An important message from Julian

Hi all,
Julian is floored by the amazing support they are receiving. He does have a specific request, however, that we send all of our messages and thoughts to Karyn via mail, and/or the blog. Please do not call her cell phone. Here's why:

Karyn loves all of you. Karyn is such a social gal. Karyn has a hard time saying no and when she hears people are asking to see her it's very difficult for her. She's got the "I want them to come, but I'm so wiped out, but I feel bad turning my dear friends away" syndrome. Julian says "the time will come when everyone can see her and it's going to come so fast."

Let's show them how much we love them both by giving them, but especially Karyn, the quiet they need.

I know this is hard to hear. Who am I to tell you what to do? I apologize if this note causes anyone pain, frustration or even guilt. I certainly understand and have felt them all myself. Regarding guilt anyone might feel about past calls, etc...forget it. How were you to know? Most of us don't have any experience dealing with something like this...most of us have no idea what it's like, physically, for Karyn. We're all learning together how to navigate through this maze, no one has made a mistake. We're all learning how to give Karyn and Julian exactly what they need. Today they've told us what they need. Today is a new lesson. Maybe tomorrow there will be more.

Hang in there.

The sun came out in Marin

Karyn has been transferred to the rehabilitation hospital in Kentfield (about 2 mintues from her home). This is great news. And... some of you who are in Marin County may also have noticed that the sun came out this afternoon (it's been gruelingly absent these last 8 days). I looked at my watch and the sun seemed to appear right around when Karyn was due to arrive. I take this as a good omen. She certainly does light things up, doesn't she?

Everyone's blog messages are surely going to pick her up. They are lovely. If you can't find the spot to leave a message, follow this guide: when you log on to: www.karyndesigns.com/thanksforkaryn, look on the right side... Under Previous Posts, at the end of the list you can click on Leave a message for Karyn.

*susan

Ways to Help

Thanks so much from K&J and their families for the huge outpouring of support. I'm getting more calls and emails every day and our group is growing! One of the best ways we can help all of them right now is by being sensitive to how overwhelmed they are and to give them the space, breathing room they need.

Here's some *business:*

**Karyn is unable to receive flowers due to the sensitivities of the other patients on her floor. Notes can be sent directly to their home. 66 Willow, Fairfax, CA 94930.

**Regarding meals...I am going to start a schedule and give it to the family for approval. The rules will be that the meal should be dropped off on the porch (with no expectation for a visit) by 4:30pm on the day you are signed up for. If possible, please provide it in a dish that does not need to be returned (sorry, mother earth...until they have more time, we don't want them worrying about this...we promise to recycle as much as possible).

OR If you want to make your meal now, freeze it and/or bring it to my house, I'll store anything in our extra freezer and drop it on a day that needs to be filled.

Please send me the following info:
A) the meal (preferably kid and adult friendly)
B) the day you want to drop it off (as early as today)

**Hopefully we'll be able to set up a schedule to visit Karyn. More info to come on that. Hang tight. I know we're all chomping at the bit to get to her.

**Some things already in the works:

• We're getting Aidan & Kiki's normal Kindermusic routine going again on Fridays.


• Aidy's having his normal Wednesday playdate after school today.


• Aidy's school community is starting to hear of the news and moms there are joining us.

ON another note: we are all super energized right now. Some of us (me, possibly?) have become obsessed with doing as much as we possibly can. We all need this outlet to deal right now, and I know we each need to feel connected to K&J right now (we are! They feel us!), but please don't neglect yourselves or your own families...Karyn will be pissed to hear about it if you do. :)

Karyn's Community - Feb 2nd

Hello all,
Karyn MOVED HER LEFT ARM TODAY! Julian said that the nurses were trying to get her to do another physically demanding task, and while she was attempting that, her arm moved. She was able to repeat the motion with Julian's encouragement. THIS IS HUGE NEWS! Hearsay from her dr. is that he's quite impressed and wasn't expecting "the arm" nearly this soon. She's not able to move it freely, but still Karyn's incredible. It's only 3+ days post-surgery.

