Friday, February 29, 2008

sick

I manged to get sick so I had to stay home yesterday with Jasper who has also been sick. So I'm trying to get better so I can get back to my girl.
Elise has been a busy girl, lots of therapists, occupation, physical, and speech have been keeping her on her toes. Got an email from Suanne this morning saying she may be moved to rehab today because they believe a bed has opened up.
Rehab is the last step before going home, and they seem to think she will be able to although there is no time frame for that as of yet. When I asked they said three days to three weeks depending.
Wednesday night marked three weeks in the hospital and I love that people are still there for us, thank you as always to all of you for your continued support.
-cameron

Wednesday, February 27, 2008

the shuffle

So this Monday they are going to move Elise again, this time to inpatient rehab.
Elise will be learning how to move around to maximize self-sufficiency and also working on strengthening her right side because she lost a lot of mobility there. Suanne and I will also be learning how to help her move properly without hurting her or ourselves.
Thinking about this made me realize our low to the ground tiny lil 93 Honda Civic probably won't cut the mustard for transporting her and a wheelchair.
So I thought I'd put this out there...
If you know anyone willing to trade a reliable vehicle that has enough room to house me, Elise, Jasper and a wheelchair, and easy to get in and out of, please email me immediately at:
cameron.the.pirate@gmail.com
The only things I ask of it is for it be reliable and not a minivan, Elise detests them.
I also am going to put a listing on Craigslist for trade, but I figure if a friend fits that description, send 'em my way.
I have to offer a 1993 blue Honda Civic, that's been kept up very well by Elise and I. It has been a great car for us.
Thanks,
cameron

more waiting

Unfortunately we have to wait for more results, I guess gliomas and primitive neuro ektodermal tumor(pnet) can have overlapping results on some tests. So they are sending out part of her biopsy to one of the world's best pathologist for more testing with results being returned in about 48 hours.
They are planning for either result for radiation so they can jump on treatment as soon as they know.
Good news is Elise has been doing well since the shunt surgery, and has no pain as a result of it.
-cameron

all good

So Elise was in good spirits last night and was feeling well. She is doing great this morning too. She has lost a lot of wires and tubes so that has been liberating, and now they have moved most of their discussion to going home soon.
all for now,
cameron

Tuesday, February 26, 2008

surgery went good

Just got the news that surgery went as planned and Elise is the proud owner of a spiffy new shunt.
We most likely will be back in 4 northeast after she gets out of recovery, which will be an hour or more.
So yay, finally done, now we have the assesment soon and after that will know more about timeframe for getting her home.
Hooooraaay!!!

actually in surgery

That's right, hard to belive.
So Suanne and I are sitting in the surgery pavillion waiting room, same place we waited for the biopsy to be done.
I expect to be here for the next few hours, so I will update when I hear anything.
-cameron

surgery today...again

So it should actually happen today, they plan on taking her off to surgery around 1p.m. and the actual surgery will be around 3p.m..
So that's the news so far, more when I know more.
-cameron

Here are some random pics I thought I'd share...




Monday, February 25, 2008

Thank you Chuck

This is an email I received from Chuck D., the stars by the info below denote private info I didn't want to post openly on the internet. Just a side note but if you would like to give me a phone number or address for contact info please send it to me via email to help protect your personal info.:

cameron.the.pirate@gmail.com

I hope Chuck doesn't mind me putting up his email address for this event.
The below email I received from Chuck, I am extremely touched by this and encourage all who have the want to attend to do so.
Please contact him via email if you are interested in attending at:

fireproof654@gmail.com

Message from Chuck D.:

Hello to everyone who receives this email either from myself or passed along from a friend.

I want to invite everyone to join me on Monday March 10th to get together here at my place and pray for Elise. As a believer in Christ we believe in times like this where you feel hopeless and it seems like you can't do anything to help, we believe prayer isn't the only thing left to do, but it is in fact the very best thing we can do for those we love. I think we all stand in agreement that we love and care for Elise. Like others I couldn't believe it when I heard the news, and it was put on my heart right away to get all who love Elise here together, and lift her up to Jesus to do the amazing, which is heal Elise. We know from scripture that Jesus is the ultimate healer, and that he wants to carry our burdens, and that because of his grace we can go boldly to throne of God and pray for Elise. I don't know what everyone who receives this email believes in, but this is truly open to anyone. We invite all people to pray for Elise if you feel comfortable enough doing so. The main thing is that we get together and show God that we care and love Elise, and that we care so much that we would take time out of our day to get together and lift her up to him. This can also be a time to help raise money for Cameron, Jasper and Elise. As many of you know Elise was the provider for the family, and now that she is not working needless to say it will be difficult for the family financially. We will be providing information on how to donate to Elise, Cameron and Jasper.

