Wednesday, February 4, 2009

"My grace is sufficient for you,for my power is made perfect in weakness."2 Corinthians 12:9

It has been a heck of a couple of weeks up here on 4East.A roller coater of emotions.Emotions based sometimes in our own fears but most definitely more so for other families trying so desperately to navigate through this new road they have found themselves traveling.Heartbreaking.I need to take a moment and mention the selfless nurses and PCSA's that work our floor.They gracefully and professionally and most lovingly give to us daily.They flip,how they do it I have no idea,from one extreme situation to another.They compartmentalize their emotions,at least in front of us and balance clinical and humanness seemingly effortlessly.I could never repay them for the selflessness by which they devote themselves to our children and I could never thank them for loving the hardest floor in the hospital so much so that most would say they would not choose to be any where else but on our floor.So any of you darling nurses reading this .... thank you on behalf of Miss Zoey Grace.As for Zoey ... doing her thing.The last few days you could really see the need for fresh blood.Her hemoglobin was down to 7.2 today(normal 11 and above) and that bought us a 4 hour blood transfusion.What a difference some fresh red cells can make.By the time I left this evening she had little rosy cheeks once again.No need for platelets this round.She did drop to under 5 thousand though.Normal is 150,000 to I think around 400,000.So they were scary low.But since she had no active bleeding,nose,ears,gums,we held off.Today her platelets jumped to 27,000 so I think we made the right decision holding off on the platelets.Too many platelet transfusions and the kids can get to a point that they basically become immune to their purpose and trust me,with,God willing, only 2 round left to go,we don't want her to become refractory,or stubbornly resisting their benefit.Zoey continues to amaze us.Truly amaze us.Her strength and courage and resiliency shine even brighter with each passing day and each passing round.She too, seemingly effortlessly, goes about her day.She takes her lead from those amazing nurses I suppose ... or maybe it's the other way around.The rest of us are holding up.Minus a breakdown from Jake tonight.Yes,Jake.My even keel,never sweats it,Jessica clone.My never throws a fight boy,threw a doozy.All over the lunches Mark and I make him.It all started when he figured out he missed hot pizza lunch today.Well it was all over then.He said that he eats the most boring lunches while everyone else gets "good stuff."Good stuff definition:fruit roll-ups,gushers and sour patch kids.Aren't I just the crappiest mom ever?He went on and on and I so wish I had a tape recorder.This all began right at bedtime.At one point I was reading a book called "Muncha,Muncha,Muncha".WELL,you should have heard him "Did you need to read that book ... It reminds me of food.And it reminds me that I will never,for my whole life,ever have a good lunch.Ever."All said with a dramatic voice of indignation and ... a lot tears.I tried not to laugh but ... Joe and I couldn't help it.Jake would find no sympathy in Taylor.I think she said something along the lines of :It was exactly the same for me growing up so oh well."Care to chime in here Jess and Caitlin?Well anyway,for Jake to have a meltdown means he's growing weary of Round 3 just like the rest of us.Day 17 tomorrow.Maybe by the end of next week we can find our way home.Until then we just pray that Zoey continues on this current path.We pray she can stay fever free and that her little body kicks into recovery sooner than later.And we pray for the 4th floor warriors and this week ... never more fitting.The laundry buzzer is sounding and I still have a load or two left.I leave you with a few pictures of the last couple of days.Today the Dodger's came calling.Highlight of a lot of the kids day and dare I say, parents as well.I wish I had my camera going when they were with her.Their publicists got incredible pictures as Zoey was definitely her charming self.They signed a hat for her and left a goodie bag that I suspect the boys will have to fight over.Another highlight of Zoey's weeks have been when the music people come by.They come mainly with guitars and Zoey just loves them.Absolutely loves them.She bounces and moves and smiles and they end up lingering a little longer with her.We also have volunteer readers that come throughout the week and Zoey adores them as well.Books and music.Two of her most favorite things.We are forging ahead.Hopeful and always prayerful that Zoey stays the course.Our faith seldom ever wavers in Zoey's ability to beat this thing.We remain confident that she will overcome this just as she has done every other obstacle placed before her.However,in our moments when we have grown weary and doubt and fear creep in, we ask God to continue to bring us His ever present grace when we most need it.Which,in the case of the last week means: He's been working overtime.


