Nash Family Blog

Not as good of a morning

Leah was not feeling great this morning but we have determined it to be a very long day yesterday and the 4 chemos that she got yesterday.  After she went back to bed this morning she woke with a better attitude and even managed to get down her steroids with a smile.  She still isn't feeling great but we are on a 5 day pulse of steroids so that is to be expected.  With morning meds over we will have 4 different meds to take tonight.  

I had noticed a few days ago that Leah's eyebrows had a blue/grey tinge to them.  Well at clinic yesterday I noticed that they aren't blue/grey, but the hair had fallen out and she had a little eyebrow stubble.  It gave the illusion of a blue/grey line.  Funny.  Ok, she doesn't feel well so I'm going to go get her settled with a show on mommy and daddy's bed....

The Beginning of the End

Well we got to clinic today and Leah made count.  That means.....WE'RE IN MAINTENANCE!!!!  It's been long awaited and a difficult journey but we have gotten to Maintenance.  This is the longest but last phase of her treatment.  Leah asked me tonight "mom, what comes after maintenance".  I smiled and said "baby, you're done".  That is a good feeling.  So in short, a long phase (about 20 months or so), several types of chemo each month but most meds done at home orally.  Leah has learned to swallow a pill (she practiced with mini m&m's) and tonight took her first dose of oral Maintenance chemo by swallowing a pill!  She swallowed the first pill and then was so thrilled that she did it that she ran through the house screaming "I swallowed a pill, I swallowed a pill!".  I'm so proud of her.  She is an amazing little girl.

I'm going to go relax now for a bit before bed.  I think all the kids are asleep.  I've added some extra pictures to The Kids - April 09.  Check them out.  There were some really cute ones lately.

Goodnight and God Bless.

Quickie

Just a quick note to say that we are doing well.  Leah has stayed healthy and we head back to clinic tomorrow.  We'll start Maintenance if her counts are good enough but I anticipate that they won't be.  

We've been enjoying the sunshine and blowing off all responsibility to play outside.  Rain sets in tomorrow I think so there'll be plenty of time for work soon.

I'll post more after clinic tomorrow.....goodnight.

OH YEAH!!  I'm on Facebook!  Check me out - Sarah Nash.

Spring has Sprung

It is absolutely beautiful outside.  It makes me crazy that the kids need naps and can't just play outside all day but little bodies need rest I suppose.  But after naps....back out we go!  I love the sunshine, the warmth and the breath of fresh air that it brings to the house and our attitudes after being cooped up inside all winter.

We had a nutty day a few days ago.  The condensed version:

*Isaac washed his hands, which is fine.  Except he plugged the sink up.  "Mom, heeeeelp" brought me running to find water overflowing the sink and spilling onto the floor.

*Leah was left to play in the tub for a few minutes.  I came back to find that she had removed the top off the bottle of conditioner and dumped a large portion of it out into the tub.  She was rubbing it all over.  Her explanation: "I wanted my skin to be soft so I was rubbing it in".

*That same day Isaac couldn't get to the potty to save his life.  One of his last trips he nearly made it but peed all over the floor right in front of the potty.

*I left the dishwasher door open for a moment and stepped away.  When I came barreling through the kitchen a few minutes later I failed to remember - or notice - that the door was open and banged my shin into the corner of the dishwasher door.  It hurt.

It was one of those days where you just have to laugh.

It has been a good week despite Leah's low counts.  Her spirits have been high and we have had lots of fun doing housework and playing together.

Here are a few more pictures from the last few days:

Still Low

Quick update on today's labs....

Leah's counts are still extremely low.  Her ANC is only 84 (up from 50) and her platelets not increasing, but are holding.  Her blood counts have started a downward trend.  All of this, they tell me, is "normal" for the intense chemo that she received during the Delayed Intensification phase.  They are not worried yet about the counts.  We will recheck labs on Friday and they expect that she will need another blood transfusion.  You know, no matter how many times the doctor or nurse reassures you that this is "normal" it just doesn't seem to make you feel any better.  It's just a reminder of the seriousness of the illness. 

Springtime

Leah & Mae posing in front of the neighbors tulips.

Aaron is all smiles.

Isaac driving Maw-Maw's car.

Concern

Leah's labs yesterday revealed that she has almost no Neutrophils.  Her ANC was only 50.  (This means that she has almost no ability to fight anything off.)  Please continue to pray that she will remain healthy until her body rebounds.

Round the House

So being on lockdown here not much is going on and I thought I'd post about a few cute / quirky things that have happened lately.  Also, I've uploaded some pictures to a folder in the sidebar titled The Kids -  April 09 for anyone who is interested in that type of thing.

So after Leah got her platelet transfusion, we came home and had lunch and then she went down for a rest.  When I went to tell her that she could get up this is what I saw:

Reaction to the transfusion?  Could be interpreted that way in a dark bedroom, but no.  She spent her rest time coloring her face red with a marker.  And her arms from the elbows down....  And the palms of her hands....  Yeah, she scared the beans out of me.

Isaac's new thing is "I do it myself".  I guess since he's going potty that he's a big boy now and needs to do everything himself.  He's starting to try to dress himself among other things.  I'm not sure I'm ready for him to be that grown up.

Not much else is new.  Check out the pictures!

Got Platelets

Had the transfusion this morning.  Her platelets were at 18,000 this morning and her ANC has dropped to 199.  We are being extremely careful right now.  We'll do labs again Friday morning.  She is perky and very happy.  For that I am thankful !  

Had Labs Today...

And Leah's counts are dropping still.  She is neutropenic (sp??) with an ANC of 367.  That basically means that her ability to fight off anything is extremely low.  This is the kind of low we have not seen since she was first diagnosed.  We will be doing alot of hand washing/sanitizing, disinfecting, watching for fever and staying in lockdown at the house.  Her platelets have dropped to 27,000 which is also extremely low.  We'll be heading in to clinic tomorrow for a platelet transfusion.  However, she is feeling well and up playing/happy, the Ara-C is done and she gets her last dose of Thioguanine tonight.  Her little body will get a short rest and have time to rebound.  Hopefully she'll rebound by the 28th so that she can start Maintenance.  Otherwise we'll be delaying the start of her last (and longest) phase.  Please pray that she can remain healthy while her counts are so low.