Monday, October 19, 2009

Marathon of pictures .... of the marathon

This post probably won't begin as some might have expected. I could have begun by filling you in on the weekend and all we did and all we experienced and all we were touched and changed by but instead I have to share something far more important. Something I have not and probably never will, come to understand or make sense of. Something I have carried, heavily on my heart, on our hearts, this past week. Something that made our participation in this marathon all the more necessary.

Shortly after I published my post last week, we were absolutely devastated and blindsided by news that came about a simply darling little guy named Malachi,or Kai,for short. Kai, as you might have guessed and may remember from some of my other posts, is a fellow 4th floor warrior.However,we already knew of Kai and his family, long before Zoey was diagnosed. You see, Wes, Kai's dad, is the cross country coach and athletic trainer at the high school where the girls graduated from.Small and so closely connected our world actually often is,isn't it? Kai was diagnosed with Acute Lymphobalstic Leukemia,or ALL a full year before Zoey was diagnosed with AML. We followed Kai's progress from the beginning of his journey and when Zoey became a CHLA regular, we were blessed to spend time with not only him but his amazing mom and dad. Kai was not usually inpatient, as his leukemia was in maintenance, and unless he spiked a fever, we only saw him at clinic. Then, in December of last year, after 14 months in remission, Kai relapsed. The national marrow bank was searched and a very successful bone marrow drive was organized on Kai's behalf but a match was not found. Soon after the drive however, a compatible cord blood donor was finally found. Kai went into the BMT unit at the end of April and spent 100 plus days there before being released in August. Last weekend Kai was admitted with a fever and an infection in one of his central lines was found. Not an uncommon occurence with kids with ports and lines. While undergoing some blood work, immature blood cells, or blasts, were found. A subsequent bone marrow biopsy was performed and soon, Wes and Rachel's, worst fears became reality. Kai had relapsed for a second time. The Smith family was faced with some unimaginable decisions and in the end, they have decided, to take Kai home and allow him to be free of tubes and pokes and chemo and all the horrible other stuff that goes along with this awful, unfair disease. This week Kai will have an expedited Make-A-Wish granted, and he, his mom, dad and older brother Ethan, will go and play and make beautiful memories at Disneyland.

Kai is 3 years old. Three. I'll repeat that: KAI IS THREE. Over two years of his little life has been spent enduring more then any of us could ever possibly imagine. But he, like so many of these children we have met, have battled, with more grace and fight and forgiveness then any of us could ever imagine . I am void of words or as I said before, void of understanding .I am only able to extend my love and faithful prayers to Wes, Rachel, Ethan and most especially Kai. A sweet boy who should be making a lifetime of memories and living a lifetime of firsts but instead is taking a journey that none of us has the ability to change the course of.

Team in Training
raised 14 million dollars for the Leukemia/Lymphoma Society this weekend at the Nike Women's Marathon. Believe it or not, it's still not enough. There still is no cure and there are still countless other children and their families journeying down the same unspeakable path as Kai and his family. Something has got to change. It just has to. Please keep Kai, his family and all who love them, in your prayers and send them peace and strength for the journey that lies ahead.













For some reason I totally reversed these pictures. Last popped up first. All are fairly self explanatory. Notice our personal cheer crowd in their Pablove t-shirts. If you haven't checked out the foundation that Pablo's family has established, please do and also keep up with the amazing cross country trek Jeff,Pablo's dad, is doing on his bike to raise awareness and funds for pediatric cancer research. Wanted to say, Jess and I had smiles on our faces at her mile 24 and my mile 12.5 but ... pictures really do lie!

24 comments:

Anonymous said...

We are sooooo proud of you 2!!!!We wish we were there to cheer!
Love,
Lisa and Michelle

Alisha said...

I will pray and think of poor Kai and his family. So heartbreaking ...

Reagan Leigh said...