About all of this said...

Heather, good to hear all that!
Thinking of you all, as always.

SammyJo said...

Dear Heather,

you and your daughter and the rest of your wonderful family are doing a great job!

Please allow yourself some weaknesses, the load you have to lift is enormous (and you still have to save up some power for the rest of the trip..)

On Tuesday I met a very close friend of mine who is one of those selfless, dedicated nurses at such a hematologic-oncologic ward for adults (is it the right expression? It's a word-by-word translation, I hope you understand ;-)). Her boss is a very famous Doctor for AML. We talked about the perspectives of their AML patients.

She said that their chances depends very much on the subtypes with some more malicious than the other. But apart from that, she said that the odds are very good for small children. They have a high probability to be completely cured after therapy.

I am sure you know that, but to receive the same evaluation from somebody some thousand miles away might cheer you up a little..

I keep my fingers crossed for you!
Big hug -Alex

The VW's said...

Zoey, you are such an adorable, brave, and precious little thing!!! Looking at your pictures makes me smile!

Our oldest son always complains that his lunches are boring too! "Everyone else gets to make their own lunch and they get to put whatever they want in it!" I just tell him that he should be happy, because obviously he is loved the most out of all the kids in his class, since I care enough to pack a mostly healthy lunch for him! They will appreciate us someday for this!

Thinking of you and praying for you often! Hope that you continue to feel God's grace throughout this difficult time and that you are able to go home real soon!

Hugs from MI,
Alicia and Gavin

Reagan Leigh said...

Ahhh, poor Jake! He just wants some pizza! Can't a boy get some pizza??? Hopefully you and Zoey will be headed home soon so the stress level for the whole family can go back down again. Prayers for smooth sailing and continued smiles for your little one!

Anonymous said...

You all constantly amaze us with your beauty and grace. Thank you to the nurses too -- simple words not enough. Love to Zoey, Go Dodgers! Love and prayers, always thinking of you, Christi Harman

My name is Sarah said...

Hi Heather, This is Joyce. Such a beautiful tribute to the nurses. As I read about Jake, I am so reminded of the significant pressure the precious siblings endure in all this. I just want to wrap my arms around you all. Please know we continue to pray for a full recovery for Zoey and for your dear family.

Caitlin said...

Dear Jake,
I understand that whole wheat bread can taste like cardboard. I know that pita chips/multi-grain crackers/etc. cannot compete with artificially colored, cheesy, delicious Cheetos. Trader Joe's cookies are no match for Double-Stuffed-Made-Almost-Entirely-of-Lard-and-Sugar Oreos.
I dreamed of the day that I would open my lunch box (no, not brown bag like all the 'normal' kids) and see multiple packs of Gushers and Fruit by the Foot nestled next to a can of soda and accompanied by a hearty main course of Lunchables Do-it-Yourself Pizza complete with Rubberized, Nitrate-Saturated Pepperoni, but...
it's best you surrender now.

It's never going to happen.

You are officially and forever destined to be a Whole Foods and Trader Joe's consumer.

Sorry. I feel your pain.


Kati said...


I have been reading your blog for a while now, thanks to Maureen. I don't know what blood type Zoey is, but I used to donate platelets on a regular basis. If there is ever a need, and I was a match, I would be more than happy to donate platelets.

Thank you for sharing your story..both the good and the bad.


stephanie said...

I am falling in love with Zoey more and more each day. Stay strong, you are my hero. As for meltdowns, I glad we're not the only ones. Our Bella had a splendid one the other day because her piggy tails uneven.Pass me ruler with the comb next time. Gods blessings and sweet kisses to you all. Stephanie

Colbert Family said...

Wow. That was so beautifully written and you worded everything so perfectly. I too love our nurses and doctors and often have to hold myself back from hugging them and telling them that I love them (they have become like family).
Zoey is so sweet and I will continue to pray for her and you all. We put her button on our blog yesterday :)
Shelley :)

Michelle said...

