Sunday, May 31, 2009

Get Me Out Of Here .....



That is the concensus around here.The Needham's are all ready to head home but CHLA's 4th floor authorities have other ideas.Although Zoey's lab's are on a upward trend, we are still a few days from release.She is having a hard time keeping her red cells and her ANC is slow going but luckily her whites and platelets are cooperating.I would much rather hang tight until the doctor's are completely comfortable to release her.I do not want to leave a minute too soon only to find our way back sooner rather than later.Leaving is bittersweet to say the least.We hate this place and love this place at the same time.We walk a fine line between wanting to run away from here at record speed and conversely hanging frantically to the door jams saying "please don't make us go".But it is indeed becoming that time.Today, May the 31st marks exactly 7 months since Zoey started chemotherapy.Halloween 2008 will forever be marked with that black X.7 months of tears and fears and joys and laughter.Many conflicting emotions coexisting in a very surreal place.The world of pediatric cancer.We have met some of our dearest friends here on this journey.We have also said goodbye and still today, face saying goodbye to some of the most spectacular human beings I have ever had the privilege of knowing.So today,on a most unorthodox anniversary we recall a day when our entire world changed.Yes,for the better and yet having lost forever pieces of ourselves that we will never be able to recover.Before us lies a life of uncertainty but before us lies ... a life.Something we continue to not,for one moment,lose sight of.Zoey is a medical anomaly,defying most medical reasoning but there lies the lesson.Zoey's life cannot be measured in numbers or statistics,prognosis and percentages.Her life has truly been measured in moments and miracles.A life covered in grace and in our eyes,endless possibilities.Emotions,for me, are running at an all time high.I spent the entire drive home last night in tears.Fearing living life without chemotherapy but ready to just get to living life.Please pray for the wisdom and peace we so desperately need as we venture once again into a new normal.We will need time to decompress and readjust and for me,be ready to handle what can only be described as a Post Traumatic Stress event.It will come.I need to be armed to withstand it's force and ferocity.I can do it.I have done it.I am not ashamed to admit I am scared.But my God and my faith will rally me and today,onthis day of Pentecost,I will call on the Holy Spirit to guide me.He will.I have no doubt of that.

23 comments:

ABandCsMom said...

I sure can relate with you on living life without chemo. Saddly, chemo becomes a safety net. You will go on living your life. Yes, it will be forever changed. But, your faith will pull you through. It always has me. I do admit. I sometimes lose sight of my faith. However, it isn't lost for long. Once I look into Carly's eyes. It's quickly found again.
Prayers to you all.

sheree said...

as always, many prayers and thoughts for you, sweet zoey, and the rest of your family.

The VW's said...

I can only imagine how difficult the last 7 months have been for your family! From here, you have handled it with such grace and love! I pray that you guys make it home soon...FOR GOOD! I'll be praying for your peace and hope as you begin the steps of your new family journey. HUGS!!!

As always, Zoey...You are ADORABLE!!!

Michelle said...

My sweet and eternal friend...I cannot fully understand what you are going through or know how to make it all 'get better', 'be perfect' or promise you that there will be no more pain, but I can promise you that I WILL be there every step of the way, by your side, giving you whatever you may need whenever you may need it. And who knows, I might just be closer then you think when you need it! :) I love you and hope you have the peace in your heart and strength in your soul to say goodbye to CHLA for how ever long, and start a new adventure, a better one. I wore my bracelet all day today and thinking of you so often. I think I might try to call later and check in!

Hope said...

Bless your hearts, I'm praying...

heidi marie said...

many prayers for God's guidance and support and you take the next steps forward...leaving the chemo days behind. and you are so right, zoey's life can not be summed up by numbers or figures. her journey reaches out to so many.

Edward & Mita Meza said...

Heather, Mark, & Zoey~

We have just met, but it feels like a lifetime of emotion has been spent & spilt talking with you both about our children & families. We plan on staying lifetime friends. Being here at Childrens opens your eyes & your heart. Our family has fallen in love with Zoey & your family. It's been a joy & a pleasure to spend time with you, Mark, & Zoey. We wish the best for Zoey & the family always. God Bless you all. The Meza's (Ed, Mitz, Tisha, Justine, Greg, & Matthew

Lacey said...

She has some more color in her cheeks. I wish I could climb through my computer and give you a big hug. I've actually been longing for California for a couple of days now, it seems like it will be forever that Ray is done with school and we are on our way.
Did you say a couple more DAYS? Wow, I can't believe its almost over. I can see how leaving the hospital is like leaving a safety net behind. I remember the same feeling bring Jax home after 117 days in the hospital. It scared me to death.

Denise said...

You definitely need to look on the positive side....you get to be home with your WHOLE family together and start to live a normal life again. Just like you told me regarding Ella having leukemia.....don't worry about it unless it actually happens. Just keep thinking positive!!! Miss you guys!!