When: Monday March 10th from 4:00 to 5:00
Where:********
Host: Chuck D.
I will be sending emails through gmail, and myspace to contact as many people as I can. For those of you that have received this email especially Ceri and Jason Cheung. Please if you can do your best to invite as many people as you can that might want to join us.
Thanks,
Chuck D'Amico

guess what...

Another surgery delay, due to a general surgeon not available to assist today. So it looks like tomorrow is going to be the day.
We are obviously very anxious for this surgery to happen, every time it gets delayed means more time in the hospital.
Well, tomorrow I guess.
-cameron

surgery today

It looks like it's really going to happen today, finally. In a couple hours she will be taken off to prep, then get it done, then recovery, then back to maybe the same room, she will however be transferred eventually to "the floor" as they call it, otherwise known as the regular rooms.
Elise has been doing very well, the only reason they have kept her here in the ICU is because of her ventrical drain, which needs special attention. When that is replaced she can be on "the floor".
Wish us luck.

Sunday, February 24, 2008

the road home

So Elise is still on schedule for getting the shunt tomorrow. Interesting thing that shunt is. It will run under her skin from the current drain location down to the artery on her neck, where it will go into her into her artery and continue down to the heart where it will end. They were planning another route but had to do this route instead for it to be safer.
There will also be a valve in her under the skin which can be adjusted with magnets post surgery, cool stuff.
We are really excited for the surgery because it's a huge step to getting her home.
So tomorrow she will be in surgery sometime most likely in the afternoon.

Tonight has been good, we caught up on a show we like and have been enjoying the time together. Hope to be home soon, but she still has rehab after the surgery to try to get her right side going better. If she can move around well enough they will send her home, so keep the positive vibes coming.
-cameron

Saturday, February 23, 2008

sitting up

Cameron and I continue to take turns being with Elise every other night. Thanks to Aunt Carma having Jasper this weekend, both Cameron and I got a night off for some much needed sleep and rest. (Thank you Carma!) When I got to the hospital about noon on Saturday, I was treated to a smiling Elise sitting up in a chair ... the first time since the 14th. She loved having her friends visit with her today, as well as Carma and Jasper ... who had gentle hugs and kisses for his Mama. Thanks to everyone for your visits to the hospital, as well as your cards and gifts ... all of your kindnesses mean so much. Elise even modeled a couple of knitted hats she received from her Aunt Gail in California. We took some pictures that Cameron will probably post to the blog. After a big day of sitting up for about 7 hours, Elise is now sleeping peacefully in bed. Her attending physician came by today to let us know she's still scheduled for surgery mid-day on
Monday. That's it for now. Mama Suanne

the pics...

Friday, February 22, 2008

touched

I am touched and amazed at the outpouring of love and support, thank you all.
Because of your donations I have already been able to purchase a camcorder which will arrive next week. Any other funds that come in will be put toward the hard road ahead, like support through her chemo and radiation (commuting for that), and medical bills not covered by her insurance and anything else that comes up.
So Thank You again.

On to news...
Elise got some good sleep last night, which is great because she hasn't slept for a couple days due to the steroids they are giving her as a temporary treatment to shrink the tumor.
She has started doing some physical therapy to increase strength on her right side, where she lost a good deal of movement. One of the conditions of her coming home is that she has to be able to move around well enough to take partial care of herself.
If you know Elise, you know she has amazing spirit, so I know she will try her hardest to get moving again.
After the shunt surgery they will do an assessment to figure out where, what and when. As in what is her abilities and does she have enough strength to start chemo and radiation. Where will she go next, as in home, nursing home, inpatient, and when will that happen.
So again we play the waiting game.
-cameron

Thursday, February 21, 2008

Come on down

So, Elise's surgery has definately been postponed again due to an infection that's not clearing up. It's been rescheduled for Monday. She's still in ICU at UW Medical Center, room NN516. She's enjoying the short visits from everyone. When you visit her now you'll be asked to wear a lovely yellow gown and blue gloves to help prevent the spread of infection beyond her room to other vulnerable patients. Suanne

a couple pics

I love this picture

Jasper playing his nintendo ds aunt Carma got him.

cuddle time!

