Lane to the park to play then to our house to visit and have a some dinner under the shade trees. We wanted to give Cameron, Echo and Joe some time off to rest up.

On Thursday, we go to the doctor again to get ready for Elise's next round of chemo that starts early next week. Then, in mid-August, once Elise stops feeling tired from the chemo, we start some out-patient physical therapy to capitalize on Elise's increasing strength.

Stay cool ... Suanne (Elise's Mom)

Elise, Jasper, Echo and Lane with Echo's new baby Luke.

hi

So now Elise seems not to really be suffering any side effects from the chemo sand I couldn't be happier about that.
We have been doing stand and pivot transfers. So her leg strength is increasing some, which helps for the transfers.
We possibly have some outpatient rehab coming up, which would be awesome. She is progressing without it, so with rehab she could be doing a million times better.
We are really excited about the fourth, can't wait, should be fun.
Jasper is growing like crazy, and has been great help with Elise. He is such a sweet soul.
Still pretty busy these days, more when I get a chance.
-cameron

Chemo Round 1 Completed

Elise finished her first round of chemo. She had to skip one night because of nausea. We aren't sure if she felt sick due to the chemo, or if she had the same bug that Jasper had a few days prior. The doctors increased her anti-nausea meds. Outside of that one incident, she's had mild side effects ... yeah!

Elise went to a follow-up appointment with the rehab doctors last week. The doctors were very impressed with the increase in movement and strength on her right side. They prescribed some outpatient physical therapy to help her learn to stand again ... with walking as the ultimate goal. They also gave her some good ideas of how to work on standing up at home.

The 4th of July in Fall City (where hubby and I live) is always a fun time as the neighborhood lights up with many individual family firework displays ... We are looking forward to having Elise, her family and some friends over for a good time!

Suanne (Elise's Mom)

chemo

Tonight Elise starts her chemo, I really hope it doesn't effect her as badly as I suspect it might.
Jasper got to go to the zoo with his best friend Aiden, they are too cute, they play together every day. Here they are playing Spongebob.

Update from Suanne

We've been home for about a week now ... recooperating from a wonderful trip, and beginning a new round of medical appointments. The weather turned cold and blustery, so Elise opted to cut the trip short ... plus, she started feeling the effects of the lack of steroids (decadron) -- more tired and fuzzy thinking. Since then, she's gone back on a management dose of the steroid. Her energy is up, thinking is clearer ... she's just back to being more of herself. In fact, she's getting much stronger on her right side, no longer needing as much help getting from here to there ... yeah!
She had another MRI yesterday (Wednesday) and found that the tumor is stable (no growth) ... that is good news. The doctors decided to be a little less agressive given the tumor's no-growth status and Elise's functional improvements. They recommended putting the stereotactic radiation (gamma knive) option on the back burner for when/if the tumor grows, and focus now on doing chemo therapy. So, that's what Elise will be doing ... maybe starting as early as this evening.
The chemo therapy is a pill (temodar) that she'll take for 5 days each month, just before bed. One side effect that we were told to expect is tireness, starting about the 3rd day into taking the pills and lasting for about a week. The doctors tell us that they are pretty good at finding the right anti-nausea medication to handle the sick feelings.
We saw some beautifuly country on the Yellowstone trip, spent some fun times enjoying family, and listened to some good music on the way to and from ... we've got some wonderful memories to cherish. Cameron and Elise got some wonderful video and pictures that capture those moments forever.

more pics

Happy Father's Day

Better late then never I guess, been busy since we've been back.
But a Happy belated Father's Day to all the Dad's out there, specifically Daddy Dudley, my brother my brother Ken, brother in-law Sean, John, Grandpa Ken, brother in-law Joe, Matt of Pagliacci and all those dads I missed.

we're back home

Good to be home, more pics when I get to it.
-cameron

back to yellowstone

So I say goodbye to wi fi and probably won't be able to post until we get home because it's camping from here on out.
It's been a lot of fun, Cody, Wyoming is a cute town and it was really nice to meet Elise's Aunt Connie and Uncle Dave. They really made us feel at home and treated us to some great food at The Irma Hotel.
I am a bit sad that we didn't take advantage of all the fun things to do here. However our first day here Jasper and I did run down to the Wholesale Fireworks store and get some great stuff.
-cameron

We are at the half-way point of Elise's Yellowstone vacation.

Tomorrow morning we leave the comfort of Cody's Super 8 Motel, managed by Elise's Aunt Connie and her husband Dave. They have been gracious hosts and provided a very comfortable stay. They even treated us to dinner at the historic Irma Hotel ... good food ... where we met a gentleman bearing a remarkable resemblance to Buffalo Bill Cody.

Yesterday we went fishing at a small local lake. Despite the wind, Elise was able to catch (and release) a small perch. Cameron got a couple of nibbles and Jasper enjoyed himself a lot ... especially playing with the night crawlers! I think they are ready to go fishing again.

For about a week now, Elise has not been taking any decadron (the steroid) and I'm pleased to say that she's handling it very well ... that is, she is not experiencing the extreme tiredness or fuzzy thinking that was a problem last time. Since we've been on this Yellowstone trip, she usually takes a nap during part of the day to conserve her energy to do some activity later in the day or evening. And some times she's takes a full day to recuperate and rest up for the next day's activities.

Tomorrow we'll be staying in the actual national park for this first time during this vacation ... at a campground close to the middle of the Yellowstone. It's suppose to be dry tomorrow, but I wouldn't be surprised to see a few snow flurries (that don't stick) while camping there. It's forcasted to get to freezing during the night. I'm just looking forward to setting up and tearing down the campsite only once in these next 5 days instead of every evening and every morning like we do when traveling here and back.

(post by Suanne)

more yellowstone pics + the road to Cody

captions later tonight

today and yesterday

Jasper at breakfast

Jasper jumping from bed to bed at our hotel room

Elise at breakfast

sunset in west yellowstone

A buffalo a couple feet away from me

old faithful

Jasper playing with kids at old faithful

hot springs, very hot