Kelley's spirits high/ Monday Dec 3 new Release date

I spent the day with KK yesterday and they have started the drugs for Shisto. They were worried about side effects, but KK is doing great; no side effects so far except extra superwoman strength from the steroids. She is doing great in physical therapy and should be released on Monday! Hope to see all of you next Sunday on the 9th in Coloma. Thanks for the support! Julie

Diagnosis Update!

Some big news folks, I have just pasted in the message Kurt sent to our core group yesterday, cause it says it all... read on....

Yesterday, Kelley's blood results came back. The absolute very last test of very many, all negative so far. She was the one who asked for this final test. The result showed positive for Schistosomiasis antibodies. Schistosomiasis is a water transmitted parasite that isprevalent in Africa and S. America, but virtually unknown in the USA.Please Google "Spinal Schistosomiosis" to understand more about this. Everything fits her symptoms and findings. It also explains some non-typical TM results in her MRI scans. Furthermore, the Schisto parasite could also be (is probably) linked to her liver cyst and maybe even the fibrous tumors found in her reproductive system. I'll repeat a'maybe' on that last one, but there are documented cases.This is pretty bizarre, and some of the doctors at UCD are excited about it. They plan to make a special case study of Kelley. I think that this will help her get more proactive medical attention from them. Happy about that. Kelley and I feel some relief that the cause has been found and that additional proof points away from other diseases such as Lupus or MS. Today was Kelley's discharge date. It has been postponed for almost another week. She will be treated with a drug called Praziquantel and also more steroids, all orally. This treatment should kill the parasites if they still exist in her body. The treatment can cause additional swelling in her spinal canal, and thus the steroids. It is a critical enough treatment to require further monitoring at the facility. Please help make this another quiet week for her. Thanks for everyone's support! Kelley has an awesome attitude, and I know that our support helps to fuel that fire. Kurt (p.s. Kelley had been telling all of us and the doctors from day one that she was concerned that this might be related to what was happening to her. She knew she was exposed to this parasite when she did the Blue Nile expedition 3 yrs ago. Thank goodness she showed the tenacity we are all familiar with, and insisted they do this test! Even though previous doctors she had talked to about this, had dismissed her theory. Sue)

Fundraiser Event set for December 9th

All friends and community members are invited to attend a fundraiser for Kelley Kalafatich on December 9th beginning at 5:00pm, hosted by Howard Penn and the Sierra Nevada House in Coloma. Dinner, drinks, dessert, and a showing of Kelley's film "Three Women, Three Hundred Miles" will be featured. A $25 per person minimum donation for the dinner is being collected for Kelley's medical bills, as will funds raised from the silent auction and raffle. Event organizers can feeed only the first 140 diners, please RSVP to help us estimate numbers. Many volunteers, sponsors and donations are still needed. Please contact Janice Stanley, Fundraiser Event Chair, at redbudjanice@mac.com to RSVP or help.

Sleep/Fundraiser/Photos?

Thanks to all the support, Kelley has a place to live, a non-profit fundraising trust being set up, is finally getting a little sleep and actually has an 8 hour leave from the hospital tomorrow to check our her new digs!!! At this point, hopefully she will be able to go home next week sometime!
Janice, Howard, Teal and others in Coloma are setting up a fundraiser at the Sierra Nevada House in Coloma for Sunday, December 9th. There are donations coming in already for an auction! Howard is generously donating the restaurant for the festivities. Please contact Janice if you can help or donate, and of course; please come! I will post more details as they are known!
Janice's e-mail is redbudjanice@yahoo.com!
Please have a happy thanksgiving and be thankful for all that we have; including KK, in our lives!
Thanks and love to you all!

Julie

PS! Did you see what the cleaning crew did to the house? Amazing! Thanks construction and cleaning crew!

