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.

Tuesday, December 14, 2010

The Last Night

It's the last night. 

The. Last. Night.

I hope and pray that it is truly the last night EVER that we spend at Primary Children's with our sweet Erin.

As I sit here and take in our little room I am a little shocked at how well I know these walls. I could close my eyes and still see every detail of this hospital room.  It is so strange how it has become a home for us.  John and I were chatting about how Cecily and Caleb miss Erin so much.  They have only seen their little sister ONCE in the last 25 days.  What kind of a life is this?  This isn't a LIFE. 

Yet, it has been our life, our life with Erin's Acute Myeloid Leukemia. 

Leukemia, a word that was so foreign to me when it changed my world.  I can still picture myself standing in a checkout line at WalMart when my phone rang.  John's voice was really somber and he told me that our Pediatrician had called and that the blood test Erin had received 2 hour previous showed signs of Leukemia and that we were to go straight to Primary Children's Hospital.  It wasn't real.  It didn't feel real.  It did not feel completely real until the next day when the anesthesiologist took her sleeping limp body out of John's arms and into surgery to have a Broviac Central Line placed and a chemotherapy drug (ARA-C) shot into her spinal fluid.  We bawled for hours after that.  We had bawled for hours before that too, but it did not really hit that we were entering something new until that moment.  That was the start. 

Now we are at the finish.  6 1/2 months later with 146 days and nights spent at Primary Children's we are down to The. Last. Night. 

We are experts in new things. 

We know what time the call is made for the "feeding trough" (also know as the Hospitality Cart) and that if you get there first off that you get a bran muffin.  If you get there last you end up with a cardboard bagel.

We know that there are several kinds of Leukemia.  We appreciate when someone asks us "what kind of Leukemia does your daughter have?" instead of, "does your daughter have the good or bad kind of Leukemia?"  It is difficult and sobering to say that Erin ended up with the rare, more severe "bad" kind.

We know how to read a CBC (Complete Blood Count) report.  Each morning the nurse prints off Erin's CBC and we know exactly what WBC, RBC, Hgb, Hct, PLTS, ANC, Band, Neut, Lymph, and Mono stands for and what the numbers below them mean. 

We learned to love without the guarantee that our hearts wouldn't be broken. We learned to trust without the guarantee that what we wanted might not be what God wanted.

We know how to work the XBOX and Television.

We have learned to accept help, especially when we didn't think we needed it.  But, then we found that it was absolutely necessary to get help or we couldn't have survived. 

Erin is an expert in taking oral medications as seen by THIS video.

Flushing Erin's line and giving her antibiotics at home became second nature.  There were even some nights at home when I'd wake up in the morning and I honestly couldn't remember waking up in the night and giving Erin her IV antibiotics, yet I had done it.

We both learned how to cry like a teenage girl.

Erin knows how to give her baby doll a central line dressing change complete with "ouch" sound effects.
We know the ins and outs of the hospital.  We know where there is somewhere quiet to cry or where there is a soft comfy chair to read a book or type on this blog.

We know where to find a vacant bathroom. 

Erin has coped phenomenally well for being stuck in a hospital room for 6 months.  She has been so kind and loving to us and the nurses through this whole ordeal.

We know new emotions.  We had days when @#!*% surrounded us and other days when Heaven felt close enough to touch.

We can sleep through the IV pumps beeping, lights being turned on, and survive the 24 hour surveillance through a window on our door.  We could teach night-shift-nursing 101.

We know the phone voices of the cafeteria staff .  Someday I'd really like to meet John.  He was always the funniest to talk to.  I did meet Mikaela once!  I heard her talking to someone and I had to ask her if she was Mikaela from the cafeteria. 

We have become experts in hiding tears and putting on a good face.

We have made some amazing long lasting friendships with people we would never normally have met.  We are so grateful for these people who have shared their deepest emotions and feelings with us.  We are grateful that they were listening ears and shoulders to cry on.

7 comments:

  1. congratulations erin and your sweet family! your story has touched&moved me so much!im also a volunteer at primary child ens hospital i love working on ics! your family is in my thoughts and prayers :) merry Christmas !!!!

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  2. congrats hughes family! i can't tell you how thrilled i am that y'all are getting to go home, in time for the holidays. i'm also thrilled to bits that erin is so much better! preston p. has commented to me several times on his own observations about how she is so much stronger than she was before treatment started. i pray that this is the end of cancer treatment, and the beginning of erin's life as a life-long cancer survivor. :)

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  3. Jill I can't tell you how inspiring your family has been to me and my own family. My sister's and I talk with my mom about Erin's progress and how amazing your faith is. I have had many discussions with my husband about our own kids and what would happen if, heaven forbid, they were to get sick. We know after reading your blog that we have an amazing example of that faith and family. Thank you for showing us how important it is to put family first and teaching me about service. I have to say that I always felt like my life was too busy to include service but I have since changed that opinion and I can honestly say it was soley from reading about your examples of service. I now find many opportunities to help in my family and in the ward. Those experiences have been the most rewarding. I have taught my children to pray and have shown them pictures of Erin so that they know who it is that benefits from our prayers and fasting. I know that Erin's disease has been a huge trial in your family but I can honestly say that Erin has brought blessings to mine. We love you and think of you all often!

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  4. Oh Megan, you brought tears to my eyes. I am so grateful that our trial has blessed so many others. It has bessed us greatly. Thank you for sharing your feelings with me. It makes all the heartache more worth it.

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  5. Dearest Jill and Family,
    You continue to be an inspiration to me every day. I read your blog every morning when I wake up, and even though I don't often comment, I want you to know that your words have great meaning in my life. I have truly been blessed to know you, and to have benefitted from your example in the face of hardship. Few people I have known in my life have the kind of fortitude and faith that you do.

    I continue to hold you in my prayers and thoughts every single day, and I wish you all the happiest of Christmas blessings this year.

    Thank you for being a part of my life.
    Love,
    Anne

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  6. Wow! Jill, that was amazing. A true treasure to read. Thanks for sharing that. I had to giggle about the bran muffin/cardboard bagel thing.

    We never ask for certain trials and we frequently wish them away but in the end we see some amazing miracles through them that we would never ever want to wish away. And it's through those trials that come to find out just who we really are and Who is on our side--the greatest miracle of all. Interesting how the trials of one person can turn into miracles for everyone around there. Thanks for sharing those miracles. I have loved reading your blog. I have been touched many times over by your testimony, faith and miracles. I hope you and John and Erin know how much your little family has come to mean to me and my family. I hope your family has the happiest of Christmases ever.

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  7. And I hope you'll keep blogging. You're very good at it!

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