On June 1, 2010 our two year old, "Little Air Bear," was diagnosed with Childhood Acute Myeloid Leukemia (AML) Type M7. After enduring 146 days at Primary Children's Hospital, Erin is now in remission and living a full life at home with our family. Her strong will and constant happy smile is an inspiration to us all. Through our difficult circumstances we found great strength and peace in our Savior, Jesus Christ. Thank you for checking in on us.

Monday, March 7, 2011

The Single Greatest Difficulty

The other night I filled out a questionnaire for a research project being done by one of our Oncologists at Primary Children's.  The research is being conducted on "factors contributing to the burden of childhood cancer treatment on patients and their families".  There was one question within the questionnaire that has just been weighing heavily on my mind ever since.  It reads:

Please indicate which one of the following is the SINGLE GREATEST DIFFICULTY you have faced as a caregiver for a child with cancer.  (please check only one to complete the sentence below)

"The single greatest difficulty about being a caregiver for a child with cancer is that . . ."

1. Creates financial burden
2. Doesn't leave enough time for myself
3. Doesn't leave enough time for my family
4. Interferes with my work
5. Creates Stress
6. Creates or aggravates health problems
7. Affects our family relationships
8. Other difficulty (please list): __________
9. No difficulty

As we have been home and off treatment for 3 months now we are still feeling the scars that cancer has left upon all of us.  There is not one single great difficulty about cancer.  It changes everything.  Everything. 

Cancer tears your world apart as you desperately try to keep everything into place.

Erin beat cancer.  We are through.  But, we will never be the old normal again.  This is to be expected.  We are grateful for what we learned from our trial.  The blessings and miracles we witnessed have been special experiences we will forever keep within our hearts. 

Erin still prays every night, "no more tube-ees, no more hospital."  Today as I was giving her a bath she told me that she didn't have any more tube-ees or stickers so she can take a bath and get all wet  Cecily prays every night, "please bless all the people we know and don't know who are sick."  The last few nights she has added, "thank you that Erin has no more leukemia and please keep it from coming back." 

Sometimes I wonder why both of my girls are still praying and talking about leukemia and cancer on a daily basis.  John and I try so hard to not think about it.  But, it's like a really bad dream that is sort of stuck in the back of our minds. 

There are days when I look at Erin and am just so overwhelmed by the amazing miracle it is to have her healthy and running around our home.  It's like starting a whole new life with her as a healthy child.  It's wonderful. 

There are also times where I worry about her cancer coming back.  I'll probably worry about that for a long time.  Sometimes I think about how crazy my thoughts are.  This is what my mind went through today: I found bruises on her legs, arm, and face and seeing those bruises just brings a gush of worry into my mind.  I think about getting into the car and driving her to a lab to have her blood checked.  I think that her next Oncology appointment on the 24th is just too far away to wait.  I think about what I would do if her cancer comes back.  I think about how I'm going to juggle our family around while we live at the hospital and how in the world we would survive her going through a bone marrow transplant.  I hold her carefully and cuddle her longer than I did yesterday.  I meticulously look at her skin and wonder if the leukemia is taking over her blood again.  Then, I find a bruise on my own forearm and wonder if maybe I have leukemia too.  Then Cecily tells me that her feet hurt and I worry that some type of cancer is growing in her too. 

I really hate that cancer has made me think this way.  It bugs me.  It's absolutely ridiculous because my mind is just running away with it all.  I know that most likely her cancer isn't coming back, but still the worry is just stuck there.  That 50% of kids that relapse just kills me.  I wish we knew which 50% we were in.

These are my real thoughts.  I know that I am not the only one out there who is crazy like this.  It is part of the difficulties that come with cancer.  Cancer not only affects the person with the cancer, but the whole family. 

So going back to the "single greatest difficulty" question: I wanted to check every answer in the research questionnaire, not just one.  I wanted to circle and underline each difficulty in red so that they know that there isn't just ONE difficulty.

I'm sure you're wondering what answer I did put.  In the end (after debating it out with John) we marked "creates stress".  Becuase well, it did create a lot of stress.

On the flip side,

Cancer is so limited
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot depress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit


  1. Wow! That would be an almost impossible question to answer. Thank you for posting this - it made me see that I'm not the only person who thinks crazy thoughts... I don't actually think they are crazy thoughts, but I know some people do. Anyway, thank you.

  2. Yeah, I would have said "creates stress" too. Why the heck did they have the last answer on there? Guaranteed no one would check it.

    I think the fear of cancer will probably only fade with time. Hope you can feel peace about everything.


  3. yeah, that question stumped us, too!! one, single greatest difficulty?! we really debated circling all of them and then writing, "no, seriously!!" next to it. :)

    i think you guys picked a good all-encompassing answer. thanks for sharing your thoughts!

  4. That's a really lame questionnaire. From what I've heard you say I'd guess separation of the family was the hardest thing for you guys. You had plenty of "family" time - it just wasn't the whole family.

    Get off the negative thought spiral. Worrying will not change the future. You guys are survivors!