Wednesday, September 26, 2012

A Diagnosis


No one when can sleep when their child is sick.  Amy slept crappy at the hospital, and I slept crappy at home, just contemplating the most terrifying unknowns.

Sam and I had nothing on the docket last Friday.  And sitting around the house was not working for us.  I was playing Songpop on fb like a maniac, checking the entire family's facebook statuses for any and all words on how K was doing, and twitching with the desire to be at the hospital.  Sam was making me nutsy, probably wanting any kind of attention at all, because I was so clearly distracted.

My friend Melissa hopped online asking if I'd heard any news, and I told her how antsy I was.  She offered to borrow Sam so I could get down to the hospital.  Wahoo!  So we met at Target, so I could pick up a couple snuggly odds and ends for Kaylee.  Christopher had been very worried if Kaylee had "what she needed".  He remembered to me how Emily had brought him a bag full of things he needed like Superhero books.  I assured him that we would make sure Kaylee had everything she needed.

I may have gone a little overboard.  

I remember nothing. 

But there was a girl who was pretty happy to receive our Care Package.  

It was almost lunchtime by the time I finished shopping, and gave Sam away, so I grabbed Eric from work on the way.  We both had so wanted to be there, so he got to visit on his "lunch break". She was doing so well after her procedure.  They had given her conscious sedation, for her bone marrow biopsy, and she was pretty floopsy, and a little sore, but overall doing very well.  And smiling!  That was the best part to me, was that she was smiling and laughing at all the normal silly things, just like normal Kaylee.  And she was snuggled up with the blanket I made for her when she was little.  For some reason just seeing her like that, I got this feeling of peace, like everything was going to be ok.  We knew at that time it was cancer, and the had gotten some initial bloodwork back, and they were pretty sure it was leukemia.  We just didn't know what kind.  Apparently there are lots of kinds.  We had to wait a while to find out what kind.  
We were asking her if she'd gotten around the hospital, you know Eric and I, we KNOW the hospital, so we offered to take her around to all the 'hot spots' like the Raggedy Man gift shop, the library, the Ronald Mcdonald house, the cafeteria.   She popped on her new snuggly slippers, and we threw her in a wheelchair and took her for a tour.  

Her favorite place?  The great glass elevators in the lobby.  She was so sweet, sitting there watching them go up and down.  We noticed we could see our reflections in the bottoms of them, and we were laughing and making silly faces.  It felt good.   

This was my favorite picture, her laughing and pointing up.  I know she's pointing at the ceiling where the elevators are headed, we were playing around guessing where they'd go, but at the same time, it's like she Knows who has her.  God has her in his hands, and He's going to take good Good care of her.  

We left about 2:30, somehow Eric had snuck off for a 3 hour lunchbreak.  It really is a black hole in the hospital.  Not much different from the "black hole of cuteness" days when Chris was tiny and in the hospital.  Kaylee is a black hole of cuteness of her own, and it's very easy to spend the whole day with her, I didn't want to leave.  

On the other hand, there was a large part of me that just wanted to snuggle up with Sam and take a big fat nap.  So we went home, and did.  Well, he took a nap, I couldn't sleep, because brother came home, and Sam didn't sleep long either.  Too many ants in our pants.  Just as we were trying to figure out what to do with our evening, news came through.  It was ALL - Acute Lymphoblastic Leukemia.   

Thank God, Riley doesn't mess around. They already had a tentative plan before they even got the diagnosis.  Since they knew it was cancer, they were planning a most likely to have surgery the next morning to put in a portocath, under her skin by her clavicle, so she can have her chemo directly connected.  And while they were at it, and she was out, they wanted to do a spinal tap, get some spinal fluid to see if the leukemia was in there, and start the chemo right there for the first round.  She is looking at weekly chemo for like a year.  

They don't mess around.  There's no time for freaking out, What are we gonna do?  No, there was a Plan.  Frankly, I got good vibes from every staff member on that ward.  They were kind, funny, and yet, they had a plan.  No one was taking this lying down, there was a plan of attack lined up and they were going to kick this cancer's ass.  Oddly enough, that was kind of comforting.  
We didn't talk much in depth, just had a really nice visit, talked about the present.  And that was all that we needed.  
Mom and Aunt Teri were visiting so Ryan and Amy could get some dinner, then they came out our way, we decided since Aunt Teri was visiting, that it just be right to all get together for dinner.  I think we just wanted to spend time with our family.  We met at Boulder Creek, and we had just gotten seated when it started to rain.  Then it went beyond rain, and started to hail.  So much hail it looked like snow.  

I was glad.  At least if the world was falling apart within our family, it only seemed fitting that it look like it was falling apart outside.  I couldn't stomach a pretty weather day, notwhile Kaylee is in the hospital.  I want God to be as sad as we are.  I wanted the weather to reflect that.  Oh yeah.  It did. 

But as frustrated and helpless as we'd been feeling, there were Blessings too.  The kind she has, ALL has one of the highest worldwide cure rates.  And Kaylee is at Riley, one of THE Best Hospitals in the world.  And they weren't messing around waiting on diagnoses, or tests.  They were like, Bam Bam Bam.  Get her fixed!  And they have a plan!  Saturday she was to start 5 different meds, a mix of things, chemo, steroids, anti-nausea, a whole cancer killing cocktail.  She may be doing this for a year or two, but she is going to kick cancer's ass!  Her other grandma even reported that she was saying how much her teacher at school was going to miss her because "I'm her star pupil!"   And she was already considering the many different kinds of crazy hats and wigs she can wear.  She sounded so upbeat and positive about this fight, you could just tell that God was right there with her.  You could feel it in all the prayer requests circling over the internet.    God and Kaylee are fixing to do some amazing things.