Kelley's Friends Rock

Leave it to Kelley to have a group of friends happy to take a Sunday to clean a musty and dusty house !!! Patti Boyer, Sandy, Darin O and Cheryl V armed with their favorite cleaning supplies, evicted the spiders, shook up all the dust and washed the place from head to toe. The supervisors, Jody and Carol, approved of our work and gave us the okay to go... Lance and Jim started early on the ramp and made plans for the bathroom renovations. It was fun and heartwarming to go through the house and listen to people telling how they knew Kelley and adding some fun story about her and her kindness. I loved the story about how Carol found Wilbur at the nurses station while Kelley was taking a test !!! The house is a god send, it is a Tahoe-type cottage in the woods surrounded by the city. There are 2 on site gardeners in goats clothing and plenty of room for Wilbur to roam. Very peaceful. Thanks again to the cleaning crew You Rock !!! Mary Ellen

Furnishing the new digs

Am helping coordinate furnishing the new house, so that K and K have enough but not too much at their new digs, knowing this all has to be moved to somewhere else in 6 months. The following is what I think would work, what we currently have covered and what we still need. The furniture should be lightweight (like swedish,ikea design) so it is not to bulky or heavy. Please let me know if anyone has anything to donate in the still need list, even if it is a 6 month loaner (which you will transport there and back home). They do not want you to go out and buy new stuff for them, so just looking for things your planning to replace with upgrades at your home. I am planning on checking out some second hand furniture stores tomorrow as well to see what might be available close by. Would like to get them mostly outfitted by the end of thanksgiving weekend, in preparation for Kelleys projected discharge date of the 27th. Call or email if you have one of the things on the list and it is available by that weekend or earlier. Thanks, Sue

Still need:

Comfy, not to ugly couch
Dining room table for 4 to 6 people
4 dining room chairs
front loading washer/dryer
pillows both bed and couch
light weight outdoor patio table with 4 chairs
bedroom table lamps
one standing living room lamp
end tables?
Small lightweight book case
Small computor work station

What we think we have:

From Dawn:
Chaise lounge
Lightweight end tables (number?)
Queen bed
Thin rug for living room

From Lisa and Sue
Coffee table
Queen bed
Space foam topper mattress
End table

KELLEY"S BIRTHDAY NOVEMBER 20th

Just thought I would let everyone know. Her address is: c/o Kurt PO Box 322 Fair Oaks, CA 95628
e-mail is kalafatich@hotmail.com

CLEANING PARTY/KELLEY POPPING WHEELIES

Hi Everyone!
Rumor has it that KK is already doing wheelies and jumping curbs in a wheelchair. Hopefully, she will master the art of wheel chair acrobatics in just enough time to walk out of it! Her estimated release date (hospitals are like prisons as far as I am concerned) is November 27th. The docs are still working to figure out the best non-narcotic pain meds as nerve sensations are still causing KK quite a bit of discomfort. KK is working on visualization techniques, meditation and other non-western types of pain management. She still needs quite a bit of rest and the Physical Therapy wears her out. We appreciate everyone's sensitivity to KK's need to rest and those of us who are "first string" caregivers also need to remember that this means "us" too.
I have organized a cleaning party for KK and Kurt's new house on Sunday at 9 am. If you can help out and haven't already contacted me; send me an e-mail and I will forward you the directions and other information. My e-mail is julie@sierrarescue.com. I really appreciate the response!
Love to you all!

Julie

CLEANING HELP NEEDED THIS WEEKEND

Hello Friends!
Kelley and Kurt have a house to move in to. Lance will be doing some alterations this weekend and there is help needed to clean up the house! I am trying to put together a list of people available to help out. Sounds like Sunday will be the best day. I am not sure that I will be able to make it; but I will be sure this all gets organized. If you can help, please send Sue and I an e-mail so that we can coordinate it at julie@sierrarescue.com and rivgu@aol.com.
Thanks to friends things are coming together to get Kelley out of the hospital as soon as they will let her.
Thanks again to everyone!