So Elise asked me what her head looks like, so I took a pic so she could see, then she gave me the o.k. to put it here.

surgery moved again?

So this morning a doctor came in and said they will most likely delay the shunt surgery until monday due to infection issues.
That's all for now.

Update from Suanne (Elise's Mom).

Elise has been alert most of the last two days. In fact, she's found it difficult to sleep. Although, if you come to visit, it looks like she's on pain meds or something. This "drowziness" is part of the effects of the tumor. Because of the drains in her head, she has had to stay in bed. Once a permanent shunt is put in, she can get out of bed and really start to get her strength back to her right side. Getting that strength back is key to having her come back home to her family. After today's operation, the doctors will reassess her health to determine when she can start radiation therapy. At this point, the primary goal of the radiation is to stop the growth of the tumor. As she becomes more aware of the challenges and opportunities in her future, she remains upbeat and strong. To Cameron and I yesterday, she held up her right hand, in a fist, and said "solidarity" in her fight and "no tears." As my eyes
continued to well up, I asked if tears of love were ok, and she said "yes." I'm glad she said yes because I don't think I could stop showing my pride and love for her if I wanted to. She is a remarkable person. Suanne

Wednesday, February 20, 2008

hate to ask

So of course finicial concerns are a factor in all this. I commute daily to and from Seattle and also eat a lot on the go. We do have great help from people bringing in food, and that helps greatly, but it still is getting to be an expensive lifestyle. I hate asking for help, but I'm afraid I must.
With Elise's diagnoses, the reality of her not being around one day is a harsh reality I never wanted to face, especially since we have a small child at home.
Echo suggested we make videos of Elise talking to our son about different milestones in his life. So when he gets older he still has momma's wisdom to guide him and reassure him his mother loved him dearly.
So what I am asking is if I could have some help with money to buy a video camera to do this. Also any extra money will be put toward other items to make things easier on our family in these hard times.
I know many of us have a paycheck to paycheck lifestyle so I don't expect extravagence, but a lil bit here and there adds up.
There is a paypal button to donate here on the blog, paypal is an excellent way to do it, very secure, but if you don't feel comfortable doing money stuff online email me at: cameron.the.pirate@gmail.com and we'll figure it out, maybe by mail or whatever.
I have recieved two donations already, I won't mention names to keep it anonymous, but to them, Thank You! It means a lot to us.
-cameron

pics post

Here are more pics of decreased hair, right on peoples!!!!

Echo
before

after

pile-o-hair




Dudley(my dad)
before

before

after

after



and here is pics from my Mom Judi, Sister Cindy, Niece Ashley, and an appearence by my other Niece Alyssa.















Thank you guys for the support, Elise loved it.

Tuesday, February 19, 2008

thank you

I realized I forgot a lot of thank yous, So thank you to Suanne and John for the party, Echo and Joe, Robert and Kate, Chelsea and forgive me, her friend who's name escapes me now, Jen, Roger, Papa John, Mel, and the crew of Juanita for the birthday cake. I hope I got everyone. Oh, and Greg and John for the awesome food last night
On to news, Elise's shunt Operation was rescheduled till Thursday due to infection. If you visit be prepared to wear a gown and gloves.
A bunch of pics from my family will be up later today.
-cameron

surgery today???

The question marks are because she an infection and they may delay the surgery due to the risk of a greater infection.
Hopefilly we are still on track for doing it soon, the shunt will work more efficiently then the drains and will make her more mobile.
My birthday wasn't a bad one, I woke up to Jasper hugs, then he and I had a nice breakfast, then I got to spend the evening watching mythbusters and just spending time with Elise. Not too shabby.

Monday, February 18, 2008

Happy birthday to me

The big 30 huh, not so bad.
Suanne took this pic of Elise last night, thought I'd share it.

