on going home soon

Elise's discharge is coming quickly and I feel so excited to be getting her home.
However there is so much left to do to get ready for her. I will spend friday cleaning and packing and moving, saturday and sunday moving, and monday setting up and receiving medical equipment and having it set up, ie. a hospital bed. Finally Elise is scheduled to come home tuesday.
If you'd like to help me move this weekend email me at:

cameron.the.pirate@gmail.com

Elise has been working hard to be in the wheelchair as much as possible, she blew her old time away and clocked over 5 hours in the chair today. I'm feeling like she improves every day.
Our lives have changed so much, and going home is a new adventure in all this. Elise is having a hard time believing she is actually going home, it'll be over 2 months in the hospital when she goes home and it feels like a lot longer.
But hey, we're going home soon and that's good stuff.
gnite,
cameron

hi there

sleep over

Tonight Jasper and I are having a sleepover with Elise, we had pizza and played video games. It's been a lot of fun.
-cameron

busy at home

Sorry I haven't done much in the way of posting, been busy trying not to get sick, doing catch up housework, and taking care of Jasper.
Jasper is finally getting better, but had harsh ear and nose pain along with his nasty cold over the last couple days. It's good to see him getting better, and that means I can get back to Elise soon.
We are planning a sleepover for Jasper at the hospital, it should be fun.
-cameron

Yet another suanne update

Just wanted to let you know that Elise has regained some movement on her right side ... similar to what she had before she came up to rehab. They are going to start electronic stimulus (e-stem) to help her right-side muscles get used to being used again. All the rehab therapists and doctors were very excited to see this improvement. Also, she's just past the half-way point through radiation ... wahoo! Take care, Suanne

Another Suanne Update

It's been a while since I've written an update for the blog ... mainly because they keep me so darn busy here in rehab. Elise continues to amaze both the therapists and myself with her progress. Moving in and out of the wheelchair is becoming easier and more routine now. She's also becoming more accomplished at using her left hand to do everything (even though she's right handed). Medically, the doctors are working to protect her lungs from blood clots with the filter that was put in a couple of days ago along with some blood thinning medications (to keep the filter unclogged). It's a balancing act because they don't want to give her too much of the blood thinners so that it causes the brain tumor to bleed either. I really appreciate all of the work and expertise that the UW medical professionals are bringing to the table on Elise's behalf.

We did get the second opinion back from UCSF and they provided the exact same same diagnosis as the UW Medical Center.

My hubby John and I are looking into getting a wheelchair accessible van for Elise. Elise wants to visit Yellowstone National Park this summer ... so, the van will not only be used for taking Elise to and from her hospital appointments, but also for some fun day trips and to Yellowstone. Elise says that she's looking forward to making some wonderful memories for herself and her family.

When Elise started radiation therapy, they told her that many people start feeling tired after a couple of weeks of radiation. Well, the tiredness has now kicked in for Elise. Beginning yesterday, she's sleeping between appointments and activities (which actually is giving me this time to write a quick blog). I talked with the radiation oncology nurse about it, and she said the best way to deal with the tiredness is to stay as active as possible and to be on as much of a routine sleep/wake schedule as possible (a challenge in the hospital).

I hope you all have a wonderful Easter filled with joy and hope. Suanne

first day of spring

Happy first day of spring.
So after taking Jasper to the doctor they said it's just a really bad cold so just fluids rest and vitamin C. Last night he got about 15 hours sleep, I got about 13.
I listened in via phone to the Panel yesterday and now her new discharge date is April 8th. This should work well because the soonest we can move is the 6th or 7th and we still have to have all the medical equipment delivered and set up before she comes home.
Her last day of Radiation will be the 10th and her birthday will be the 11th so she will be busy still, but hopefully things will calm down after a bit so we can enjoy just being home together as a family.
-cameron

more

So today they put a filter in Elise's artery to prevent any clots traveling to her lungs.
I also got a call from Robert who was taking care of Jasper last night and he said that Jasper was throwing up last night and coughing a ton. So I saw Elise off to surgery then went and got Jasper and took him to the doctor. The doctor said it's just a really nasty cold.
So I will be home with Jasper for a couple days until he gets better.
Also I have a lot to do at home with the move to the handicap friendly apartment, cleaning packing etc.
Elise's stay at the hospital will most likely be prolonged due to the recent developments. Hopefully we can have her there until after the move so she can come home to an Elise ready apartment, there are a lot of things that have to be done like getting the rental hospital bed in the apartment and so on.
All in all it's a rough road but we are managing to chug along, Elise still manages to be in decent spirits.
Thanks again to those who have made donations to us, those funds will really help with the rental equipment copays and medical bills.
thanks,
cameron

