Wednesday, October 21, 2015

we have a teenager?

In case you've missed the story:

When we dreamt about having Emma, our dreams didn't include open heart surgery at four days old, or a diagnosis of a rare, fatal disease that causes bone marrow failure and cancers with no cure ultimately.

But, that's still what happened:

But, we did get some healthy years between her diagnosis and the start of bone marrow failure.

And, we treasured those times, knowing the clock was ticking and soon Emma would be very sick.

Despite our best efforts, Miss Emma entered mild bone marrow failure that progressed to severe bone marrow failure.  She required red blood cell transfusions, transfusions of platelets, and hospitalization when she became ill.  Each illness plummeting her deeper into bone marrow failure.  

No matter what we tried to do to help her, we were soon facing the reality that she needed a bone marrow transplant to survive.

We traveled almost 1000 miles from home in an effort to save her life.  It was a long process and a lot of things went wrong.  She had a side trip to a hospital in NYC for experimental treatment to try to cure her of a life threatening post-transplant lymphoma that she had developed.  

But, finally she was able to go back home, living life in isolation, waiting for her immune system to become functional.

And that's where we've remained for the last two years.  It's almost as though the ebv-lymphoma hit a "pause" button while it was doing it's thing, as this can be a common problem after something like this.

Thankfully her body has continued to heal in other ways - despite losing her hair randomly a second time, her platelets and red blood cells are excellent now.  Her skin has settled down and her liver is recovering.  Her kidneys are still teetering on falling out of normal ranges of function, though.

There were many times that we wondered if we would get to have Emma here with us as a teenager...

But, lookie, here she is:

When she realized she was going to be a teenager, she giggled a lot and kept saying, "I can't believe it.  I'm going to be a teenager!  I wonder how I'm going to feel."

I think she thought something magically happens and changes you.  hehe.

She's a very tiny 13 year old.  She's about the height of an 8 year old and about the bone size of a 6 year old.  Her voice is very tiny too.  So, it makes it all the more unreal that she's going to be 13!

A couple weeks ago, she told me that she wanted a Teenage Mutant Ninja Turtle birthday party, but it wasn't until the day before that she told me she wanted a chocolate, banana, and strawberry cake with a princesses on it and blue frosting.  I had been planning something different, so this was a bit of a surprise. 

There was no time to order a cake.  No time to do much planning for a cake.  Just time to *clears throat*...whatever this was...

While I like to make cakes from scratch, this time I opted not to.

I enlisted the aid of the other children.  

Okay, I didn't really.  They just came and forced their aid upon me.  

Oh, look!  It seems like it's going well, right? ^^  

Not really. 

This is more what it was like.  There was some counter surfing:

And, whatever this was:

But eventually the cakes were in the ovens and cooking:

I took them out, let them cool, frosted them, stuck them together, and then we went to bed.

We thought about our little Emma and the life she's lived and the fact that we've made it all the way to 13...


We're pretty sure Emma went to bed, thinking, "WHAT THE HECK!  I'M GOING TO BE A TEENAGER!"

In the morning, we got up, did some shopping, then set to work on her cake. 

What does a cake look like that expresses our gratefulness that she's still here?

Well, we don't really know, cause this is what we ended up with:

I feel like this is where we pause the movie, rewind it a bit to explain what happened:


It started with Violet.  She's never used a bag of frosting to decorate a cake.  You can see the amount of focus she used while decorating.

Then there were these two.  Considering they still think they are cats half the time, I'd have to say that this is what a cake looks like when two cats decorate it:

And that's how it got to look like this:
Can you see Elsa stuck under a pile of "snow"?  Yeah, I can't really either.

It was the cause of much giggling and laughing.  And technically, she got what she wanted!  A blue cake, with princesses on it (under blobs of frosting), and different colored layers.  

I didn't get a photo of her face when she first saw it, but it was pretty funny.  (Before you feel too sorry for her, she's participated in the making of cakes for her siblings, so she couldn't have been too surprised on the end product.)  She was happy with it and thought it was really yummy!

We surprised her with inviting her best friend, and her family, over for the party.  (She's permitted a friend over via the drs.)  She thought that was pretty exciting!  It was that same friend that gave Emma a hand-me-down dress that Emma loves and is wearing in the pics.

It was fun listening to the kids laugh and play and thought it was so cute how Emma and Ella sat by each other at the table.  (Have I mentioned Ella always wears her swimsuit?)

Then it was time to sing her Happy Birthday, which the kids did so well:

She managed to blow them alllllll out:

And, here's a happy Emma:

The kids had a little balloon fight:

Then it was time to open presents.  She got some new clothes, a special new doll, marker making set, and some other stuff.  

When we were finished with that, they did some fun craft painting:

Meanwhile, this is what we adults did...talked a lot to these two people!  (Our old neighbors...we found his expression here quite amusing.)

Emma's new doll, Alicia.  (Emma's medicine was messing with her eyes this day.  She had trouble keeping them open for the pics...super sensitive to light.)

A little while ago, one of Emma's best FA friends, named Alicia, died.  It hit Emma pretty hard, and she was pretty sad over it.  She told me that she really wanted a doll like Alicia.  So, we found this American Girl doll for her.  

She sat for hours holding her, brushing and braiding her hair.  She told me she really misses Alicia and loves having this doll.  It was hard to not cry while watching her.  We miss you, Alicia!  

The kids enjoying some of the lollipop from her birthday cake.

It was a good birthday.  We had a lot of fun.  I couldn't help but think of our other transplant & FA families that no longer get to do this because they've lost their children.  While waiting for Emma's immune system seems long and is hard, at the same time, seeing what other families are going through, we treasure this time.  We know her illness is going to rear it's ugly head again and one day she won't be here, something I've been struggling with that reality again, but hopefully that will be in 80 years.

We love you, Emma!  We're so grateful we get to be your parents and share our lives with you.  Thanks for being so awesome and a wonderful big sister.  <3