Sunday, February 17, 2008

update

So things have been somewhat non eventful as of late, which is a good thing. Elise has gotten to spend more time with Jasper lately and is eating pretty well.
Suanne is with her tonight and the last update I got is that they finished shaving her finally, and put markers on head to prepare for the coming surgery Tuesday.
Tomorrow is my 30th Birthday, so we will have a small shindig in the ICU room, if we can get away with it.
I got a bunch of pics from my family in California of their short haircuts for Elise, which I'll post tomorrow.
I'm off to bed, goodnight.
-cameron

a song

This is a video for a song Elise and I love, the video itself was done by a fan, the band is "The Kings of Convenience" and features the voice talents of the woman who heads the band "Feist".

Saturday, February 16, 2008

todays thoughts

So Elise has been awake for a while, still has some memory loss and other things that come with the territory, but in general she is pretty stable.
A big thanks to Matt, John and Jason from Pagliacci, she really enjoyed seeing you guys and she loved the Thai food, it hit the spot.


I have learned a lot about life through this experience, like your point of view can have a giant impact on the how you handle life.
Initially with the news there was a lot of crying, but I realized I am lucky in a way. She is not gone yet, and I get to be with her for a while longer, and knowing Elise, she will fight her hardest to stay here with her family. She is not the kind of person who gives up, neither am I, I will never give up hope.

more shaved heads

Yes you can still shave your head in support. So here is Echo's husband Joe their son and her brother John's pics.




Visitors

As far as visitors go, her condition is improving enough that visitors are an option now, they way we'll do it is have people come to the ICU waiting room and use the phone(just pick it up, it dials the nurse's station.) to let us know that the visitor is there, if she is ready for a visitor we will come get them and take them back.
She has been awake more and also more responsive thanks to the drains they put in. She really loves seeing people, but we have to keep it mellow, so if your coming to visit have patience, and hopefully everyone can get to see her.
Her room is 516, 5th floor, use the Pacific elevators to go to 5th floor and the waiting room for the ICU is on the right.
Remember that patience is the key here, there is a lot going on still as far as her care goes so don't get discouraged, we'll try our hardest to get everyone back to see her because she loves seeing people, it does her heart good.
-cameron

What everyone can do...

At a time like this everyone wants to be able to do something to help, I have gotten an overwhelming flood of offers to help.
Well I just had an idea of something any of us can do.
Elise has always been deeply concerned with politics, she worked hard to preserve National forests, and fight the good fight to preserve our nations beauty. She also was on the front lines of the organized protest against the W.T.O. here in Seattle years ago. She was angered by the people that acted negatively at the protest, just so you know, she was one of the good people there.
She is a deeply caring person who has always stood behind her beliefs and put her frustration into positive action when she could.
One thing that we spoke about many times is the sad state of health care in our nation. Why is it in this great nation that we still have people that can't get the care they need.
So if you want you could write letters to our representatives demanding Socialized Health care. I know some of you might not agree with it so I am not asking everyone to do this. But to me it makes sense that such a great nation should care for it's people in a more effective way.
Some people might be scared of the word Socialized, but remember this, our Police, Firefighters and schools are all government ran, and they seem to do a pretty good job.
Despite Micheal Moore's faults, I do recommend the movie "Sicko" for viewing, it has some good info.
If writing your representatives sounds like something you would like to do go here to find their contact info.

Long term

We read Elise all the blog comments and she regularly asks if there are new ones, so this is a good place to leave well wishes for her.
One thing I must say because I believe I haven't yet, is that the Dr.'s have said their goal is to get her home. When we do go home we will have to return M-F for Radiation and Chemo, and will most likely have a home care nurse for the duration.
So we are still trying to get my girl home where she'll be most happy and comfortable.
Thank you all for your kind words and support, we love hearing from everyone.

Friday, February 15, 2008

biopsy results

Today we got back results on the biopsy, unfortunatly it's bad news. It seems the tumor is a Level three or four high grade glioma.
The doctors said at best she has a year.
From here they will do the shunt or shunts tuesday and a few days later if they can start radiation and possibly chemotherapy.
I gotta go.
-cameron

awake

She woke up and was responsive, which did my heart good. I got to chat with her and show her the card Jasper and I got for her. It's a giant card and inside Jasper wrote I love U mama.
It was a good end to a rough Day.

