Sunday, December 14, 2008

The Waiting Game Begins Again ....

Way too late for me to be posting.However,I am on this weird adrenaline rush and have decided to organize cupboards and do laundry, at a time when I should be taking full advantage of being home and being able to sleep in my own bed,uninterrupted by roommates,nurses,beeping machines and very loud hepa-filters.Instead, a post to end the day.Today went way too fast but I so enjoyed the time spent with the kids and the luxury of soaking in the comforts of home.I have missed the ability to just walk outside whenever I wish to take in the cool,brisk winter air or just feel the warmth of the sun upon my face.I managed to get a few Christmas errands done but mostly I just hung out with the kids.Taylor did work most of the day and Jess was up very early to run 10 miles with her Team in Training group.The boys and I leisurely got going and the morning evaporated before I knew it.We headed to Venture to meet Tate in the late afternoon and can I just tell you, what a doll he is?So cute and so much a McKay.Thank you to the McKay family for the gift of your friendship and the honor of being part of your amazing journey.After leaving the McKay's, we began our trek to LA to see Zoey.And what a trek it was!2hours to get there.2 hours!!! We put Christmas music on and tried to make the most of it but for a drive that should take maybe an hour,I was pushing my luck with the boys.Mostly Joe.Jake never really complained but Joe ..... If he said "OH MY GOSH" once, he said it 20 times but the line that cracked Jess and I up was "OH MERCY".We were dying laughing.Finally .... Children's Hospital and we were soon to find out that the drive was more than worth it for the boys.First,Zoey was so excited to see us.She was sitting up playing and smiling and reaching for us.So darling.We visited for a bit and we soon found out that it was Disney night there.When I say Disney night I am not talking characters I am talking actors and actresses.All young kids and young adults from all the popular Disney Channel shows."Suite Life","Cory in the House","High School Musical","Wizards of Waverly Place" ... on and on.Joe and Jake loved it and the evening was soon dubbed," pretty cool".Well worth the drive in the end wouldn't you say?.We stayed for awhile and headed out and much to our relief .... no traffic.We were home in about hour.More like it.We jammied up,read books and the boys passed out.Taylor and Brandon went to the store,bought cider and a gingerbread house and we finished the night enjoying each others company.And Zoey ... she looked great and seemed to be feeling really good.She was full of kisses and hugs.Her numbers today were a bit surprising.Her ANC has already dropped to 400 and whites are 1.1.Numbers have dropped way faster then last time.They say it is because there are no blasts, so hopefully we will see things bottoming out quicker than last time and coming up faster as well.Her g-tube site is beginning to get red and the minute infection is suspected they will bring out the big guns,Vancomycin and try and keep ahead of it going bad, like last time.I left the hospital tonight finding it unbelievable that our life has taken a turn where we have become a family of the 4th floor.A title I once feared more than fear itself but tonight I feel so honored to be one of those families.As much as I would trade this leg of the journey for Zoey, I am,in the next breath,so privileged to be walking this road in the presence of the most amazing children and their families.The faces I saw this evening,were smiles that reminded me once again of the resiliency of even and most especially, fragile lives.Their strength and their smiles give all of us reason to keep moving forward and to keep always,regardless of the seemingly insurmountable obstacles,to keep the faith.These children are my hero's and tonight as I momentarily struggled with how it is we happened to be walking the halls of 4 East,I looked at these kids,I looked at Zoey and saw all that is good and pure,raw and honest and even amongst the suffering I saw hope.Hope, although elusive in some moments, is still present ,when digging deeper and praying harder.Hope still manages to sustain us when we are most weary and broken.Thank you 4 East for your daily reminders and your constant nudging to see the good amidst the bad and the phenomenal gift of perspective.

13 comments:

Brenda Brown said...

I have come to know Zoey and your family from Kele Giles site. My prayers are with Zoey and your whole family. When I check on Presley I always check on Zoey. May God bless you always.

Michelle said...

Hey girl-
WEll hopefully round 2 will continue to go well (all things considered) and that you guys will be blessed always...with love, peace, strength, faith and the knowledge that friends and family near and far love and pray for all of you (even though most of us haven't even met you...feels like we've known you forever)...anyway, we pray for you...always!

Cheri said...

Hi Heather, I haven't reached out yet since Reid came home from the hospital as we are still decompressing I think.... But, after reading this post about your 4th floor friends I wanted to share with you something I have been meaning to write.

While still in the hospital, Luke and I went out into the waiting room just outside of PICU one night to eat and we sat with a very sweet family. They asked if we lived near by and of course we did...when I asked them the same their response was, "no actually we are from Guam". Guam?!?....whoa! They have a little 4 month old with cancer. Their insurance suggested they go to CHLA where you are, but as you fully know that 4th floor you are on is full. So, their next choice was Long Beach Memorial.

It dawned on me as I sat and ate with them how small this world really is because it was either going to ME or YOU...but one of us was going to rub arms with this lovely family. We are bringing them cookies tomorrow...

Zoey continues to be in our prayers, always!

Kele said...

So happy the chemo is almost done and so pleased your visit was a good one... I know the Disney thing was a big plus for Jake and Joe. Love hearing about your family and the time you guys are spending together...

Jeanette said...

What a treat for your boys to have the Disney night. Glad to hear that Zoey had some better days!

Anonymous said...

I just started reading your blog but your family, and especially little Zoey warm my heart-- what a beautiful little girl with such a spirit about her.

My prayers go out to your family, you are truly wonderful people

Anonymous said...

Thank you to 4 East and to the Needhams for constant inspiration. Prayers, love, and always thinking of you. Christi Harman

Anonymous said...

sounds like the long road to LA Children's Hospital was worth it after all. for the boys, Zoey, Jess and especially you Heather. And.....think about writing that book you are a born writer!!

Love and hugs to everyone

Bluebelle

Carey said...

hope everything is going okay! we've been checking in!

i'm going to try and get a package to you today ... if not, then tomorrow. let's cross our fingers it will get to you before Christmas!!! California is a long way away!!!

Oh, and do you get snow ... ever?

Kele said...

Okay, this is a record sabatical, I am starting to get worried!

kristyc said...

I agree with Kele...hope to see a post soon! prayers and kisses to princess Zoey!!

JUST A MOM said...

No new posts? What's up?

Super glad we were able to see you guys on Saturday (Bailey's party highlight). Thank you for supporting us. Tate is going to look so handsome in his new pj's!!!

We can't wait for Zoey and Tate to finally meet.

Our love and prayers,
Alison and Gang

Taylor said...

Just wanted to let you know that our thoughts and prayers are with Zoey. We say a family prayer for her every night and are wishing you and your family all the best. May God bless you and give you strength.