one thing after another

So Elise has developed blood clots in her leg, the condition is called dvt or deep vein thrombosis, it happens in patients that don't have much movement or don't move around a lot.
They are giving her blood thinners for tonight and then putting in a "filter" in a main artery to prevent any clots that break loose from traveling to the lungs.
The medications they will give her will prolong her stay in the hospital, so the discharge date will be scratched for another.
Suanne is doing a lot of work on procuring a vehicle that will work for transporting Elise.
goodnight,
cameron

the search continues

We are hunting for a van with a lift or ramp that can fit Elise's wide wheelchair. There are a couple dealers of handicap vans and some on craigslist we are looking at.
The target discharge date is still the 23rd, so a week away, and Elise couldn't be more excited. Should be interesting with all the packing.
-cameron

message from elise

the volume is low, but her is a message from Elise.

happy march birthdays

Happy March birthdays to Alyssa, Cindy and Sean, Mom Clark and anyone else celebrating their birthday. Had to say that cause we have a great deal of march birthdays on my side of the family.
Today went well having Jasper here at the hospital. Unfortunately neither our car or the car we had lined up will work fro transporting Elise, so now a desperate car hunt will ensue.
Wish me luck.
-cameron

second try at vlog

assessing

They are still keeping her very busy.
Today in physical therapy she stood up on her left leg twice using the parellel bars. Did over two hours in the wheelchair and I gained much confidence in my abilities to transfer her from bed to wheelchair etc.
The "Panel" made up of therapists and dr.'s involved with her care meets with us within the next hour to do the weekly assessment and adjust the discharge date, if were lucky, to sooner than later.
Also we found out today that we are losing the spot that Jasper has in daycare which will be really hard on us all, Jasper because he's made friends and just adjusted to being there. Also there is the issue with what to do with him while Suanne and I are training for Elise's homecare.
more later,
cameron

the journey home

Elise told the therapy people I want to go home in a week, she is so determined. She continues to excel in her therapies so maybe sooner than later.
Every Wednesday the "Board" meets to review progress and make determinations, hopefully with her progress they will make a new discharge date closer to Elise's wishes.
That darn cold I had I'm having trouble shaking, and it seems to have gotten to Suanne's husband John. So my wishes of good health to him.

I have received some very nice emails from a lot of people, and if I don't respond in a timely manner I'm sorry, energy seems to be in short supply, so I apologize if it takes me a while to respond. I do read them, and also I read them to Elise when we have the time to do so. She has really enjoyed the kind words sent to us, so thank you.

Random pic, taken by Elise on a hike.

tour

So currently Elise is up in a wheelchair on a tour of the hospital, she was very excited to be going out. I'm excited for her.
Elise is giving so much in therapy sometimes I have to tell her to take a break, you can see how much effort she's giving and the exhaustion on her face. I'm proud of her.
-cameron

untitled

Elise has been doing well today and managed two hours in the wheelchair, she managed to squeeze her mom's hand and to wiggle her toes, pretty exciting.
She continues to do well in all her therapies.
She got to visit with Jasper today and he will be back later today after hanging out with Natalie, I'm sure he's having a lot of fun, I think he's sweet on her.
In the works is a huge birthday bash/benefit for Elise coming in April, not sure exactly what it'll be but it's going to be fun and everyone is invited.
-cameron

what a day

It was a wild chaotic day, but things have mellowed out.
Elise did an hour in the wheelchair again, I learned how to help her with range of motion exercises, and she is doing so well in speech therapy the therapist is having trouble keeping up.
The excitement was over a possible infection, but I don't want to go into that to deeply.
Thungs are mellow now though and we are off to bed.
g'nite,
cameron

wheelchair and stuff

Elise got a wheelchair today and managed to be upright in it for a full hour. It was a lot of work for her and you could tell she was exhausted. She did great on her speech therapy and continues to make good progress daily.
It is a long hard road for recovery, but she is giving every little bit she has, she wants to be able to come home.
Suanne continues to be a priceless advocate for Elise really hustling for the second opinion. Looks like it'll happen.
My sister Carma is also someone helping out a great deal, taking Jasper almost every other night, so big thanks to her, she is amazing.
My other sister reproduced a woobie(blanket) that I had as a child and carried with me everywhere, so Jasper is the proud owner of Woobie 2 - the sequel, which he asked for tonight as he went to sleep.
My mom sent up some beautiful handmade hats and a wig for Elise just in case she might want one.
There is a lot of people helping, doing what they can, and it really touches me how many people out there care, so I can't thank you all enough, Thank You.

