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Kari’s Story

Welcome and thanks for checking in!

Cruising on 12 years of battling the beast called stage IV metastatic melanoma and, I am still just as determined to win as I have ever been! Thankfully, we (the foursome at Camp Kaywoodie), are blessed with an amazing support crew of family and friends and a skilled medical team that has held on for the long, bumpy ride.  We are so grateful!

I was originally diagnosed with Stage IV metastatic melanoma in April of 2003 just as my daughter Emilia turned one.  At diagnosis, disease had spread to my lungs, femur and multiple sub cue locations and my prognosis was grave.  I completed 2 1/2 years of biochemotherapy and surgery at California Pacific Medical Center in San Francisco and was pronounced NED in 2004.  In recognition of the fifth anniversary of my diagnosis, I spent the first five days of May 2008 walking, with my father, from Napa to San Francisco (77 miles) to personally thank my physician,  Dr. David Minor and celebrate the gift of life.  It was truly the walk of my life! 

In May 2009 (the same month as my original diagnosis in 2003), I discovered somewhat 'by accident' a lump on my side. It was sudden and unexpected by all, doctors included. A biopsy quickly determined the lump was melanoma, surgery was done with no other cancer found, and I launched into an inpatient IL-2 protocol. Unfortunately, three month progress scans (mid Sept. 09) showed a new mass, launching a five month bicoastal diagnostic and potential protocol obstacle course.  Our search ended as of March '10, when after three attempts, I was accepted in the phase II PLX4032 trial at the UCLA.  I was an early and complete responder to the drug however, the side effects were severe and unfortunately, the disease returned by the end of the year.  

With few options available, I had surgery again in Jan. '11 to remove a tumor, muscle and nodes in my shoulder and were confident we finally had the upper hand. Despite our determination, melanoma is a crazy beast and it quickly returned.  After much discussion and debate regarding quality of life, impact on family, and attempts to forecast the future (ha, ha!), we made the decision for me to start on the newly approved drug "Yervoy" (Ipi) in May of '11.  

The response to treatment was positive and we enjoyed a few months "in the clear" only to have the end of the year bring the news that the disease had progressed to my brain.  Brain zapping commenced (gamma knife) and was followed with another course of Yervoy.  Thankfully my brain is showing signs of improvement (that is shrinking tumors!) but the disease in my body has not been stabilized.  2012 began with a storm of research and investigation on "what next" and it was determined that the immediate course of action called for the surgical removal of a mass in my duodenum.  The surgery was a challenging one but I  recovered well.  Radiation of seven additional tumors followed in conjunction with the another round (third) of treatment with Yervoy (Ipi) that will continued through summer.  Unfortunately late summer scans showed that my disease was again progressing and it was back to the hunt for a weapon to battle back.  In Aug. '12 I began a new 2 year trial (anti-PD1; Merck 3475) in southern California.  As of January 2015, another relapse has hit and we are exploring the best way to fight back.

As always, we remain guided by hope, astounded at the community that continues to surround us, very grateful for the incredible scientific advances that  provide us with treatment options and determined to live as full and "normal" of a life as we can. 

Tasks from Kari’s Planner

Here’s your chance to offer a hand: Sign up for one of the tasks below in Kari’s planner.

7-7:30 pm on May 6, 2015

Cook & Deliver a Meal for the Family

11:10 pm - 12:30 am on May 6, 2015

Airport Pick Up - Sacramento

2 passengers, me + my "hand holder"

8-10:30 am on May 12, 2015

Airport Drop Off - Sacramento

Pick up in Napa, drop at Sacramento airport by 7:15 am.

11 pm - 12:30 am on May 12, 2015

Airport Pick Up - Sacramento

Pick up at Sacramento airport; flight arrives at 9:10

7-7:30 pm on May 20, 2015

Cook & Deliver a Meal for the Family

7-7:30 pm on May 27, 2015

Cook & Deliver a Meal for the Family

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Latest Journal Update

GOING BANANAS!?

Crazy days we have had here at Camp Kaywoodie in recent weeks.  In the midst of celebrating milestone birthdays, the ramp up of graduating from middle school (x 2,), a very full work plate for David, and ticking off another year on the cancerversary front (12 years!), I am back on the trial war path.  Unfortunately a recent round of scans has shown continued growth of melanoma masses and it was determined that the treatment plan in place was not working.  With this, I had a busy couple of weeks knocking on doors, stuffing email in boxes and calling in favors everywhere possible to try and figure out the next best step. And, after a couple of weeks of a topsy turvy, not knowing what the plan would be, we are headed down a path.

I returned to Angeles Clinic in Santa Monica last week on very short notice to sign a trial consent (thanks be to a kind pilot that made it happen and a lovely travel companion that gave her day up to be with me). My signature on the dotted lineS (a gazillion of them), will make me the first human subject, worldwide for a phase 1 trial of PF-04518600.  More simply referred to as OX40, this is an antibody that has been shown to stimulate the immune system and potentially mount a response against tumors.  The last trial subjects were monkeys, so the side effect front is a relative unknown (the kids are wondering if I might develop an affinity for bananas or start picking nits in public!).  While the prospect of being first one in is a bit daunting. and trepidation dances in my mind at times, it is also a potential incredible opportunity to stop this melanoma beast.  

