Monday, September 21, 2009

Adventures At CHLA .....

Today was clinic day for Zoey.For some reason I wasn't as nervous as I usually am.Not sure why but it was a welcome change.Poor girl was beside herself once we hit the doorway of the procedure room where her port was to be accessed.I haven't EVER seen her react so intensely before she hit the threshold of the room.Whatever the reason for that,she was hysterical throughout.Felt so badly and as she cried and screamed and looked me straight in the eyes,I was instantly reminded of all the times over the last year when I could not help her and could not take away her pain.Hated that reminder.She recovered quickly and we headed over to the 4th floor to say hi to our favorite nurse,Laura,while we waited on labs.A few of the other incredible nurses that cared for her were there as well.Zoey was shy at first,I know she recognized where she was and she was a bit apprehensive but warmed up and blew kisses and waved at everyone eventually.I just cannot believe sometimes that we were actually there,on that floor.The oncology floor.I cannot believe,that in one short month ,we will hit one year since diagnosis.One year.A lifetime in many ways and in others,like yesterday.In fact,all the nurses were commenting on how big she has gotten and I was having a hard time recalling how big she was,this time last year.I think she was barely 17 pounds.Today she was 24.Earlier this evening,I went back and started looking back trying to find her exact weight the month before leukemia came knocking and as I looked back I was struck by some of things I wrote.Like the nagging feeling at the beginning of October that something was wrong.I thought she was fending something off.Her naps were longer.Her smiles didn't come as freely.She had a strange rash.Fevers here and there.Her coloring.All these things and I kept coming back to my mother's instinct that said,something was wrong.Well,something was wrong,wasn't it?Really wrong.And my heart of heart knew it.But still,as I glanced at her pictures during the better part of October,she looked pretty good.Hard to believe that leukemia was taking over her tiny body.As of today,nearly one year later,she is clear and healing and still in remission.Her numbers are up from last month.White is 3.94,hemoglobin 15.5,platelets 167,00 and ANC 1500.Much better.Now lets hope they stay that way.Her doctor was pleased and we will go back next month and draw again and then yank her lineWhat a difference a year makes and how incredibly,incredibly blessed we are to be at this day.The first year,as I was reminded by her oncologist today,is the most difficult and she made it,through that first, most difficult year.What a girl my little Zoey is.What an amazing girl.

We saw a few of our friends today at clinic.Other little fighters.First we ran into Kai.He has been out of the Bone Marrow Transplant Unit for just a bit.He looked SO good.So handsome.I wasn't able to see his cute little smile under his mask but his eyes told me he was smiling from ear to ear.He is happy to be home and his family is beyond happy.Next we saw Klein.I was definitely beyond happy to see him.Klein will always hold such a special place in my heart.He is an amazing 10 year old.An old soul with a gentle spirit.He was just released from the BMT Unit as well,about 10 days ago and he too looked fantastic.These kids bodies are put through the paces and to see them emerge with strength and that spirit intact,is incredible.Klein is a miracle.He had all the numbers and statistics stacked against him and he defied each and every one of them.Not without some scary,scary hurdles but even those seemingly insurmountable hurdles,he cleared.The beautiful thing about Klein,is that he never,ever doubted that he would get to this point.These children teach us about hope and faith,with such grace and wisdom beyond their years.They inspire me each and everyday.

We are nearing our delivery for the blankets.Hopefully next week.We have had the most amazing contributions in funds and manpower.I have no idea how I am possibly going to thank all of the people who have given so selflessly.I hope each and everyone of you know how much we appreciate your continued love and support.The following is what will be given along with the blankets.Caitlin wrote it and I think it's perfect.That is all for tonight.Continued prayers for sweet Ella as they are still waiting on results.




The Heart Blanket Project

Each year, over ten thousand new cases of pediatric cancer are diagnosed. This means that every year, thousands of children battling cancer must spend time away from their homes, away from all of the comforts and familiarities that come with one’s own space. Some hospital stays are short, others long, but all hospital stays are difficult, especially when facing such an overwhelming disease like cancer.

Zoey Needham has spent a great deal of time in and out of the hospital for a multitude of medical reasons. In October of 2008, Zoey was diagnosed with Acute Myelogenous Leukemia, also known as AML. While at Children’s Hospital Los Angeles for chemotherapy treatment, she received a special blanket. It was a warm and cozy blanket covered with a pattern of hearts. She used this blanket throughout her stay at the hospital, and after her release from CHLA in June 2009, she brought it home with her. Zoey loved her heart blanket during her stay in the hospital and continues to love it just as much at home. Her family thought that other cancer warriors might love to have their very own blankets, and so the Heart Blanket Project began.

Each blanket is handmade for a child who is facing and fighting cancer. These blankets are made with love and compassion. With each knot of the uniquely tied border, strength and hope are woven into its fleece. The ultimate wish for these blankets is that they will bring warmth and encouragement to all of the children and families who receive them.

May this blanket wrap you in comfort, envelop you in love, and warm your soul so that you may endure your own journey with perseverance and courage, knowing that you are in the hearts of those who love you and those who made this blanket especially for you!

13 comments:

Anonymous said...

Just beautiful :)

stephanie said...

What Caitlin wrote is perfect. Wish I could see the happy faces when you make your delivery.

Lacey said...

Yeah for much better numbers. You probably saw that I got bombarded with blankie requests over the weekend, but I'm not even worried because so many people have given material, or just made donations. So now I can make sure these blankies get were they need to go. That is my new favorite pic of Zoey. Love it.

Tina said...

How beautifully written...I think its so wonderful what you are doing, to bring smiles to these little faces at a time when they and their families are probably feeling their lowest.
So happy to hear Zoey's counts are doing so much better.

Junior said...

Beautiful, such a wonderful outreach to all the brave warriors out there.

Tish said...

Hooray for Zoey's counts!

I'm thrilled that The Heart Blanket Project is a success!! Your labor of love is seemingly contagious - a good type of contagious, that is - as many are joining your family's beautiful act of giving!!

scrappy quilter said...

Caitlin's words are perfect as is your sweet little Zoey. She continues to amaze us doesn't she. Continued prayers.

Kristen's mom said...

Yeah for Zoey! Her counts are looking great. I know what you mean about the last year. What a year we have had!

Googsmom said...

{{{{HUGS}}}}}

How can one go about obtaining a blankie from you? I have a little fella who is battling his second battle and he's not even two yrs old yet. His Mommy would love a blankie from you. I'd like to suprise her. Could you let me know please Heather, Thx bunches.
Jenn

Kele said...

I know your doing this for your friends and warriors is giving you great comfort. It is a beautiful thing H.

Anonymous said...

Caitlin - you are indeed blessed with words, as is your mother. And little Miss
Z - love those numbers. Fight on little warrior....


Love & hugs to everyone

Bluebelle

Michelle said...

So glad she had good numbers! What a great picture of that beautiful angel at the top of the blog...I love it! Was so good to talk to you as always. Blankets should be on their way today or tomorrow...we finished them last night - they look great! Love you!!!

Anonymous said...

We love Laura too. Faith is finally in maintenance so we are now down to once a month.
She is finally getting back to her normal self which is so fun to see and such a relief.
We are also getting our hair back (we are calling her peach fuzz cause that is what it feels like).
Well I love catching up on Zoey I am glad her number are getting better. Prayers are continued your way.
Katie