4 weeks?

That is their estimate at this point, it may change depending on how the various therapies go. Today we talked to her insurance company about coverage on a second opinion and they said yes, so Suanne has been on top of UCSF hospital one of the best on the west coast for what Elise has going on.
Elise is doing well with the therapies and shows some improvement from day to day.
I'm getting better over the hump on that cold, so I am back with Elise tonight.
all for now,
cameron

good morning

Elise started radiation treatment yesterday and today she has the assessment. From what the therapists overheard it's looking like it's going to be more like 3 weeks. We will have confirmation and a target discharge date.
With the therapy Elise is learning to do everything one handed while building up the other hand, so all the bases are covered.
We are also learning about how her brain is functioning and ways we can help her communicate better, i.e. knowing where she has difficulties retrieving the correct words, and working around that for now. The Speech therapist said it would improve with time and because she is young her brain might just remap some pathways.

I wanted to take a minute to thank Suanne for all she's done publicly. She hasn't only been there for Elise but for me as well. Also she has been doing a great deal of the behind the scenes work such as acquiring paperwork for services and even filling them out for us. She has been amazing! So Thank You Suanne!!!

Also I want to thank you again for all the donations we received, they have enabled us to do some wonderful things and some everyday things as well, like gas and food.
I appreciate continued donations as well, it's a long hard road ahead with a lot of unknowns. Our bill for the four days at Harborview alone was $33,000, no word yet on how much her insurance is covering yet.
That's all till later today.
-cameron

By the way, today marks four weeks in the hospital.

Busy Times Ahead

The Rehab staff posted Elise's schedule. So, I thought I'd share it with you. After breakfast she has physcial therapy from 10-11, occupational therapy from 11-12, lunch from 12-1, speech therapy from 1-2, transported to a different location in the hospital for radiation therapy from 4-5, and then dinner. This schedule is Monday through Friday. Weekends include additional rehab therapy sessions but the schedule will be a bit different. No radiation therapy on the weekends. Elise will be one tired puppy. When I asked her tonight what she thought of rehab so far she said she hoped it was going to be short because she wanted to go home ... I call that motivation!
(Monday night by Suanne)

scheduling

So Elise a daily schedule of therapy and radiation treatments tomorrow. Wednesday they will assess her and come up with a target discharge date.
I still have a nasty cold but am masked up and spending time with Elise down here at the hospital. I am really excited about knowing a target discharge date. Seems like forever since she's been home.
-cameron

Suanne's Sunday Evening Update

As I start my 5th full night/day with Elise, I want to thank my hubby John for taking such good care of me ... making meals and bringing clean clothes to keep me well stocked and cared for. Cameron and Jasper are still home sick and are getting better. They've come in and spent several hours with Elise during the past two days, with masks over their mouths to stifle the spread of germs. Elise's Uncle Glen (my brother) came up from California this past weekend and gave some wonderful support, as well as a Thai Yoga Massage for Elise. In fact, Elise has had lots of nice visits from many family and friends this past week ... they really do her heart good.

On Friday, the doctors got the final pathology report that confirmed that Elise has a grade IV glioma, called a glioblastoma multiforme (GBM). It is in a part of her brain that makes it inoperable. If you want to learn more, the UW Medical Center has a good web site about brain tumors at http://depts.washington.edu/neuroonc/. Other good sites include the American Brain Tumor Association at www.abta.org and National Brain Tumor Foundation at www.braintumor.org

Elise is working very hard in her occupational, physical and speech therapies. Improvement from day to day is very noticable. The physical therapist mentioned today that she thinks Elise will do very well when she gets to rehab. We are expecting to get her moved to inpatient rehab tomorrow. Once there, she'll work three hours each day doing various types of therapies. She'll also finish the last part of the preparation for radiation therapy tomorrow. The actual radiation treatments start on Tuesday.

Elise can't wait to get home to her family.

PS: When you visit, please avoid bringing treats with sugars as Elise is temporarily diabetic due to the steroids she is taking. Thanks much, Elise's Mama.

busy girl

Elise continues to be busy with therapy. It looks like Monday will be he day she is moved to rehab, but she is still doing it in her current location.
I on the other have gotten Jasper's cold and am now snotty, coughing sick so I am still housebound although Jasper I did get to go for a visit today.
Suanne is pulling double if not triple duty at Elise's side and her Uncle Glen is also bedside up from California.

Here is a couple more pics of people showing their love. I can't thank you guys enough, she loves to see these pics!


Elise's Uncle Gary, who actually was the first to shave his head for Elise.








Our good friend Robert






And friend SooZie