Monday, November 3, 2008

Trying to get into a new groove .....



Has it only been a week? It feels like a lifetime. Time has taken on a whole new meaning for me. Time now has become a waiting game. Specifically, waiting on Zoey's blood counts. They continue on a downward spiral. Downward spiral in this case, not being a bad thing. Chemo kills the good as well as the bad. Today Zoey's white count was 1.2. Yes folks, by tomorrow Zoey will have just about nothing in her tiny body to help fight infection. Lovely. I have now become more of a germaphobic than before. Is that even possible? I have to say that my biggest fear right now is that Zoey will not be able to fend off yucky stuff before her counts climb back up. Last night I noticed she has a weird cough when she first falls asleep. Only then. Seems like a post nasal drip type thing. Like maybe a cold already. Let us pray that this not the case. Less then 24 hours and her first chemo treatment will be complete. I still have a difficult time writing that. Chemo. The word itself is ugly. The diseases it treats far worse. The 4th floor is a sad place. Doors closed. Protecting fragile bodies from what lies beyond them. Families sitting in a room. Left with their thoughts and feelings. All of us trying, in our own way to figure out how in the world we got there. Focusing on our children. Praying for miracles. Not only for our own but for all these innocent children suffering in ways no one should. Zoey's roommate is a tiny, frail girl named Frieda. She is five and she is terrified each and every time someone enters the room. She screams out, "No Momma, No momma" ...... every time. She absolutely breaks our hearts. Today, when the doctors were in, they had an interpreter and basically, this five year old asked the doctors, herself, what was going to become of her life. Was she going to get better. She had a wisdom about her that NO child should have. She instead should be home playing with dolls, not pondering her life expectancy. Speaking of home, I am home. Mark and I have decided, for now, to do an every other night shift. We will have to see how it works as time goes by. Being home without Zoey continues to be the hardest part. As much as I need to pop home and take care of things here, it is, in many ways easier to just shut out the world when I am down at the hospital. I only wander from the room to use the bathroom and stretch my legs. I always wait until she has fallen asleep. I can't bring myself to leave her when she is awake. It was the same when she was in the NICU. Right before Mark got to the hospital today, she dozed off and I snuck out for a moment. I wandered down the hallway and ran into two moms. We began talking and I seriously fought off the urge to just run away. I stood between the two, one holding a darling one year old little guy. He has neuroblastoma that has spread to his bone marrow. I listened and and glanced back and forth as they spoke and tried once again to try and figure out how it is that I now have become part of a new mom's group, one that finds having a child with cancer, as the common bond. This is our new reality. We will do this, just as we have tackled every other seemingly insurmountable obstacle. I won't like it .... but I'll do it. Because I have to. Because Zoey needs me. I will not let her down, which may require me eating. But you know, food and me are not friends lately. I did manage to get down half a sandwich. I felt horrible afterwards. A week's worth of not eating, will do that to you. Shocks the system I suppose. I once again should try and get to bed early. Or rather earlier, as it is already after 10:30. I still have laundry and a few things to get done before I turn in and quite frankly I dread going up to my room. I miss my husband. I miss my baby. I slept with one of her stuffed animals the other night. It reminded me of her NICU days when I would bring home her tiny baby clothes to wash and I would take a onsie t- shirt to bed with me, just so I could smell her. Zoey had another great day. These pictures show you how absolutely amazing she is. It is as if she says, bring it on, I can take it, watch me. Dig deep princess, rough waters lie ahead but we all have faith in you. We have seen first hand what this child is capable of. Her strength and resiliency are unparalleled. She lights our way through the darkness. Shine bright sweet girl, I feel a bit lost. You lead, I'll follow and God just might have to carry us both.

21 comments:

Victoria Strong said...

What an amazing little girl. Her smile lights up my heart. And to see her so playful after all that she has already been through. I pray for her smiles to continue. I pray for you to get to see them for a long, long time.

Evalena's Mom said...

That's the BEST hospital attire I've ever seen! Every little one should have something other than hospital PJs. Stay strong, Heather - you're an amazing woman - don't be afraid to ask for help. There's lots of us out here who are praying for Zoey and who'd love to help...in any way!! Love to little Frieda as well.. :)

second born said...

That's my girl.
Please give her about a hundred kisses from me.
Caitlin Sarah

Cammie Heflin said...

Beautiful post, I am praying for your beautiful Zoey.

KristyC said...

Oh my! She is quite the fashionista!! LOVE the babylegs!! Her smile fills me with happiness, she is so strong and mighty!! I hope and pray that the days continue this way! Heather-keep eating those sandwiches or anything for that matter to stay healthy too!! Always thinking of and praying for the Sweet Princess and your family!!!