Julie

Housing Taken Care Of

Well I am happy to say nobody has to call me with housing leads, because a great option on housing has just been secured for the next 6 months in Fair Oaks through a friend in the Hui O Hawaii outrigger club. From what I saw today with her ability to huck herself around from bed to wheelchair and back, I still believe it will not be long before she will be able to go home, although they haven't said anything specific yet. Kelley continued to get good rest throughout the weekend. The pain Kelley is experiencing is a nerve pain specific to this condition, and is likely to go on in some form or another for months. It feels prickly, stingy, burny, she describes it like the feeling of skin coming out of frostbite, and seems to show up different places at different times. Rest seems to be really key in helping manage how aggravating this nerve discomfort gets, which is why we are being such Nazi's about the visiting. What Kelley is going through right now is exhausting on so many levels, and even simple conversations can be really taxing when they occur at the wrong time or too often. But we let her know about all the communications of support that has been sent and I don't think I can express how much it means to her. Lets hope for a good week, after a restful weekend they start back on the aggressive PT tomorrow to get her ready for outpatient life. Sue

NOV 12 am/THANK YOU/HOUSING/REHAB

Hello Friends!
THANKS SO MUCH FOR CHECKING IN ON KK and for the e-mail response! It is truly incredible. I am forwarding your e-mails to Kelley and when she feels better; she will start to catch up. The goal now is to get her through REHAB and out of the hospital.
She is working hard in rehab, getting a little sore and resting! THANKS SO MUCH FOR GIVING KELLEY HER SPACE TO REST and ADJUST! I will post something as soon as she is ready for visitors. Right now she is appreciating the time to rest and recover; but loves and misses all of you! She looks forward to seeing those of you who will be able to visit in the coming months and e-mailing those of you far away.
Right now the big push is to find a house for Kelley and Kurt in Fair Oaks or Folsom. If any of you have any leads or reliable housing suggestions; please call Sue Norman at (530)400-9888. We are hoping to find them their own place with one or two bedrooms that is wheel chair accessible or convertable. Thanks for any ideas!
There is reallly no way to know what the future will hold for Kelley's recovery. It will be a day to day adventure for her and as you know; Kelley will be putting all her energy into healing!
We are still exploring the best Trust/Non-profit fund raising/account options and will let you know as soon as somthing is final.
Thanks for all your love and support and the e-mails!

Julie

11/09 NO VISITORS UNTIL WED NOV 14th! AFTER NOV 14th VISITORS ONLY 4-6 pm

Hello Everyone!
Kelley will be in intense physical therapy for the next few days! The nurses will only allow family during her physical therapy hours. Kelley will be tired. PLEASE RESPECT KELLEY AND HER NEED FOR PRIVACY AND REST!
THANK YOU! Thanks again for all the love coming Kelley's way! She feels it!

Julie

FRIDAY NIGHT NOV 9/NEW ROOM 515/KK TIRED!!!!PLEASE, PLEASE DO NOT VISIT!

Hello everyone!
I will keep this short! I am in KK's new room. They have moved her to rehab in room 515! She is doing much better, but she is TIRED! I don't know how to emphasize in a supportive nice way that KELLEY NEEDS SLEEP; NOT VISITORS! There is a constant stream of visitors; all very much appreciated; but with rehab and tests and moving rooms there is no time for KK to sleep and just have some peace. We all love her and want to see her and support her. There will be plenty of time for that!
They are doing another CAT SCAN tonight to check a spot on her liver and make sure it is not a parasite that she brought back from Africa. This is unrelated to the transverse myelitis.
KK's attitude is as you would expect; AWESOME! She just needs a little space to get used to some adjustments and catch up on some sleep.
Thanks for your understanding and ALL YOUR LOVE!!!

Julie

Update, Friday 11/9

Kelley has been taken off all the IV pain meds, and is finishing up a five day course of steroids. The doctors have completed most of their testing into causes etc, and through the process of elimination still feel that the diagnosis is tranverse myelitis. The word from Kurt is that from Saturday onward into next week will be a very critical transition for Kelley. There really is no more treatment the doctors can give her for her condition. Her body (and mind) will need to take over and continue to heal. He asks that we all help now more than ever to keep things quiet, visits short, and Kell's rest periods long. Assuming the pain does not come back at the end of the steroid treatment, she will be starting an aggressive PT and training program to give her the skills she needs to manage her disabilities and leave the hospital. No estimate on when that might happen yet, but I think by the end of next week, we should have a much better idea. Somehow I think Kelley is going to pick this up fast (alot of the same skills used when rigging to flip I think). A couple of us are looking into a mechanism for tax deductable donations to help pay for Kelleys needs related to this illness, and I think we may have found something that would really work well. Hopefully can provide more concrete information on that soon as well. For those of you who may want to visit this weekend, I would call the night time watch the following morning to get a last minute assessment on what kind of night Kelley had to determine whether it would be a good day. The schedule for this weekend is Julie Munger (Friday night), Kurt (Saturday night), or myself Sue Norman (Sunday night). If you don't have our phone numbers just call the hospital and get dialed into the room. From past experience I would not plan to visit without checking in first. Thanks all, Sue

