Tuesday, August 25, 2009

In a Nutshell: The Story of Katie's Cancer Journey

For those of you who are new here, or who haven't gone back to read the first postings of this blog, I am posting here the "nutshell" version of Katie's cancer journey. If you want the day by day information of that journey, there is more detail in the Journal section at www.caringbridge.org/visit/katiegerstenberger.

On Oct. 10, 2006, at the age of 11 and a half years, Katie was admitted to Children's Hospital, after 3 weeks of sick days & doctor visits, with what looked like a virus (low-grade fever, extreme fatigue).


Prior to this, she was the picture of health, and had had a busy, healthy, happy summer, hiking, participating in drama camp, taking a trip to Vancouver, B.C. to see "Phantom of the Opera" on stage, and riding a wild roller coaster at a theme park, among other activities. Katie had just started middle school (6th grade) at a private academy for artistically-inclined young people.

She was diagnosed with a neuroblastoma tumor in her abdomen and heart. Later, the diagnosis was revised to undifferentiated carcinoma (and finally, to adrenocortical carcinoma).

Pathology (using electron microscopy) led to the new diagnosis; experts at St. Jude's Hospital were consulted. Her chemo regimen was changed to address a carcinoma.

We moved from our home to Ronald McDonald House in Seattle, and there we spent the next 3 months in and out of the hospital for her chemotherapy. Each night, Katie had one parent with her in the hospital, while the other spent the night with David at RMcDH. We were together as much as possible, supporting her, with David moving (for 9th grade) to the Hutch School in Seattle, and Gregg shortening his work days.

In January, after 5 rounds of chemo, we went home for a much-needed rest, before returning to the hospital (and moving back to Ronald McDonald House) for Katie's surgery, which took place Feb. 21-22, 2007. Drs. Waldhausen & Cohen were able to successfully remove the entire tumor, which had started on the adrenal gland, encased one of Katie's kidneys, filled her inferior vena cava and entered a lobe of her liver & her heart. It took 18 hours to remove the tumor; pathology tests showed that it was indeed adrenocortical carcinoma. Thanks to Puget Sound Blood Bank & donors for the gift of life Katie received (70 units) during surgery! That gift inspired 3 blood drives in our community to (more than) replace the blood that Katie used.

Katie spent 3 weeks in Cardiac Intensive Care Unit, recuperating (the incision couldn't be closed for 2 weeks). She then moved to the surgery ward, & spent 3 more weeks recovering there, with physical therapy and rest helping her to grow stronger. On 4/1/07, we were allowed to go home for good!

In early May, Katie had a PET scan which showed microscopic bits of cancer in her upper back (nothing emergent). Since the doctors had also found microscopic signs of cancer in her liver, scans were scheduled every 3 months (it was considered by doctors to be a slow-growing cancer). The theory was that whatever might grow would be found in plenty of time (and surgically removed, if it became a problem). Katie started a regimen of oral chemotherapy called Mitotane to help prevent the cancer from growing. It gave her flu-like symptoms, but she was still able to go outdoors and have fun.

In June, the kids went to Camp Goodtimes, and had a blast. They were starting other summer activities when Katie began to have pain in her lower back & legs. She had pain relief medicine, massage & physical therapy, but the pain increased in strength and frequency.

A CT scan revealed a new tumor, spread to Katie’s bones, spinal cord & liver. Dr. Park said there was nothing they could do to get Katie into remission. Hospice was called, the Mitotane (oral chemo) stopped, & we were given medicines to keep Katie comfortable. We went home to try to accept the news that she was going to pass away.

Katie wrote her will, had in-depth conversations about her situation, and watched a lot of TV and movies. Close friends and family visited her. She had about two weeks of increasing weakness, when it became difficult for her to walk or stand. During this time, she & David were attendants in their cousin's wedding. A week after the wedding, Katie lost the ability to move her legs. One week after that, August 16th, she passed away peacefully, with Gregg, David & me at her side.

Please accept our thanks for your love, prayers & support. We appreciate every one of you.

18 comments:

Renee said...

Karen you will see her again. I have to believe that you will see her beautiful face again.

I'm so sorry.

Love Renee xoxo

Grandma J said...

Karen, I never cease to be amazed by your heroic Katie's journey.
I remember your family, )along with many others who have lost children) in my daily prayers.