I am returning to LA on Tuesday for an obscenely long day of tests and screening scans as the final step to trial acceptance. If all goes as planned, I will start treatment as early as the week of May 4.  Unfortunately, due to the vast unknowns in this trial, the amount of time I will have to spend in LA is significant and this is going to present a serious logistics challenge for all of us.  My visits will be weekly, often overnight(s) for the next 6-8 weeks and then every couple of weeks thereafter.  That said, we are on a serious hunt for LA contacts (especially Santa Monica & close proximity) both for lodging and rides and will need support on the home front at Camp Kaywoodie. At this point, I am not able to drive due to leg challenges, so my days of independent travel are getting pinchy and challenging. This is perhaps the hardest and most frustrating part of this journey thus far.  No fair!

 My return to Angeles Clinic and Dr. Omid Hamid, was a very positive and reassuring event.  I feel confident that I have a team in place that has my best interest as a priority and that they are playing this wicked game of treatment options strategically and aggressively.  Their care and compassion goes far in replacing my fear and trepidation with focus and will, both of which are essential right now. So, on we go to this next chapter!

"What can I do?"....I get that question nearly everyday so I am doing my best to come up with quantitative, doable answers instead of the "find me a magic wand" replies.  This week we just need to make it through the week and Grandma Marilynn and Grandpa Gerry are going to be on board to help out so we are looking good.  In the coming weeks, there will be plenty of other needs (see list below, text or email me if something strikes your fancy).  As always, this remains a battle we can not wage alone. Your help and support are a key piece of the foundation that keeps up focused and fighting and we will lean on you as we march forward.  Endless thanks to all of you in the Camp Kaywoodie army.  We will walk on!

Much love & gratitude,
Kari

OUR PENDING "HELP" LIST:
  • There is a meal schedule set up on the "Planner" module of CaringBridge with some openings for cooking & some for catered meals.  Meal support is amazing and also helps limit my need to make it to the store.  The CK crew, at the table together, has been core to our journey
  • Please share the CB link to help keep people in the loop.  Using this tool to share updates relieves all of us from having to worry about keeping those that care updated and allows us to use our time to focus elsewhere.
  • Rides:  school pick ups, airport drops/pick ups, shopping for graduation clothes out of Napa (a mall), a couple of Benicia Tuesday/Thursday afternoons, and other can't get to needs.  I will post on CB Planner as I know dates and needs but if  rides are easy for you to help with, drop an email too and I will be in touch. I will likely be flying in and out of Sacramento in the short term.
  • Santa Monica resources. Lodging, rides and friendly faces.
  • Costco  & Farmstand runs:  a text before you go & I may add to your list.
  • House projects await.  We have simple fix its, paint projects, exterior wood care/refinishing, small electrical/wiring projects that could use attention.  We are in process of a landscaping overhaul and a few weekend work parties are on the books.
  • Travel Partners:  I am likely going to need a few brave souls to either travel with me and/or meet me on the LA end.  Not knowing what the side effects of the trial will be and not being able to drive has me a bit like a beetle on my back. Being able to have David at home with the kids and working is an essential part of keeping the camp front on track, and my brain calm, especially with year end activities stacking up.
  • Home Help:  although the kids are able to fend for themselves to a degree these days, we may need some check ins at home if I am gone for a long stretch.
  • Emails, texts & notes do make a difference.  Having not really driven much for the last 6 weeks, I miss the rest of the world!  Pics of you and yours make me smile.  Funny is good.  Staying in the loop is helpful.
There will be more as we get going here and I will post as I know.  Again, many thanks and much love!

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Comments

4 Comments

cat owen
By cat owen
Kari,

I am glad that you found a trial that could help. It gives us all hope that you can beat melanoma one more time. Please keep us posted on how you are doing on the trial. We all care about you very,very much.Good Luck.
Sharon Atkinson
By Love, Sharon, Skyler and Lily
Hello Girlie-- Just finished reading your posting. I will definately do a meal or two for you all. I want to let you know the Atkinson's are thinking of you. We will all pull togther and get you to the next step in your journey as well as your family.
Dana Lush
By
Hi Kari! Hey, I live in San Clemente. You are welcome to stay at my home. I'm about 77 miles south of Santa Monica (probably further than you'd like to travel), but please know you are welcome here! My email is danalush@cox.net Please also send me an email and I'll give you my cell number in case you need anything when you are down south. I think of you often my friend. :-) xo, Dana Hansen Lush
Gigi Ronayne
By Gigi Ronayne
Love to you and your family, Kari! I might have an idea for you for lodging nearby. Would Venice Beach be too far? Sending big hugs and lots of prayers from "the hill" -