Three-year-old Faye was diagnosed with Acute Myeloid Leukemia on April 11, 2011. After 135 days in the hospital, Faye was able to spend 3 years at home. On September 5th 2014 she was told that she had relapsed. She was able to achieve a second remission and had a bone marrow transplant on Oct 17th 2014.


Thursday, July 28, 2011

What could you learn in 100 days?

Yep that's right, just this last Tuesday Faye hit 100 days in the hospital. Can you believe it? I know we can't. When this all started the idea of being this far into this seemed like forever away. The other day Nick and I were talking, he asked me "has 3 months ever went faster in your whole entire life?" it's so true, three months (now almost four) has flown by, a lot of it is a blur. Coming, going, switching, and just plain trying to survive.
So Nick and I brainstormed a quick list of what 100 days in the hospital will do for you.....
~ "occluded patient side"= cause for lots of IV beeping
~ We could be mistaken, but we are pretty sure the wheels on the blood pressure carts get louder at night.
~ Fevers are no fun
~ The perfect ratio for sno cones is half lime, half cherry
~ We understand more about blood counts than we would like to
~ There is a button in the elevator that says non stop (supposedly when you push it you can just go straight to your floor, Nick saw someone do it one day) He is pretty sure you really need a badge to make that button work, maybe it's just a coincidence that any time he has tried it works.
~ Faye knows that if she asks to be unhooked to take a bath it usually buys her a couple hours of free time.
~ Faye knows where to find the bags to cover her arm to take a bath.
~ We are so used to being around bald kids, that when we go home and go to the park, and people are giving us a look, it takes a minute for it to register that they are looking at Faye.
~ Every Saturday musicians volunteer to perform around the floor. (either singing, playing, groups or solos)
~ The tricks to get Faye to take her medicine are endless
~ We have heard and learned the names too many different medicines
~ I cannot even begin to count the number of times someone has asked Faye if they can "listen to her" (with a stethoscope) I wish we would have kept a tally
~ We get a lot of practice looking at and counting up to the number 36 ( it's how many rooms are on our floor)
~ We figure we have put about 10,000 miles on our car so far just on trips to the hospital
~ Hiding from and trying to scare the nurses never gets old (according to Faye)
~ Pizza Comes on Thursdays
~ Big Love comes on Thursdays
~ If you want to park in garage 12 you have to come in the morning, or in the evening...come middle of the day you can forget it!
~ We have more stores, and driving times memorized, on the route from our home to the hospital than would care to.
~ When they tell you someone is coming to get you in 30 mins for a procedure, that really means and hour...(at least).  Good rule of thumb is to take the time frame they give you and double or triple it for a more realistic number.
~ No one is going to look out for Faye as much as Nick and I are.
~ When there is talk of you going home for a few days, don't ever plan on anything until you are loaded up, and Faye is sitting in the car.....and even then you are not promised a stay home as long as you would like.

That last one is especially true right now.  There has been talk of us getting to go home today but we woke up this morning to non rising counts.  They are holding but they didn't go up from yesterday to today. So we are sitting in here for yet another day. Its okay.  Like we keep saying, as long as she is healthy and happy...we will wait! But hopefully by this weekend we will get to be home for a week again! Then round four here we come!

The other day Faye says "look mom a helmet" I looked up to find this:

Balancing on one foot, while doing her mouthwash.....multitasking is not a problem for this girl!

All the practice riding her bike....first it was no hands, and now she can even carry things while riding along!

Talk to the she old enough for this yet? And also as if she doesn't have enough hats.....that is a bowl on her head!

But all in all..being at the hospital for 100 days although no fun, this girl has made the most of it.....

She is the one that keeps us all going!


Sharp Family said...

Wow 100 days!! I'm sure you're soo glad you've already come this far!! How many rounds of chemo does little Faye need? Also, is she going to be getting a bone marrow transplant? Just wondering! HOpe all continues to go well for your family and you get to go home!! Lots of prayers!

Lark (SparkyLarky)@ Lark's Country Heart said...

To me 100 days has be slow.
And yet I make sure I check on Faye and the family every day to see if a new post is up. The Meldrum Family , and Faye are now a Common word in the Harrington house hold. To think I have only "known" you for 100 days seems unlikely. So I AM greatful that the 100 days for your family have flown by!

Prayers are always sent for you!

Piano Mom said...

100 are getting so much closer to the end. Erin was in for 146. I will start praying for her counts to recover so you guys can go home. The last week of each round always seemed the longest. I'm sure right now you need that recharge of all being together in one house, it will happen soon. Those counts always surprised us. Good luck! We love you guys!

Eric and Jenny said...

100 days I can't believe it!

I am so glad it's flying by, busy is good I guess. I so hope she gets to come home soon, I can't imagine how great that must feel to have all of you together at home. Hope tomorrow there is some really great news!

Dan & Staci said...

Wow 100 days...what a blessing that it is flying by for you! We love you guys so much and thanks for posting the pictures and comments... it is so great to hear how she is doing.

Workmans said...

Wowzers! I'm glad it has gone by fast for you guys. We miss our Meldrum famlily!! Faye is as cute as ever. I hope things turn around and she can come home soon. Love you guys!

Marie Steele said...

Glad to hear that you are almost ready to go home! Also, that you are more than half way done with treatments. Watching those counts can get frustrating. Faye is such an amazing little girl. Her spunk is definitely a good weapon against AML. Before you know it, she'll be all through with treatment!! HOORAY!

Thanks for your recent post on Rachel's blog. What a small world we live in, eh? Have a great time at home. Hope today is the day!

Isabel said...

Im glad it went by, specially since you spent it most of the time at the hospital! She is a very strong little one, and an inspiration! I really hope she can go for a WHOLE WEEK! You guys are an amazing family!

Holly said...

Y'all are wise, amazing people!! Including Faye. :) So glad you got to come home for a little bit.