Tuesday, November 20, 2012

The joys of freedom...then back to the fight

Madeleine’s Blog

November 20, 2012
So do not fear, for I am with you
Do not be dismayed, for I am your God
I will strengthen you and help you
I will uphold you with my righteous right hand
Isaiah 41:10


It has been a little bit since I updated things...but I want to let you know that Madeleine has been having fun taking a break from the cancer treatments that have been such a part of her life for these past months. It has been so much fun ignoring melanoma!

One thing about this diagnosis is true: It really does give you an enhanced appreciation for the joys of life. Enjoying family, friends, snow, the freedom to travel, the joy of feeling good again - all of these things have been a part of her life during these past weeks.

Madeleine had her PET scan on November 9th, and then took off for the cabin at Mt. Lassen that afternoon. Up at Lassen, she enjoyed hiking through the snow searching for the "perfect" Christmas tree to bring home (an annual tradition), and she had lots of fun with extended family and her younger cousins. 

Shortly after coming home from Lassen, Madeleine took off on a road trip to see several of her friends who have gone away to college. She drove down to Southern California, taking the 101 freeway to enjoy the coastline, and stopping along the way to see friends as she went. She had fun dressing up and going to the "Marine Ball" with Austin, and then she spent two days at Disneyland going on all her favorite rides. 

With Austin at the Marine Ball
Madeleine drove back to Santa Rosa on Sunday, so excited from all her adventures and so refreshed. It was hard for her to hear the news that night that her latest scans showed some small growth in the melanoma in her liver (as well as the lymph node that she already knew about). Having just come off the high of her fun adventures, it was really hard to face that reality again.

The next day (yesterday), we went down to UCSF and met with the melanoma specialist there to see what options are available for the next stage of her treatment. There were several options discussed, and one involved the possibility of getting a spot in a clinical trial that has been shown to be very promising. (This is actually better than it may sound like at first because so many advances are being made in melanoma treatment right now, and sometimes the best treatment medications are still making their way through the clinical trial process, which can take several years.) The other option is something called Yervoy, which has also shown good results. So, we are in the process of getting Madeleine's complete records to UCSF to see if she would qualify to be placed in the trial. No matter which treatment she decides on, it looks like the next course of treatment will be a few weeks off at least. The clinical trial (if approved) would be done at UCSF and the side effects appear to be milder than some of the other options available. 

We would appreciate your prayers that the best treatment option for Madeleine would be revealed (whether it is the trial drug or something else), and that she would be protected and healed from this cancer. Thank you everyone for your concern and support.

5 comments:

Dave Cindy said...

There isn't a day that goes by that Dave and I don't talk about our Amazing Maddy! You are such an inspiration. The stories you told Dave and I about your treatments gave me a whole new look on the day to day struggles we all face. Oh ya and those aches and pains we get from "Roberts" class LOL!!!! No big deal!!!

It seem ever time I come up against something unpleasant or challenging you pop in to my thoughts and I power through!!! You have given me a very special gift through our friendship.
Love you my "Sweet Girl" XOXO

Anonymous said...

Hi Madeleine,

Happy Thanksgiving to you and your family! It's so nice of you and your family to post your updates, travels and adventures! We are happy to see that you've taken a great trip down the California coastline and spent some ice time up in the mountains with your family. You continue to be an inspiration of an inner strength and a positive will as you face this difficult challenge. We can see it in your photo's and contagious smile. May you continue to be blessed in the ways that you surely need; and may you be blessed with the insight to see blessings in your life that others may overlook. Good luck with your next treatment options and may you and your entire family be blessed with strength, hope and courage. We are sure that many people continue to follow your progress on your blog and imagine that many more would like to comment but have difficulty expressing encouragement when someone is facing challenges like yours. That is a big long blathering blunder of words, but they are heart felt! You are in our thoughts and prayers!
Joe & Pam Klekas

Joe & Pam Klekas

Lawrence Makin said...

Hi Madeleine,

First thing's first - I read that one of the options you might be considering now is Yervoy. It's just been recommended by our national health provider here in the UK. In fact, there's a great and very inspirational video news report on it on Sky News:

http://news.sky.com/story/1005838/skin-cancer-patients-find-hope-in-new-drugs

If you're sceptical of the link, then please just Google "Sky News UK", and then in the Sky News website search for "Yervoy" and/or "melanoma".

Naturally I am so terribly sorry to hear about your bad news, especially after having such a great break after the last set of scans. But I know you're a fighter, and like before you'll pull through this. One thing I have found with melanoma is that it takes the great times like that to inspire you to fight hard to reach the next goal (and the fun times that follow).

For instance, I'd wanted to visit the States since I was a little kid, growing up in South Africa watching loads of American TV. I desperately wanted to go there for University but my parents couldn't afford it, so I went to the UK instead. But I'd still been itching to go. I finally earned enough money to have a nice holiday there a couple of years ago, but that got delayed. My mother died last year of breast cancer, and I had my melanoma diagnosis in May this year. First available opportunity, I was on a plane. It cost a lot as I booked it very much last minute, but boy was it worth it! I went to four States, visited friends, saw the wonderful sights of the East coast. So my next goal is to go again, next year (maybe I can even pay a short visit)! And hopefully move there eventually.

One more bit of inspiration. In my office, on my floor alone, four people including me have had melanoma. We were all diagnosed at different stages, from 1 to 4. We've all had varying treatment, and the stage 4 guy was on his deathbed at one point. But you know what? We all made it, and we're all in the clear, even if only in the very short term (though stage 4 guy has been in the clear for almost 20 years).

You can do this. I know you can, and I'll be sending out good thoughts for you.

Anonymous said...

The Krohn family has you in our hearts and thoughts and prayers every day. You are an inspiration Maddy !! <3

Kristi and sal said...

I am so glad you were able to enjoy a few days before you received your bad news. I know you can beat this, you are a very strong young woman and you have so many loving family and friends praying for you. Please keep posting on the blog so we can keep in touch. Love Sal and Kristi from the room across the hall at kaiser in riverside :) by the way sal goes in for his last round of consolidation chemo in Tuesday.