Saturday, March 24, 2012

The Hamburglar Stole My Wi-Fi!!

My excuse for not posting??? The hamburglar stole my Wi-Fi...seriously!
We made it to Ronald's House last Monday.  We listened to the 7 rules spiel and then made our way to our very, very, very small home for the next 66 days.  Our room was literally 12'x12' with two twin beds, a small dresser, a frig for meds, a bathroom, a community kitchen and NO Wi-Fi.  Colors?  Hospital colors...blah beige and blue and dark with not much natural light.  Eric and I smiled and tried to be positive about our new home, but poor Emilie wasn't buying it.  Emilie sadly perfected her three point turns in our tiny space. We were spoiled at the Memphis RMH and were expecting the same here.  Anyhow, Tuesday was a new day and we had a clinic visit early in the morning.  As usual, our clinic visits are never short. We ended up leaving the hospital at noon, returned to our room and Emilie took a nap.  Her energy level is a little low and naps have been the norm around here.  After she woke up, we talked about our accommodations and focused on being grateful for having a place to live so close to the hospital and being able to see our family daily if possible.  We decided that we would make our new space our own, bringing comforters from home and using some handmade art.  It would all be okay.  Tuesday night as we ate in the small dining area we had a visit from Art the Clown.  I really didn't want any company, especially a clown.  Art the Clown is a retired pediatric dentist who uses humor to bring smiles to sick kids at the RMH and at various area hospitals.  Turns out, we do like clowns, we like them very much!

Wednesday was spent investigating our new digs.  We are in the Garden Wing, which is actually the isolation wing for immunocompromised peeps...that's us.  It is a wing with 6 rooms a small community kitchen and it's very quiet. We might see 1 or 2 people a day, but our window looks out onto a lovely garden area with cute little birds and crazy black squirrels.  Thursday was another clinic visit.  Early arrival and another late return.  Emilie settled in to watch the Muppets and about half way into the movie, we got a phone call from the front desk.  It was a call to inform us that a suite was available to us if we could pack our belongings and move within a couple hours.  Are you kidding?  (Back in February I told our social worker that we would like to have a suite, so she put us on the waiting list but I really didn't think we would get one.)  I packed up in half an hour, waited for Emilie's movie to finish, got our new key from the front desk and we high tailed it to our suite.    Impressive considering my mom and Eric delivered a SUV full of stuff the night before.  Emilie was more three point turns to navigate the space.  Our new digs have hardwood floors, a kitchenette, a table for eating/crafts/studying, 2 frigs (one for food, one for meds), a twin bed, a double bed and a good sized bathroom.  Same yucky colors, but we've since "happied" things up (photos coming once we get some good lighting in here.)  Our view is of the same garden area, but just a bit better with a tree close to our window so we can get a better shot of our critter friends.  Did I say Emilie was thrilled??  So happy, that she forgot that she needed a nap and proceeded to make a shopping list for Eric as she had many meal ideas churning in her head.  Yesterday was spent meal planning and a little napping.  Today we planned on a quick trip to the market for the meal planning, but it was raining and I didn't want Emilie out in the elements.  Tomorrow we are expecting our boys; they are not allowed in Emilie's room, but there is a common family room where we can hang out.  Emilie will be making them cupcakes and pasta...probably in that order.  Signs of increased appetite are good and dessert first is just fine with me.

Our new space is large, colorful and happy and it has boosted Emilie's spirits and decreased her napping time.  We are grateful for the upgrade!!!  Thank you Ronald, now could you please have the Hamburglar return my Wi-Fi?  (It's really not that bad, I'm plugged in via an ethernet cable.)

I almost forgot to post the really great stuff.  Emilie's MRD (minimum residual disease) came back negative, but really negative, like less than 0.1% negative.  AWESOME!!!  They also look at how much of Nicolas' cells are present in Emilie with 100% being ideal.  They look at a bunch of different blood components, but the data point that stuck in my head was the whole blood value and it was 99%.  All the other values were 97% and higher.  Another AWESOME!  After Emilie's relapse, my view on life has returned to a day-to-day view and I'm not looking too far ahead.  I don't know what tomorrow holds, but I truly believe that God loves us and He is in total charge of our situation.  I trust Him completely and surrender everything to Him.  I am also so, so grateful for good results from Emilie's first bone marrow aspirate!

Be STILL and know that I am God; I will be exalted among the nations, I will be exalted in the earth! 
Psalm 46:10


Martha said...

I am so thriled for you and Emilie. Sweet suite!!!
Non-stop prayers continue.

Auntie Vicki said...

Wow, so much good news and so glad the boys could visit. I bet you have your new digs totally Pattied out. (no Martha Stewart needed) you have your perfect assistant with Miss Em. 59 days.........and counting!