Love the scripture...isn't it so true! Isn't it amazing that we have the knowledge that there is a God and He loves us and is always there for us??! So good to see some updated photos of Zoey...she makes me smile in my most darkest moments. We send our love as always! I will finally get a new post in tonight...been too long!
email me your address when you get a chance! :) I have a surpise for Miss Zoey and my sweet friend!

Melissa said...

You keep on fighting sweet Zoey! Dillon & I are praying for you every single day!

Sending you big [[HUGS!]]

Kleidy said...

Zoey Grace, you are absolutely AMAZING ~. I have faith in your brave spirit and I know in my heart that you will overcome this challenge.

Sending prayers of strength, love and healing energy your way, every day ~

Anonymous said...

Master Jake,

You don't know me, but I have known your family for a very long time (since before there was a Taylor). I'm a big fan of all of you and I am very proud of how you all work together for each other. Right now, that's Zoey's strength.

I wanted to tell you that your sisters used to come over to my house for "normal kid" lunches. But I soon learned that they really did like the things your mom fixed better. I even remember when your sister (Caitlin I think) was auditioning for a fast food commercial and kept telling them that she really didn't like their food. It's a memory that sticks with me because it was so funny at the time.

Maybe one day you'll come over with your brother and sister for lunch here :-) I'm sure proud of all the stories your mom tells about you.

Christy Pinuelas

Cheri said...

I LOVE the pictures! I think the top one with the baseball hat is my favorite.

Poor Jake...we have sooo had those meltdowns here over school lunches. On occasion when I don't have avocado for Luke's mandated "turkey and avocado sandwiches...or bust" I've had him buy. Once he came home in tears that the school chicken tenders tasted like fish sticks. I didn't have the heart to tell him that he had indeed eaten fish sticks..which he hates and would not have willingly eaten had he known the truth. It's a wonder he kept eating them...but Luke doesn't miss a meal for anything!!! :)

We are hoping you bust out of there soon! Come on.....numbers! :)

Anonymous said...

Heather - Wonderful words re nurses. They truly are amazing - dealing with the things they see and must do especially on the fourth floor. Kudos to them all and to you for your comments. Well said....

Oh I just felt for Jake - your precious sweet, quiet one.. Jake, everyone is entitled to a meltdown, be it over pizza or whatever! Soon, Zoey, mommy and daddy will be home and your family will be together again (for awhile) hugs to you, little Jake.

And now Miss Zoey - love, love the hat and expression on her face. She radiates her sweet happiness. Whenver I go to your site and see your pictures mommy has taken it makes me smile. I try to do it in the morning here on the East Coast so that I have your sweet smile to send me on my way for the day.

Love and hugs to everyone


Kele said...

Glad you guys are doing well and yes, Zoey does amaze us all!! Please let Jake have the Dodger's goodie bag, it is the least you can do since he will never, his whole life, have a good lunch! LOL! That is hilarious!

Kelly said...

Glad you guys are holding up. Zoey looks her regular amazing self as always...

Tell Joe my kids can feel his pain on his lunch issues. Same stuff going on over here. Sometimes they go to friends houses and come home telling me about all of the "normal" food their friends have. Well, tell Joe there is a light at the end of the tunnel. I think it starts about third grade. It is called trading. My daughter got her first taste of a DING DONG the other day, she traded it for something homemade from her lunch. I can't be there every second..oh well!! I discourage this trading, but inside I have to laugh. Poor Kids, having such mean moms like us!!

rae said...

big hugs to you!!! just wondering if it arrived yet??? does it fit? If you would rather have different one just say the word! Sending lots of positive thoughts your way. hugs

Carey said...

Ok, funny, I always fought for platelets for Chelsea. She's ummm, active ;) Ok, she's a maniac. When you say they're down to 5, that FREAKS me out!!!! That's great she's jumped back up without problems. Whew! I was always so paranoid of her bumping her head and having a brain bleed.

AND 17 days? It seems longer than that, and I know, for you, it must seem like 37 days! Time flies while you're having fun right?! hang in there.

prayers, Carey

Lacey said...

I'm not even going to tell my husband the dodgers were there. He would freak out. Glad she's doing good, and praying for home sometime soon. Hugs from Lacey and Jax

Tammy and Parker said...

Loved your update. We've been keeping you guys in our prayers even though we haven't been commenting much lately.