Friday, January 23, 2009

The Little Warrior ....






In 17 hours and 43 minutes, but who's counting, Zoey will be disconnected from her 3rd round of chemotherapy. Although the days have had their ups and downs, for the most part Zoey has weathered the storm triumphantly. I don't think I have ever taken the time to explain Zoey's protocol since we began this journey, so now might be a good time. First of all, Zoey is on a treatment plan that is very specific to children with Down syndrome. And very specific to children with Down syndrome who have AML M7. It has been through trial and error and tragically, through the loss of others before her, that medical advancements have come up with a course of treatment to give these children the best chance at survival. Sadly, 20 to 25 years ago, the medical field did not even attempt to treat children with Down syndrome who were diagnosed with leukemia. What they were finding at the time, was that the treatment alone was killing these children, not the leukemia. Somewhere along the way someone decided to try treating these children with less toxic amounts and what was soon found, was that not only was it working, it was working better than when typical children were being treated who had a similar diagnosis of leukemia. Zoey's chemo is still very, very intense. AML is nasty and requires it to be hit extremely hard over and over and over again. 6 times. Each time she is hooked up for 96 hours. During which she has two drugs, ARA-C and Daunomycin, given intravenously over that time period and another, 6-TG, given through her g-tube once a day. Now, the 5th and 6th time is a bit different. It involves ARA-C and an injected chemo drug and that combined round is going to be the hardest of all on her little body.Each time we are admitted we will be in approximately 3-6 weeks all dependent on side effects and more importantly,the presence or hopefully the lack of presence,of infections.So,for people wondering and asking,we have 2 hospitals stays remaining after we arrive home from this one.A long,hard road still ahead and hardest,most of all, on Zoey. So, when Miss Zoey is cranky and irritable and has no smiles to give freely, you know why. With that said, she was full of smiles today. For everyone .... except me. She was just down right mad at me and .... her doll. As seen in one of the pictures as she is literally kicking it away. When Mark bought this doll for her we thought she would love it. Not so much. Zoey loves real little people but not this doll. I keep pushing the issue but the more I give her the doll or place it near her, well, the result is the picture. And today,totally magnified,as noted by the angry cross eyes. Zoey definitely has acquired some spunk over the last two months. Courtesy I believe of chemo. Zoey was so excited every time our door opened and a new face appeared. In fact most of those faces were pretty much medical personnel but she didn't care who it was as long as it wasn't me. She had smiles aplenty and wanted to be held by every single person. Again ... everyone but me. I think today she had grown tired of seeing my face and by evening, when her daddy walked in, she was about to leap out of my arms. Tomorrow at 3:00, the bottle containing her orangey/pinky miracle, will come down and the wait begins. Numbers will need to bottom out once again and numbers will need to rise once again. During that time we pray that her little body will fend off fevers and infections and if she is blessed and lucky enough, we might find our way home within the next three weeks. Her strength and resiliency astounds me. Seriously astounds me. All the kids up there do. There are so many children that I see daily, that allow me to see the beauty even while walking this uncertain path. Everyday I over hear some amazing, funny, insightful and sometimes, heartbreaking words, come from the mouths of someone far too young, enduring something far too unfair but somehow I stop in my tracks, stand in awe and am still somehow grateful to God for placing us on this journey. Little love is finding her way once again. Enjoy the pictures. Some are self explanatory while others,like the one with her BIGmack recorder, need some background. She loves that button. We usually record little songs for her and it is about the only "toy" type thing she really likes. Well, Zoey will not, not ever,use her hand to activate it. Only her face and as of late ... her foot. Her sleeping picture,I loved it because she only recently started sleeping on her tummy like a big girl and I really thought she looked HUGE in this shot. Not at all deceiving because she has grown so much since chemotherapy began. That is all I suppose. We were humbled once again by all the comments and emails. Please keep your faithful prayers coming. They lift us and carry us ... as always.

18 comments:

Mia hat eins mehr said...

