Friday, February 27, 2009

Heading into the weekend ....

This weekend should hold pretty much the same as last.Primarily, preparation for Zoey's admission on Monday.Preparation that entails a physical as well as an emotional component.This extra week home has been amazing and makes me all the more ready to go but at the same time,dreading it.Double edge sword.We spoke to her oncologist yesterday and his feeling was to wait until Monday for a lab draw.We had vacillated between today and Monday for two reasons.One,because of all the junk floating around the house and the chance of her coming down with something,coupled by the fact that she takes Bactrim on the weekends.Why the Bactrim comes into play is because it came to our attention that it can sometimes lower the ANC a few days after taking it.Zoey only takes Bactrim on the weekends as a prophylactic for a certain strain of pneumonia.She will continue to take it for her entire chemo course as well as for a short time after.The draw on Monday could potentially be effected by her taking it,so her oncologist said to forgo the Bactrim for this weekend to alleviate a possible discrepancy in numbers.So unless she spikes a fever .... did a just say the "f" word?,we should be a go for round 4 on Monday.News came a little bit ago and we have to arrive at 5:30 am.Seriously.If they think I am going to get there on the dot, only to wait for AT LEAST 3 hours before her procedure,not going to happen.I am going to push that until at least 6am.I know,oh so much better but at least to me, it sounds better without a 5 at the beginning!I think I will pack for the month stay this time.Might as well get it out of the way.As for the boys,their schedule is pretty much set.I have run into a problem with Joe's care on Tuesday mornings but hopefully I can get that in place within the next couple of days.Other than that I think we are set.Zoey's birthday is Monday and seeing CHLA is not the best party venue,we are going to have a little gathering here on Sunday.Nothing big.Certainly not anything like the big shin dig we had last year.Last year we had her Baptized on her birthday and had a party that day as well.That day was so bitter sweet for me.It was the culmination of a very difficult year,with many medical issues resolved and won but somehow, to our great dismay we found her immersed in the unimaginable early stage and battle of Infantile Spasms.Her birthday celebration that day found not only Zoey in a seizure fog and medication haze but me in a fog of my very own.If you look back to pictures of that day you could see it,in both of our eyes.I went through the motions of that day.Not mentally present at all.Caught up in the could have beens and the what if's.I did not heed the advice of my friend who said:Embrace the day.It won't come again.Nor did I listen to her lesson learned in her own journey with her magical son,her words:"If I knew then what I knew now,I wouldn't have shed a tear."I didn't listen.That day I cannot get back.I do not intend to make the same mistake twice.I will embrace this day.I will rejoice in the moment.I will not look at the day from the perspective of how could we be battling yet another seemingly insurmountable diagnosis,I will instead say,look how far she has come.Look how much we have all grown in our faith and strength as a family.If you were to look back into the archives of our Infantile Spasms days you will see the fear and the bitterness.You will see a mother angry for her child and angry for her family.I am not that same person.And although I may, to some, be living their worst nightmare,a child with cancer,I will not let that define her or our lives.We are so much more than cancer and diagnosis.Zoey is so much more than Down syndrome,stroke,seizures and leukemia.She is a wonder.She is a miracle.She is our two year old hero.Come Sunday, with true peace in our hearts, we will thank God for leading us to these moments.And when Monday arrives,at 11:11,I will again thank God for the gift of Zoey.Even though our day will be spent in the hospital,I will be filled with gratitude of the gift of another year with my daughter.I have no idea what the future holds for Zoey or any other of my children.Or Mark and I for that matter.What I do know is that we will face what ever comes our way together.Armed with our faith in God and in each other and most especially our faith in one small child that has taught us more in the first two years of her life then we could have ever,ever imagined.The next month is packed full of birthday celebrations.Zoey's Monday,Caitlin will be 20 on the 7th,Jake will be 8 on the 14th and Jess will turn 22 on April the 4th.Busy,busy, busy.Throw in a round of chemo and life will certainly be busy.Fun,well,minus the chemo,but busy.Keep those prayers and good vibes coming,we are in the home stretch,I can feel it.The video: When most are feeling the pangs of a child in the midst of their terrible two's,you know,the constant chasing after because they are into everything,we are THRILLED that Zoey has found something,anything to get into!Courtesy of Joe,a broken pane on our entertainment center has lent itself to Zoey doing a little container play.Although she doesn't head to the basket with the definitive knowledge that things or objects are in there,once she finds it,she hauls things out.Nothing like a few Wii remotes to keep a girl happy.We happen to think it's pretty cute.*Pause the blog music at the bottom if you want to hear the video. video

17 comments:

Monica said...

