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.

Thursday, September 23, 2010

Thursday Night Ramblings

When I arrived to my "shift" with Erin today she greeted me with a big hug around my leg.  What a sweetie!  We played hide-n-seek.  Lots of it.  We have been playing hide-n-seek for 4 months in a hospital room and today I am proud to say that I found a hiding place we have never used before.  The closet.  It's a very small closet, not really big enough to call a closet.  It's more of a nook.  It is just to the right of the TV and is triangular in shape and I can just squeeze in enough to still close the door.  Erin thought this was the best hiding place.  She told me to hide there each time it was my turn and then she hid in the corner, counted to three, and covered her eyes, only her eyes were open and her hands were more like visors on the sides of her head.  When it was her turn to hide, guess where she hid? 

The nook.

We had three fabulous visits today.  Btw, Erin's ANC is 1500 (as of Wednesday).  We'll get a new ANC reading tomorrow morning.  First, we had a visit from Amanda (mom of Amelia who has ALL) and her mother.  It was very nice to see them for a few minutes and it really brightened the day to have someone pop in unexpectedly.  They also brought me a pair of comfy Halloween socks (if you know me, then you know I love silly socks).  Later Cris visited, and of course Erin was ecstatic!  He was also so kind to play with her on Tuesday evening while my mom did a city council meeting via phone.  He always gets Erin laughing so hard - I swear she laughs harder with him then she has ever laughed with me.  Lastly, as I was forcing a teeth brushing on Erin, one of our new friends, Chelsea (mom of Cami who has ALL) visited and we had  a good talk about Leukemia and how it has changed our lives.  It has been a successful and busy day!

Erin is doing very well.  She is confined to her room because a test was done that showed she is positive for Rhinovirus.  The rhinovirus lives in our noses, hence the name.  But, seriously, I have seen some big noses in my day, but never one as big as a rhinocerous'.  It's such an odd name. 

As stated in the title of today's blog post, this is a rambling post.  Forgive me if the comprehension is difficult.

I love the Doctors.  They are so knowledgeable and they know how to convey that knowledge in a way that I can easily understand.  It is wonderful that they never seem to get too worked up or get overly concerned about little things.  And, so far, they have known all of the answers to my questions.  Last week, Dr. Verma came to visit Erin.  She said that she was actually working in the Lab that day, but she had heard Erin was here and she just really wanted to see Erin laugh so she stopped by.  What a kind gesture! 

I like to see the Doctors daily, but sometimes we are in the care of the Physicians Assistants.  They are helpful and they are always available when we need them.  It's not quite the same as the Doctors though.

I apologize in advance if you are currently sweating your way through medical school, but some of the Residents are the funniest.  On our last chemo round, I had a Resident fill me in with a really awful scenario (like, really awful) and in the corner of my eye I saw our nurse roll her eyes.  Then, the Resident examined a rash on Erin, left the room and I happened to look out the window on our door and I could see the Resident sitting at the nurse station using google images to find pictures of rashes. 

I really truly admire our staff and their dedication and support.  Seriously!  I don't want to sound flippant about the way that the medical profession works.  I know that these hard working Residents (and their eagerness to show what they've learned) will one day become the amazing skilled doctors that I appreciate so much.  We all have to start somewhere and we're all working our way through this life, learning as we go.  It's been a good learning experience for us.  I have learned that a second opinion is always worth it.

It reminds me of when I was 16 and I taught my first piano lesson.  I often think back to all the wrong things I said or did. How I wish I had the knowledge I have about music now, back then. I hope that people haven't been offended about my mistakes. 

Since my first days here at Primary Children's I have tried to have a good attitude with the staff.  In our first week after diagnosis I happened to be in the laundry/kitchen and there were 3 parents in there ranting and raving about the poor care they felt they were receiving.  As I sorted my laundry they talked about how they had told off nurses and how they were going to keep on giving the staff a bad time (there are some words that they used that I cannot repeat).  It was really a downer that they felt that way about the staff.  I made a commitment then and there to always be appreciative of our care, even if someone messed up.  I have always prayed to know which course to take on important medical things.  There have been times I have laughed about some of the care we've received (like googling images of rashes) because I know that ultimately everything boils down to the will of the Lord.  Erin's life is in His hands and I truly trust Him to place us in good hands here at Primary Children's.  It is a comfort to know that He is the one to whom I can trust in.

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