Our first "long trip" to clinic

So we officially made our first long 5 hour each way drive to clinic. Gracie did really well. I was proud as I always am. Grandpa drove us and Daddy stayed home to work monday even though he doesn't like having to miss appointments. And Grandma and Julie stayed home with Tyson. She took over a two hour nap on the way up and when we got to the hotel she even pullled the suitcase herself:) Cute girl!  We acted on Sunday like we were on a mini trip and just for fun.  So we took her swimming that night and had a little fun in the room that night.  She slept great!  Went down a little after 11 and i woke her the next morning about 7:30 to get ready to go.  She wasnt as thrilled about that...but seriously she was AMAZING at clinic!  I didn't even give her valium because I was worried about giving it on her empty stomach.  She did however get either car sick (which she gets sometimes) or an anticipatory nausea on the way to clinic because she was wretching and a little clear stuff came out but there wasn't much since she hadn't eaten for long.  It was so sad when after she said "I not throw up Mommy" and was very proud of herself for "not throwing" up which she basically did just had nothing to throw up.  Only someone as awesome as her things that way. 

Here she is gearing up for the big day with Grandpa and Grace doing the usual. 

Clinic Stats:

Height: 3' 2.6" (WOW, that's like 2 1/2 inches in 12 weeks)

Weight: 38 lbs 12.5 oz

WBC: 1.5

ANC: 550 ( i was pretty bummed about that one-we just keep playing with a low ANC at 500 they stop chemo) She was so borderline Dr L decided she would play with the protocol and lower her oral chemo dose to 75% I said please don't send us back home to go back in for a fever and low anc so we get admitted like last time.  She blamed it on our new home (of course she wants to see Gracie all the time...who doesn't she's so cute and wonderful!) 

Hemoglobin: 11.7

Platelets: over 200,000

She rocked her port getting accessed.  No crying just sheer bravery.  She watched her movie and played with the animals we had found in the playroom.  She even held onto my very special necklace that says "one day closer" from my amazing friend Ashlie (Thanks Ashlie, you are the best).  It was so sweet when she held onto it...b/c that was one day closer i really wanted to have over.  She just did well.  She did well with sedation and spinal tap and even gave Dr L some good luck stickers on her "blue dress with stars".  Had to write that in every time she goes in for a spinal tap we talk about Dr L's blue dress with stars on it and Gracie decorates it with some stickers the anesthesia nurse gives her.  This time it was 2 tinkerbell and 2 jasmine stickers.  She talked with us about them until the propophol put her out and for I think the 15th time I laid her on the table and walked out of the room with empty arms.  As always I go back in to find her well thank the heavens above for these wonderful Dr's and nurses that take such good care of her.  She was pretty funny for a bit after and wanted to eat and drink and I could tell she could see straight because she was swiping trying to grab the graham crackers poor thing.  She wanted to get up and walk and scared me a few times trying to take off while wobbling.  But what would clinic be without a few good scares?  One of the best things was that while she waited for sedation she got to go see our friends Jack, Hannah and Ashlie!  So lucky they could schedule their appt to be there at the same time!  It made it so much better:)  After we even went to a little park behind the hospital and the kids played!



 

Of course the drive home wasn't quite as fun for Gracie after getting her IV and intrathecal chemo (spinal tap) but she was a trooper and got through it pretty well.  Sadly that night at home was pretty brutal.  she was up most the night so so were we she ended up with croup and wakes up totally hysterical b/c she gets so scared.  I can't decide for sure what scares her most I think she's scared she has a hard time breathing, but also prob scared b/c she knows when she gets "sick" she goes to the hospital and every ER trip has been unbelievably traumatic for her.  Twice she's gone to the hospital with croup and it hasn't  been fun that's for sure.  So the pictures below aren't accurate for the amount of sleep we've been getting but we finally upped her dose of valium at night and started giving it to her before bed and that helped last night.  She slept much better last night.

Gracie and Daddy napping the next  day....she was exhausted and so was he!

Gracie sleeping with mommy the next day...again both exhausted however Mommy is a miserable sleeper while holding anyone.  But I do enjoy so much cuddling and holding my little loves while they sleep.  We are half way through steroids as of this morning and hope the rest of the week flies!  Sadly poor little Tyson boy landed himself a cold today...hmmm I'm pretty sure he picked up Gracie's but she just happens to be a croup girl and he happens to get fevers not croup.  So we'll see how the week pans out!  Hoping we get some sleep tonight!