Cheri said...

...those piggy jammies are just too precious! I am ready to scoop her up myself and run the heck out of there with her!!! The pink in her cheeks is so good to see!

I am so looking forward to the announcement that you are indeed getting the heck out of there...and Heather I can only imagine the degree of conflicting feeling you must have at this moment. I think Post Traumatic Stress is surely something you will feel as you begin to let down and decompress, but I know you will look it in the face and conquer it as well, because the worst will be over for Zoey. In a way you have been on the battle field just as a soldier has with his unit...and you Heather, are not one to hang out behind the others, you have been fully engaged, fully armed as only a mother can be, and have been ready to fight for Zoey and her friends on the 4th floor with all you have within you. You will look back at this time knowing you did everything you could...for Zoey and for her friends.

Continued prayers for you and Miss Zoey! :)
Cheri

Kele said...

Here's to hoping you 'release' is sooner, rather than later. Zoey in the first pic says it all... "LET ME OUTTA HERE!"

stephanie said...

,As always Heather and Mark, you have our constant prayers and support, from afar, but, none the less you always have it.I can't share in the feelings you and your family have been going through for the last two plus years, but I can share in the feelings a mother has for her child, the longing to keep them safe, and to protect them at all cost.You and Mark have done that so beautifully for Zoey.You always say that you do it because you must...but not everyone would be able to do what you and Mark have done and with the grace you have done it with. Heather you are so much stronger than you think, you will rally, things will somehow fall into place.Maybe not with the greatest of ease, but they will.Anyway as I have learned "with ease" is not the Needham way.Sure isn't the Zoey way. I am so proud to call you my friend.

Peter Olson said...

You are in my prayers.
I can relate to that going home feeling (happy & nervous at the same time). It will be good to be home. May God bless Zoey, your family and friends.

Anonymous said...

Many, many prayers are coming your way Heather, for you,for Zoey and all the Needhams for the next "event" about to unfold. (home and no more chemo) Some parts of it (no chemo) must almost seem surreal as it has been so much of all your lives these past 7 months. It will be awesome to have everyone under one roof and Zoey can be with her brothers & sisters 24/7.

On to the beach to soak up some California sunshine!

Love that first photo. Yes I agree with so many others, good to see the "pink in Zoey's cheeks" is back. Beautiful!!

Love and hugs to everyone

Bluebelle

Anonymous said...

Beautifully and fully expressed emotions Heather. Sounds like a good time for the Serenity Prayer too. Love you, and our lives are richer for learning about your bitter sweet journey. Zillions of kisses for Zoey, constant prayer and love, Christi Harman

Monica said...

Zoey is looking so much better. Her color is looking good and her eyes are bright. I am praying for Zoey to be healed and that you can soon take her home. I love her piggy jammies. Too Cute!

http://www.pennyparker2.com/ValleyGrow.html

Jeanette said...

I can only imagine how ready she is to get out of there. God is amazing and has shown himself in your story. You and Zoey have touched so many!! We will continue to pray!

Anna said...

God is your strength and your shield. Psalm 18:2
You can do this Heather.....

Lacey said...

Hi friend, first I have to tell you, my Carter came to me the other day and said "can I play with Jake?" And I was like Jake who? He said, you know, Zoey's brother. This kid is 6, but he loves to play with older kids. He usually plays with Mondo and his friends. I thought that was so cute, he wanted to go to Jakes house. Hopefully soon.
Anyway, I looked up the CT surgery team in LA. I am going to call as soon as they open, we are a little ahead of you. I will let you know what they say. LA would be great, so much closer to home. Family and friends would be close. Plus I'm missing So Cal already, maybe because Ray is in school right now so I am like, hurry, hurry, be done so we can get outa here.

ANewKindOfPerfect said...

You have done amazing for 7 months. I hope that in a few more days you are home for a LONG TIME!!

scrappy quilter said...

Awe dear one, I will continue to pray for you and your sweet precious Zoey. God has you both in the palm of his hand. Your faith will pull you through.

Mama Mason-Mann said...

Sending you the greatest strength. I have always found the time after the crisis to be difficult. The "post traumatic" as you put it. There are people far and wide here to support you in whatever way we can.

ntmjbmom said...

I felt like I went through a horrible funk when Ben's stem cell transplant was over..and we were finally home after about 8 months inpatient..everyone was like, "wow..now it's OVER..and WOOHOO".

And I felt a mind-numbing depression come over me..a gray fog of emotions that I had supressed to get through it all..and realized it was not really "over" for me..but after all the feelings finally caught up with me..and I gave myself permission to feel exactly whatever I felt..
it started to lift.

I'm right up the street if ever you want to connect.

Hugs,
Amy
Benthebrave's mommy