She looking fabulous. You can hardly see her incision. It goes over the top of her head (not around the side like I described previously) and pretty soon she'll be able to flip her hair right over it and you won't see it at all.

Karyn was moved to a private room! Hooray! Julian admitted to having "worked it" a bit. Anything for Karyn. (And...he got himself a cot/armchair thing in the process...)

They are awaiting the pathology report and the review board, the results of which may not be in until next Thursday. They are still waiting to hear about when she'll be moving to the Kentfiled Rehab hospital. Stay tuned.

Karyn and Julian are extremely busy. Karyn needs to rest as much as possible because she has physical therapy every day. There are TONS OF US who want to be by her side and I know it's feeling disconnected, but Karyn feels connected to every one of you.

Karyn mentioned a Cancer Walk in May that's a goal she's shooting for. For more information, you can talk to Thet: thet10@comcast.net AND...the BLOG is UP and READY TO GO! Thank you sooooo much to Ted Meister...you rock. Julian showed it to Karyn on his laptop today and she burst into tears when she saw it. She's so touched by how much everyone cares. You can post comments on the site for Karyn to read and she's going to be able to leave audio messages as soon as she's ready.

Thanks to everyone who's signed up to bring meals to their home for the family. They are very grateful. For more information on doing this see the "Ways to Help" posting on the blog.

Best,
susan

"Get a bottle of champagne, some strawberries... and celebrate"

Hello all,
I spoke with Julian tonight and here's an update. (I'm not going to word this as well as you do, Jules, but I'll do my best from the notes I took.) They removed the bandage this morning and Karyn's incision looks really good. Really clean. It starts behind the hairline at mid-forehead height and extends over her ear. She's feeling and looking better. She's a bit more groggy today, but had her first physical therapy session and passed all the tests with flying colors! 100% short term memory, 90% peripheral vision and eye tracking. They are really pleased. Julian said she's now laying on her right side--a big deal! They are planning to get her sitting in a chair tomorrow. She was supposed to have an MRI later today to determine how much of the tumor they actually removed. A bed is waiting for her at The Kentfiled Rehab hospital, where she'll be just 5 minutes from home. Julian is "100% dedicated to getting her better, " but he assured me he's also taking care of himself. No ETA yet on when she'll be moving there.

Words from Karyn...She wants all of us to go out and get a bottle of champagne, some strawberries and "maybe some dark chocolate" and celebrate. When you do this...take pictures and send them to me...we'll make sure she gets them.

Best,
susan

Karyn's Community

Hello all...
While we digest the news and send our thoughts to Karyn and Julian, I want you to know that the idea for forming an outlet for all of your energy is already starting to grow. We're calling it Karyn's Community.

This idea is inspired by an article in the October 2005 REAL SIMPLE magazine called: "Group Therapy: How one collection of women came up with the ideal solution to help, support and comfort a friend diagnosed with cancer. They call themselves 'Teams Leslie.'" The gist of the article and the idea behind Karyn's Community is to come up with a system/schedule of sorts for people to help (even from another state or country) pick up Karyn and Julian's spirits. It could be a meal dropped off at their doorstep; a trip to the park for Aidan and Lieneka; a well-timed email, card, gift or bunch of flowers; or an evening out for Julian. The goals are to prevent them from being overwhelmed by the rush of people who want to help at the onset; save friends from worrying about whether they are doing too much or too little; and spread out everyone's efforts over the full course of Karyn's recovery.

One more thing we'd like to create is a website or blog--a central place for people to go to find out information, but possibly also be able to leave messages to Karyn and Julian. I know their email boxes are getting full! If anyone has the technical ability to set this up or wants to be involved in the design of it (which we know is important to Karyn!), please contact me.

Once Karyn is home and more is known about the course of her recovery, we'll be in touch.

*susan