Oh yes the terrible twos...I remember those days very well! The most exhausting, happiest time of our lives.
Happy Birthday Zoey!

Caitlin said...

Yay Zoey Girl!
I love you!
Caitlin

Kelly said...

Heather, I have Tuesday mornings open. Nick and I usually just hang out. My girls come to clean that day so we usually are looking for something to do. Call me if I could help you. Geralyn has my #. It could help both of us. Nick is bored and could use a friend to play with.

Anonymous said...

I'm a BIG fan of container play. Three cheers and more for Zoey who never ceases to amaze. Take a basket Monday along with everything else. Ha! Love you all and best, best wishes, Christi Harman

Cammie Heflin said...

She is adorable! I pray things go well for her!

Mrs. Hefelfinger said...

She is the picture of joy. I love that.

Happy birthday, Zoey!

Mo

Reagan Leigh said...

That's so wonderful! I don't think you truly appreciate how far she's come because you see it every day...but Heather she's doing some awesome things now!! So exciting! And all in the face of Chemo! This girl is seriously tough! Have a great weekend and I can't wait to see some birthday party pics!!

The VW's said...

Zoey, You are precious!!!

Praying that your family has a wonderful weekend celebrating Miss Zoey! Praying that she stays healthy! Praying that the next round goes well and quickly!

Hugs!!!

Anonymous said...

love, love the video little Zoey!

Have an "over the moon" day tomorrow at your party! Bet your mom (and dad) will have some awesome pictures of that! Can't wait to see them.

Prayers are coming your way for Monday's trip back. but....you'll do great Zoey, just as you always do. A true fighter/princess!

Love and hugs to everyone

Bluebelle

Tberri said...

Hi, I enjoy reading your blog and keeping up with Zoey. go to my blog and pick up your kreative blogger award!!! I love how you document Zoey's sweet little life! She is precious!

DirtyThirty said...

How funny. Did you ever think you'd be coaching your child to get into things? It's so funny how we celebrate things like that with the girls, but with my son I was pulling my hair out and going crazy. He needed no assistance!

Anonymous said...

PLEASE PLEASE get rid of the music.

grammygwen said...

Keep the music, it is your blog. Obviously the music speaks to your heart and what you feel. Thanks for sharing. I hope that Zoey has a great party today.
God Bless,
Gwen

Sweet Angel said...

You are starting round 4 Monday and we are starting round 5 Tuesday. We have also been postponed a week or two. First week the hospital was full of RSV kids and second week...The pharmacy won't have Kristen's chemo until Tuesday. So my question is what are they giving her? Because this is Kristen's 3rd time with leukemia, she has had her lifetime limit of the blue and red drugs also known as daunarubicin, you know the ones that cause permanant heart damage. So they are bringing in a drug called clofarabine. The side effects to that drug are enough to make me hurl just thinking about it. We were told to count on 4-6 weeks in the hospital as the bone marrow will be supressed for longer. So while we are there in the great PCMC, we will be thinking about you and Zoey going through about the same thing we are. Happy Birthday Zoey!

Lacey said...

I can't wait to meet that sweet little girl. I am so ready for vacation. 5:30 in the morning? Man these people are crazy.

Michelle said...

My sweet, courageous, strong, amazing friend...my thoughts have been with you ALL day...waiting, wondering, praying and hopeing...Happy Birthday sweet Zoey Grace! Love you guys so very much and pray it's a fast, successful round...get you guys back home, bring on spring, bring on our vacation...finally meet you guys! Call if you shall need anything...I mean, anything!!! hugs, hugs and more hugs!

Max R said...

I aunt heather, this is Max. Zoey is soooooo cute! My mom told me what that person said about getting rid of the music and I think that is crazy! I just wanted to let you know I listen to your music every day while I am doing homework. HAPPY B-DAY ZOEY!!!!!!!
LOVE YOU GUYS:)