Thursday, February 14, 2008

unplanned surgery

So Elise is back in the I.C.U. after an exciting night. She had to have to surgery to put in tubes to her brain to drain the Cerebral Spinal Fluid because her Ventricles were swollen putting pressure on some vital areas of the brain.
She remains pretty unresponsive, I haven't got to speak with her at all except a quick hi when they tried forcing her to wake up for a nuerological exam.
Tuesday they will put in a shunt or possibly two, which means more surgery, and unfortunatly the shunt(s) will be permanent. They are essentially tubes that drain the brains fluid from the head to the stomach.
I'm pretty taxed right now, it's been a rough night for everyone down here so more when I am up for it.
-cameron

Wednesday, February 13, 2008

shaved

So the head shaving was canceled because Elise had physical therapy appointments and she had a rough night so she needed her rest.
She can't handle a lot a noise or excitement so guests are being kept to a minimum while she recovers from the biopsy.
I just talked to her on the phone and she seemed in good spirits. I am home with Jasper for the night resting and will be back tomorrow to spend Valentine's day with my girl.
Jasper and I shaved our heads today, forgot to get a Jasper before, but just scroll down to see his hair before...




more

So I just got these pics from John C., Elise's boss and friend...

John before

during

after


also here is Jasper with the bear him and Suanne did a biopsy on

oh yeah....

Of course wash your hair well to help keep germs away from Elise if your shaving your head here. Also, don't forget a hat, it's cold outside and if your used to having hair it will feel extra cold.

Shaved John (Elise's Stepdad)

before

after

Jasper lookin at Grandpa hair.

Tuesday, February 12, 2008

Head shaving party

So they didn't shave all her hair off, I guess they leave that to the family to do, so tomorrow we are going to have a head shaving party here at the hospital.
We will however have to limit the amount of people in the room because it gets to be too much for Elise to handle. So we will most likely do like one person at a time shaving their head. We are trying to get a video camera, and I think we got one, so we can have video of it to put up here.
So far jasper, her stepdad John, my sister Carma(Kayla willing,lol), her friends Natalie, Jen, Jorj, John(her boss and friend) and I are going to shave our heads. If I left you
off the list I'm sorry, kinda warn out tonight.
-cameron

post surgery

I was told by the neurosurgeon that performed the biopsy that the surgery went fine, and that she would be sent down for a cat scan to make sure everything went well, then off back to the ICU after she is done in the recovery.
Hopefully she will be ready for visitors soon, I will post when she's ready.

Two tests will be done on the brain tissue sample, one could give us an answer within 48 hours but only detects certain kinds of tumors and the other one is the one I spoke of before that'll take a week.
That's all for now.
-cameron

Elise is in surgery

I'm in the surgery waiting room now, still waiting to hear.
On the question my Dad posed about me shaving my head, I plan on doing so unless Elise objects fiercely.
I was thinking that if anyone wants to shave their head in support, make sure you get a photo, if you can before and after photo's, then send them to me at:

cameron.the.pirate@gmail.com

I will post the pictures sent to me here.
For women, we are thinking of another option since it is pretty extreme for women to shave their heads, maybe like a lock of hair and take a picture holding the lock. If you got a better idea don't be afraid to suggest it via comment or email.

biopsy day

So today is the day, although they say results may take a week. The tissue sample they take will be shipped off to the Mayo Clinic with a stat order. Elise agreed to having her head shaved for the biopsy so if your visiting don't be surprised. She has been growing out her hair for five years so I'm sure she is a little sad but if you know Elise you know she can handle pretty much anything well. Actually I met Elise a month after she shaved her head, so it's not foreign territory for her.
Elise got a chance to see the blog and the comments yesterday and she is enjoying hearing from people, as am I because it lets me know you all are there reading.

Jasper's first Mariner's game.

Monday, February 11, 2008

Last night

So the steroid they were giving Elise makes her wired, as well as shrinks the tumor temporarily, so last night Elise couldn't sleep, and she was more lucid then I have seen her in a while.
We ended up chatting until 3a.m., she was back mentally to about 95% so I read her all the emails and well wishes and she really loved to hear them, in fact she joked she should of got sick sooner she loved hearing the kind words so much.
I'm tired so I'll try to put up a couple pics and then rest.*click on pic for full size*

Elise and Jasper last Fall when she took jasper for his first ferry ride


Elise and Jasper last August on a camping trip with me and Suanne.


Suanne and Jasper out hiking, picture by Elise


Me and Elise in 2002


That's all for now more tomorrow...
-cameron