Friday, June 17, 2011

A day in the life....

I mentioned the other day that Gabby had a 9 hour appointment on Tuesday.

This is kind of medical-y, and detailed, so feel free to skip down to the pictures (or skip down to Five for Friday, 'cause there's no running or cupcakes involved here).

Gabby has Acute Lymphoblastic Leukemia. There are 4 pieces of treatment for ALL - Induction (which included The Steroid), Consolidation, Delayed Intensification (which re-introdueced The Steroid), and Maintenance. We're in the midst of DI right now. Someone warned me, back in February, about DI - that Consolidation was okay, but then there's DI. And it pretty much sucks.

He was right.

Luckily, Gabby was not considered high-risk (nor was she low risk, but most kids aren't), so our experience with DI wasn't as bad as it could have been.

I try, really hard, to keep a balance between recognizing how serious her condition is - she looks okay, and acts okay, most days, so it's easy to forget sometimes - and trying to maintain her "kid-ness".

I'm very lucky, that she has a dad that was able and willing to stay home and take care of most doctor visits, and that I have a job willing to let me take whatever time off I need.

Gabby was scheduled for nine hours at the infusion center (OPI), to kick off the last half of DI.

When I saw that, I was sure it was an exaggeration. Positive. How is that even possible, really? Nine hours? No way.

The H planned on going by himself, but that sounded dumb, so I took the day off to go with them.

Every OPI visit starts with The Cream. It's just a numbing cream, and it works pretty fast, so in theory she doesn't feel anything when her port is accessed. Still, Gabby knows exactly what it means. The Cream means, her port is getting accessed. She doesn't really dig that.


One of Gab's new quirks, is that she's extra particular about what she's wearing. She likes to "accessorize" herself... and I'm guessing it's just a part of her trying to hold on to whatever control she can. All of these things happen TO her, and she can't stop them... but she can put on a headband, followed by a hat, followed by a hood.




....first kid in.

She knows the routine - she walks straight up to the reception desk for her bracelet, stamps our ticket for parking validation, waits, then off to check weight, height, and vitals...



(this is her favorite person at OPI - they have a routine down)


Her BP was pretty low, so double checking....


Off to the room, then port accessing time....


So, I've tested the cream, on my hand, and it does numb... but to be honest, I'm not sure how much of this she can feel. She certainly ACTS like it hurts, but I don't know how much it really does. It took me awhile to grasp what the port is, but here's a link that explains better than I could. Right after I took this, I had to hold down her legs. She tried to snag that needle straight out of the nurse's hand.

Then, the procedure room. Gab doesn't really dig the procedure room, either.


Today's procedure was a lumbar puncture, with intrathecal chemotherapy... basically, they inject chemo (methotrexate) into her spinal fluid to treat any leukemia cells hiding there. She's given some sedation, and we're kicked out.

Just enough time to run down to the pharmacy and drop off some new prescriptions.

She's pretty out of it when she first wakes up....


True, that happened.

All of that, by 9:45am.

After she rests, and wakes up a bit, we're sent back to our treatment area.

Turns out, it was true - nine.hours. One of the drugs - cyclophosphamide - she has to be thoroughly hydrated for. Nine hours included IV fluids, testing her urine, more hydration, more testing, more hydrating, more testing, before the chemo could even be administered... followed by MORE hydrating.

All that, for this...


Sat around. Watched TV. Tried to get her to play, but she was having none of it. Brought her chicken nuggets, which were a winner. Watched more movies. Sat around.

Lily, one of the therapy dogs, came for a visit....



.....last kid out.

We got to OPI at 7:50, and left at 5:15.



Rose @ Eat, Drink, and Be Meiri said...

Gabby is an amazing kid. Man.

Anonymous said...

What an amazing little girl!

XLMIC said...

That's a long, hard day for everyone :( This is so rough…you are real survivors and she is such an awesome little trooper.

Lesley @ said...

What a brave Princess.

theAlmostRunner said...

I am so glad she has such a strong spirit. And that she got to visit with Lily. What a day.

Sarah G said...

Fellow Disney Princess runner here. I've been following your story since around the time of the Disney race...I pray fo ryou and Gabby every day. She's such an amazing kid. And yay for therapy dogs!! one of my dogs does that also, I don't know who has more fun, Morgan the dog or the patients. Hugs from South Dakota!

Lindsay and James Cotter said...

my goodness, she is such a trooper! so strong! Please send her a big hug from me please. And some more chicken nuggets.

BabyWeightMyFatAss said...

LOt's of gentle hugs for Gabby and you!

Chris K said...

This was an amazing post. I hope I get the honor to meet this amazing cutie in Oct. Please bring her to the LB Expo.

Lulu and Ruby said...

y'all are very strong - all cancer fighters and their families are such troopers!! Message me your address as I am totally with Gabby on accessorizing and I make adorable little headbands - I want to send her one! Keep on truckin' over there!! xo

chacha said...

She is such a trooper. I can't get over how well she handles it - better than most adults would, I'll bet.

She looks so cute in that mustard yellow hat, btw.

Pam said...

That little booger is an absolute rock star.

An Indoor Girl said...

What a brave, strong girl! Hugs to your family.

RoseRunner said...

thanks for sharing this. I don't know when the last time was that I read a blog post this closely or carefully...this is all a situation that so many of us get to know nothing about, so it's 1000% new to me.

Doesn't sound fun at all, but man it is incredible to see her adapt to the routine. everyone must love her there

JessiePants said...

I know others have said it, but I appreciate you sharing this. It makes me realize if I think I've had a bad day, it's nothing because what you and that little lady go through each day as well as so many others make my bad day just silliness. Thinking of you guys and hoping that it was a good weekend.
Much love to you all!

Molly said...

wow, Gabbby's amazing, you've got a great kid there. I would have tried out that numbing cream too.

Fruit Fly said...

I bet some day some parent is going to find this when they are searching for information, and I can't imagine it not making them feel a little better. I mean look how great she handles this! She knows her routine, and while she doesn't like it, she sure handles it so well ~ and with flair! And the dog ... that is such a good idea! I mean racing isn't anything at all like this, but just seeing dogs when I run makes me feel better. I know if I had to go through anything big at the doctor's office I'd love having a dog around!

Lovely post. Sure it was serious and medical, but it was really informative and I'm glad you shared it with all of us!

Alene said...

Wow. What an amazing kid. She looks like she is more patient than a lot of adults faced with a 9 hour appointment at our infusion center. I am so glad you are into maintenance, and she is doing well.

Karen said...

I went through a lot of this same stuff (the cream, the port, cyclophosphamide, therapy dogs) at 20 years old, I can't imagine how it would have been Gabby's age. What a little warrior princess she is.


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