Thank you for sharing your beautiful daughter with us.

Kay said...

Thinking of you today. Of the journeys we've taken that we never intended to take. Wow. Hope you find His rest and peace today, friend!

Smileygirl said...

Thinking of you and about this journey.

Love, lots of it coming your way.

Clippy Mat said...

Karen:
there are no words to offer that would change a thing for you but Katie's story is something that moves people's souls.
You are an amazing and loving mother. She was blessed to have you and to know such love.
hugs and prayers to you,
:-))

Busy Bee Suz said...

Knowing Katie's story already, I did re read this...and of course it breaks my heart thinking about all she had gone through...All your family has gone through.
It is just so unfair for a child to be taken away at such a young age...I never will understand.
I love that you have shared with me so much of Katie's Journey, as well as yours.
Hugs,
Suz

Jennifer said...

I try to carry of peice of Katie's spirit in my heart every day. Each morning, I remind myself that Katie and my beautiful young mother are both together, kindred spirits watching us and gentley reminding us to live these moments and accept these days as gifts from God. They are happy. They laugh. They know where we are headed after this life. Back to them...and into God's arms.

Elizabeth said...

Her face, if not alive in body now is so alive in spirit and love. I don't know her and am sorry that I didn't have that chance, but I do know her through you and the beautiful photos and ways that you've revealed her to us. Thank you, Karen, for this great privilege. Katie is just so beautiful..

Bridget :) said...

I smile everytime I see those pictures...her smile is infectious, you can tell she's just spunky and she's so beautiful. Imagine the day you will see her again. You are amazing!

endswith8741 said...

You know, the progression of those pictures is very telling. She starts out as a carefree girl having fun, and you see her again during what looks to be a very difficult time of treatment, and then a beautiful girl who looks wise beyond her years emerges.

There is a depth to her -- and a happiness -- in the pictures of her during the wedding, that I wonder if she would have carried with her otherwise.

Much love to you.

Mary said...

These pictures of Katie are so beautiful and I am so grateful to hear more details of her brave journey. The wedding pictures especially amaze me - what strength, happiness and grace she embodies.

Grace Matthews said...

I just sat down and read all of the journal entries and looked at all of the pictures. There is nothing I can say...She was a beautiful girl and you are a beautiful person. I wished we could all be so brave.

kim stephen said...

You are one special lady. I don't follow your blogs much since my cousin, Rob Kemp, passed away. It is easier to bypass the caring bridge and other sites and go about my daily life--selfish, eh. I read Missy's update and saw your post and wanted to thank you for all your words of encouragment--you are awesome. I have prayed for you and your family. You are stronger than you realize and have a beautiful way of expressing yourself. Your strength amazes me and others. Thank you so much for sharing--it helps more than you know. I feel like I know you and that you just live down the road instead of across the country. Again thank you for everything you do to console Missy--she never left Rob's side through the whole ordeal and none of our family can absorb how she practically gave up 7 years of her own life to this child. She is also an amazing woman. Thank God for good people just like yourself. You who have been in the darkest of life's trials and yet you are still helping others to overcome their own grief--that has to be one of the best gifts you could give and you are a giver no doubt. Hope that the good you are doing for others is returning to you ten fold. Bless you, Kim Stephen

Deborah said...

Of course Renee was here. I am so sorry. I cannot even begin to imagine if I had lost my daughter at such a tender age, or any age. I am just so sorry. Lifting your family in prayer, never ceasing. All my love, Deb

Jeri said...
This comment has been removed by the author.
Jeri said...

What a beautiful young girl. I'm so sorry for your loss and can't imagine the pain you must feel. I pray that the Lord will fill the empty space in your hearts. Thanks for sharing Katie's story.

Jeri

Pretty Things said...

I found this site via Allegra, and my heart hurts for this. I wish I had a ton of good words, healing words, but I'm ... wow. Just overwhelmed with amazement at this wonderful, gracious, beautiful girl and how her family moved heaven and earth for her.

Uniquely Me said...

I found your blog, and Katie's story, through an Inch of Gray, and Grief and Gratitude. I could not read about your beautiful daughter and not leave a comment.

Katie's story, and her infectious smile, has touched me. I have no profound words to share, and nothing that could ease the pain of your loss. I just wanted you to know that I am thinking about you and your family tonight.