Anonymous said...

What a smile - love the outfit!

Your new schedule for you and Mark sounds good.



Take Care

Bluebelle

Cheri said...

I can just picture you standing between those 2 moms...perplexed as to how you got here. I used to say parenting is such a "humbling" job because my oldest was a challenge at times...
But, after reading today's post the words that came to mind are... parenting is really "sobering", we just never know what roads we will travel with our children and just how much we as parents need to dig in and draw all the strength we have to handle each challenge with all we have and as gracefully as we can. Heather...your strength and gracefulness are really beautiful. Zoey is so lucky to have you as her mommy...as are the other 5!

I am going to have to buy some of those babylegs for Reid's heart surgery at the end of the month...too cute!

kristynewb said...

She's so cute!
What a sweet smile! :)
Try not to worry too much about infection while her counts are low. I know it is very hard, I remember! But they have some SUPER strong antibiotics out there that are amazing, if it does happen! Our daughter's oncologist called them the "big guns" and they always worked for her, even with a staph infection.

We're still here praying for Miss Zoey, her counts to come up quickly, NO infections, and a trip home before the next round. Also, praying for both of you to be able to eat and get good rest.

Kristy

Cleo said...

Heather,

Zoey Grace is bigger and more powerful that any challenge.
Zoey has an infinite life force within her and she is fighting with all her divine grace, conquering this battle one day at a time.
God Bless you Zoey Grace ~

Be present and stay strong and positive. Focus in healing, give all your power to your loving and healing energies, send them to Zoey every waking moment, before going to sleep, when dreaming. Continue to give all your love and healing energies to Zoey 24/7.

Trust in God with all your heart, lean on him, in all your ways acknowledge him, he will direct your paths. Let nothing disturb you, Let nothing frighten you.
God alone suffices.

May Zoey Grace continue to be healthier and stronger day after day ~

Keeping Zoey, you and your family in my positive thoughts and prayers. Sending loving and healing energies your way.

(((HUGS)))

Jodi C said...

Heather~ I come to you from yet another cancer family's site. I am so sorry you have to travel this road, it is horrific. We too stood helpless as our three year old started war with leukemia. While I can not tell you it ever gets easy, it does become your new normal and therefore tolerable. Please know that you are in our prayers and that we are sending love your way. Please give Zoey a hug from us, she is amazing.

Reagan Leigh said...

So great to see that smile! I like the idea of trading off nights at the hospital. I know it's hard (on both of you) but I think it will be better for the boys and it will give you a small dose of normalcy in your crazy new world. I know you're making an effort...but a half of a sandwich is not eating! You have to get more in that body or you are just not going to be able to function. I'm praying for Zoey but also for you because you HAVE to take care of yourself. We're not talking spa treatment here...just some food, a shower, and some sleep...it's not too much to ask. Just do it!! And give that baby a kiss from Reagan and me!!

My name is Sarah said...

Hi Zoey, I love your leggings little girlfriend. Your smile lights up my face. Hang in there. We are praying for you.

Shari said...

Zoey is amazing! What a precious babe! I continue to pray for her and your family during this time. Thank you for taking the time to update! God bless you during your time of trial.

Karen Owens said...

Baby Legs!!!!! Love them. We are praying hard!

Kelly said...

As always, Zoey Girl looks happy and fashionable. Heather...you probably do not know this, but I can cook. I love it. I swear if there is anything that sounds good to you I will be happy to whip up a giant batch of it and bring it over to you and your crew. I am not kidding!!!! I dare you!

heidi marie said...

what a beautiful little smile! just warms my heart to see someone so little fighting so much...with a smile :) heather...you are so strong and i don't even know you, but yet i am so proud of and touched by you and your family. continued prayers for all...

Carey said...

are you making it up? she looks way too good to be on chemo! what a smile. i bet she's got those nurses just in love with her.

and ... our favorite outfit in the hospital, babylegs and onesies! (well not me, ... chelsea. i didn't wear babylegs or onsies ... )

just jean said...

All we can do, whatever our trials, is to take one day at a time. It looks like Muffin Zoey is an expert at that. We can all learn from her and the courage that she exudes! Thanks, too, for updating her progress so often! I am drawn to your blog everyday to see how things are going.
Prayers still flying your way!!

Tommy's mommy said...

Stay strong, we are praying for Zoey and your family.

Jeanette said...

What a precious angel. BTW, LOVE the legwarmers. We are praying with passion for sweet Zoey.

Michelle said...

Heather - thank you for allowing us to share in this journey. We continue to pray for her, you and the family. She's adorable in the photos you posted. Baby legs are too cute.