Update, Tuesday 11/6

No real new news to report. The inflammation in Kelleys spinal cord is still running its course, so the treatment is still limited to monitoring the progress of that, managing her pain, and running different tests to rule out different causal agents. Kelley keeps having a mix of good periods, and difficult periods with the pain management so it has been hard on her. They keep mixing up the drugs they give her when one stops working or causes to much nausea. She is hanging tough, but of course we would all expect that. The PTs and nurses are amazed at how agile she is and easy to move around, but of course she is doing most of the work herself. Keep your prayers and positive thoughts flowing, Sue

KK has a NEW BIGGER ROOM! 5139-02

Hello KK supporters!
Great news tonight! KK is doing great! Her attitude is awesome. She is not in pain and looking good! They have moved her to a new and bigger room that was originally for three people and now is only for two. At this time; she has it all to herself!!! She is enjoying it while she can and it is luxurious for a room.

HER NEW ROOM is 5139-02( the 02 is for bed 2) and her number is (916)703-8540!

It looks like KK may be up for visitors this week!!! Keep checking the blog!

Thank you all!!!

Julie

Sunday Evening Update

sunday evening update
Kelley had a bit of an up and down weekend while they kept adjusting pain meds that would work without making her nauseous. Whatever they did today seems to be working well. Kelley got into the wheel chair and had lunch with the "girls" in the cafeteria. Still no more real news regarding the tests they are currently doing into causal factors. But she was feeling the best today then she has in quite a few days, and that is huge. All for now, Sue

KK Pain is getting under control/ thank you

Hello Everyone!
KK's pain seems to be under control and Kurt and KK are ready and open for visitors this weekend! Yahoo!!! Now that the pain is being managed KK can put her energy into healing!
You all have been amazing! KK and Kurt are so blessed to have your love and support!
If you need a user id and login to post on this blog you can use mine. Just give me a call and I will give it to you.

Again, thanks for all your understanding and support on the days that she was not up for visits.
Please check this blog before you come to look for changes or updates. We all keep this blog updated.
Thanks again and love to you all!

Julie Munger

What's going on now!

Hey Everyone!
Thanks for checking in on this blog! We are hoping to use this to give day to day updates on how KK is doing and start to network together; both for support for her and support for each other.
PLEASE, PLEASE, PLEASE at this point DO NOT come to the hospital! KK and the family appreciate immensely how much love and support you want to shower on KK. The absolute BEST thing for her right now is time to rest, heal and figure out how to deal with the pain.
PLEASE, PLEASE DO...send cards, romantic comedy or happy DVD's, or your favorite book on CD, and if you wish money to:
Kelley Kalafatich c/o
You can send cards and letters to the hospital at:
Kelley Kalafatich East#5, Room 33, Bed #2
c/o UC Davis Med Center
2325 Stockton Blvd
Sacramento, CA 95817

or to her home address at: c/o Kurt PO Box 322 Fair Oaks, Ca 95628

Her e-mail is: kalafatich@hotmail.com

CURRENT UPDATE AS OF 9 AM on November 2, 2007

KK is still trying to get the pain drugs under control. She is resting and her team of pain doctors is trying to find the right combination of meds to keep her awake and alert and out of pain! Progress towards this goal is good and it takes time to get the drugs in her system and see how she reacts.
They are doing another spinal tap later today. They are still trying to identify the specific antigen that is causing the lesion/inflammation on her spinal cord. At this point, the lesion is in the lower lumbar spine and she is still paralyzed from the waist down. The prognosis is still unknow. She may get better; she may not and she won't be out of the woods for it getting worse for another week.

We can not express how much Kelley, her core caregivers and her family appreciate the love and support of all of you!!!!!!

Julie Munger