Goal #2

Round two of chemo on Monday, August 25. Not looking forward to spending the week on the sofa. James has Parent Orientation Wednesday, August 27. I really want to go.  Goal number two- make it to Parent Orientation.

Update: I made it to Parent Orientation! 

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Eight Years

Photo Credit: Sarah Krepp 

"In sickness and in health"...when you say your wedding vows as 23- and 25-year olds, do you understand the belief and commitment of that statement?  Can you comprehend the love and selfless sacrifice it requires to live out your commitment to each other in sickness?  Daniel and I celebrated our eight year wedding anniversary this past Tuesday (August 12, 2014).

It was a good night but very different than what I anticipated for our eighth anniversary.  We had dinner and then watched our wedding video as a family.  As I was watching the video, I felt sad at times - it stung.  I was looking at our younger selves and thought "you two have no idea what is in store for you."  We have been through so much in our eight years and my sickness by far has been the most difficult.

I will never forget when I told Daniel the biopsy came back as cancerous.  The memory of his face as he came around the corner is frozen in my mind.  I knew it would break a little piece of his heart, and I knew our marriage would forever be changed.  As a result of my diagnosis, our marriage has been given a chance to grow into a deeper, more intimate Love.  I can't tell you how this will impact our marriage, but I can tell you that during the last month I have been reminded how serious Daniel took his marriage vows he made to me eight years ago.

I'm very proud to be Daniel's wife.  He loves me with such deep love.  I see it in the way he looks at me.  He looks at me with such a unique and intense Love.  I knew when we got married we would love each other, but I didn't understand the lengths that Love would stretch, and at times, carry us.  Even in our wedding video our Love looks immature - it's cute love.  Our Love now is a soulful, fighting, nothing-is-going-to-take-us-down partnership.  I'm so thankful to have Daniel  holding my hand as we fight this battle together.  I know we will cross the finish line together and stronger.  

Happy Anniversary Daniel, I love you.

Photo Credit: Sarah Krepp (She is wonderful, contact me if you want her info!)

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Big Sister

(Written on 7/29)

As I sit here on the plane headed home after a few days at Mayo Clinic (for Lisa's health), for just a minute, it feels normal.  I am looking out the window of the plane and all I can see below me are clouds and the moon rising over the clouds.  Lisa turned to me and goes, "it looks like heaven doesn't it?"  For a second, I find myself absorbed by the craziness of it all. How do you have two sisters that are in their early 30's and both sick? I have spent some of my energy on the "why's" and the anger has crept in at times, but it's not worth it and I quickly let it go.

Lisa and I have fun together.  Even though our last two "sister trips" were to Mayo, full of procedures and doctor visits,  it's not obvious to people around us that we have just come from two serious days at Mayo with the hope of better news.  The news is not awful – Lisa is not dying, but she's not better.  Yet, we still laugh.  Why can't the rest of the world laugh?  Why can we face such seriousness, but yet still love and laugh so intensely?  Whenever Lisa and I are together, multiple people will stop us and say "look at you girls laughing" and "so nice to hear the laughter."  Last night in the elevator of our hotel, a guy riding with us said "you girls sure are having fun".  Lisa took that chance to say "well, actually we both have cancer."  Based on the guys response (he literally about fell over), I don't think we will be sharing that tag line anymore.

Sometimes I get tired of people enjoying our laughter...if they only knew what we have been through and what we are about to go through.  I just want to say to them “you have no idea why we laugh.  We laugh to not cry, to stay strong, and to overcome this dark cloud that has been over our family for the last 2 years.”  Nothing makes sense about our relationship but the love of sisterhood.  When I am around my sister, I know God knew what he was doing when he made Lisa my big sister.  Even though I'm 31, got married first, and have 2 children (you would think that would earn me some sort of rank as "adult" in Lisa's eyes), she will always say "you'll never understand, you are just my little sister."  She loves me more than anything; our lives don't work without each other.  That's what is so awful about both of us experiencing this level of sickness – or is it a blessing to realize how truly and deeply we both love each other?

Lisa has taken a leave of absence from work to help me take care of my family and fight for my health. Her own illness has prepared her for this fight as she understands what I am going to face over the next year.  I am going to miss parts of James’ and Grace’s lives as I fight for my own, and if I can't be with them most of the time, I am so grateful that she is the one that will get that time with them.  I don't think I can truly express how much her friendship and sisterhood means to me.

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We Survived

Our week was crazy.

All three of the adults had infusions, and Gracie had eye surgery at Duke.  I wanted to document the week so when I look back in a year I can remember we all "survived!"

Monday, August 4 - I started chemo and spent the week recovering
Wednesday, August 6 - Daniel had his infusion for Crohn's Disease
Thursday, August 7th -  Grace had eye surgery (I was not able to go with her because of my compromised immune system.  Daniel handled this one on his own - he did AWESOME!!)
Friday, August 8th -   Lisa had her clinical trial infusion for HES and hit the one year mark for treatment (she started on 8/8/13)  

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