Hey little Miss Z, keep it up like this. You are a strong little lady, and one day I would really like to meet you. So, my prayers are coming, and also some prayers for your tough family you have well chosen!

Reagan Leigh said...

Adorable!!! The facial expressions are just too much! Love the Cindy Lou Who onesie (Reagan had the exact same one but has long since outgrown it). Don't worry about Zoey not perking up for you...it's totally normal. Reagan's OT was reassuring me of this yesterday...it's the novelty of the new people that she likes. Of course she loves you the most!!! Take care, still sending lots of prayers your way!
Tera

Lacey said...

I love to see her smile. Thanks for telling us how her treatment works. We are cheering Zoey on. Hugs from Lacey and Jax

The VW's said...

What an adorable, inspirational, smart, spunky and brave little girl your Zoey is!!! She brings such a smile to my face, yet such a saddness to my heart! I'm so sorry that she and you have to go through this tough time! I've been praying and will continue to think of you guys often! Hang in there!

Carey said...

She looks as beautiful as ever! I'm confused now though. You said six times, meaning six rounds? B/c then you said after this one (round three) you only have two left, but that would be five. Maybe I've confused myself, which happens quite often!

Anyways, give that girl some loving from Chelsea and me!!!

Heather said...

Five is a two parter so it is confusing.Technically two more inpatient stays but protocol states a second phase within that part five numbered as "six".So yes ..confusing ...even to me!Make sense?

Cammie Heflin said...

Bless little Miss Zoey's heart, and mama's too!

Cheri said...

Ohh poor dolly, and poor mommy getting the cold shoulder. But, that face is just too much whether ferocious looking or angelic... I could eat her up! Thanks for the education...I was wondering about the duration myself. Thinking of you!
Cheri

Anonymous said...

Zoey loves, loves you mommy. Just not at the moment - talk about body language and "get-away from me" looks! AWESOME! Miss Independence...Love it!!

Soon she(with mommy & daddy) will be heading home - bet the boys are looking forward to that And you too Taylor

Hugs to everyone


Bluebelle

Jeanette said...

Hang in there mom! The hugs and cuddles are coming. I love the pictures, especially the frowny face. Hugs and prayers from Texas.

Victoria Strong said...

Little Zoey amazes me. You amaze me. Your entire family is an inspiration. Thinking of you all and praying sweet Zoey keeps fighting so strongly...and with her new spunk!

Michelle said...

I do love the spunk...the spunk is there so this 'stuff' doesn't get the best of Miss Zoey! Thank YOU for your kind, loving words and your friendship! And yes, I listen to your music quite often...I actually made a CD with some of it on there, to keep me facing forward, looking up and smiling! Glad you are on the 'down-hill' slide of this round...our prayers continue as always as does our love for all of you!

Lacey said...

Do you think she will be there for this admission or going back for her 4th round? I planned on going to the hospital anyway to check it out. We need to talk, I want to know what you think of the hospital because we are afraid of moving away from our comfort zone, even though i hate our hospital, its what we've had for the last 3 years, and I just read an article from the LA times that said pediatric care in Cali is being cut like crazy and hospitals are losing pediatric beds. Thats scary.

Christina said...

Oh Heather it feels like we are both in the midst of a very long journey that should have been over by now. :)

Your little Zoey is such a warrior indeed and I know you will get through the rest successfully.

I'm sorry I don't say much these days, I am wrapped up in our own adventure, but I think of and pray for you and Zoey everyday!

JUST A MOM said...

Loved the first picture- so NOT Zoey!

Tate uses his face/mouth to turn things on too, why?


Alison
(Tate's mommy)

Kele said...

Just checking in again, anxious to hear how it is going since this post and now that this round is done!
BTW, love all 'The Little Warrior's' expressions in the pics, too cute!!

Melissa said...

WOW, I stand so unbelievable amazed with precious Zoey's strength & courage!!! What a warrior!
Keeping this little girl in my prayers!

Cjengo said...

Awwww her smiles are so sweet