Poor Kai. What an excruciating decision for his parents. Unimaginable. Love the pictures from the marathon! You look very stylish in your sunglasses and running attire! Glad to hear from you and that all went well with the run!

Claudia said...

Love you all.
You know.

Tish said...

We are following the heartbreaking story of Kai on CaringBridge, and we're praying with all our hearts alongside the Smith family.

I was reading your post during the song "You're so amazing" and have goosebumps, Heather. Looking at photos of your family up in S.F. with the Pablove Foundation t-shirts is just the way I need to start an inspired-driven day; it certainly gave me a boost to continue the trek toward a cure for these countless, remarkable, beautiful children.

We love you. Thank you for sharing.

Dawson said...

Heartbroken....

So glad to have you back.

I admire you for your efforts in running the race. I get winded running to the mailbox when its raining

Much love from us to you and your family!!

Denise said...

Thank for sharing Kai's complete story. I know you have mentioned him in a few recent posts but I really didn't understand what all he had been through. I am just heartbroken for his family. It really is so unfair!!! And so hard to understand. You and your family are doing everything you possibly can to help in finding a cure for this awful cancer and you should be very proud of yourselves. Congratulations on finishing the race...both of you.

Lacey said...

Oh I've missed you and been going crazy knowing how you guys did. That picture of the bridge is breathtaking. I'm loving those Pablove shirts too. Welcome back!!

stephanie said...

Love it!!!!!!!!!!!!!!

scrappy quilter said...

WTG you two. That's awesome.

So sorry to hear about little Kai. What a hard decision for a family to have to make. Hugs and continued prayers for your Zoey.

sheree said...

I'm brokenhearted over the news about Kai. I will definitely keep him and his beautiful family in my prayers.

My name is Sarah said...

This is Joyce. Tears pouring here for so many reasons. Heather, I truly feel so sincerely blessed to be able to share in your writings. Awesome accomplishment with the marathon.

Kele said...

Will be thinking of Kai and his family... makes my heart ache.
Congrats on the marathon, loved all the pictures, the Pablove shirts are awesome!!

Stephanie said...

No explanation necessary, I think you already know too well where I stand on the subject of our babies fighting the beast.
They are in my every prayer.

I am so proud of what you accomplished with the marathon. It may not be enough, but you know what they say about every great journey...
and with every ounce of love and fight we have, there will be a cure one day.
There has to be.

P.S. I absolutely adore the Pablove.

Michelle said...

Oh friend...I am so proud of you and your beautiful family. You are an inspiration to so many. Love the photos of you both running...my heart is full of joy and love for you and for all you give. My heart hurts for Kai's family today. Such a horrible battle it all is. I pray for their peace and strength and for understanding for us all. And finally I pray with gratitude for having the best friends in the world...love you!

Anonymous said...

Congrats to both of you! The photos were truly awesome. Just want you to know, I was out at "Otisco Lake" on Sunday and we kept eyeing the clock and wondering how you were doing! Very sorry to hear of Kai - such a terrible decision to have to make

Love to everyone
Bluebelle

Peter Olson said...

Great Job! Beautiful pictures! Beautiful people!

Remember to take a stress break.
It is harder on caregivers then on patients, over time especially.

I prayed for Kai & his family and you guys too!

Love,
Peter J. Olson

Anonymous said...

I stumbled across your blog when doing some research on chewy tubes for my son. Although a stranger to you, please know tonight as I read Kai's story and that of your family you have touched my heart in a deep way, bringing tears to my eyes. I don't understand why such things happen in people's lives, and suppose we never may, but I pray God will comfort you and continue to give you strength. Way to go on the marathon! We just had ours here in Chicago a couple of weeks ago. You inspire others.
Blessings,
A young mother who has your family and Kai's in my thoughts and prayers

-Jer. 29:11-

Googsmom said...

{{{HUGS}}}} and Prayers for Kai and his loved ones.

Judy said...

Praying for Kai and his family. Heather, you are my hero! I pray for your family daily as well. (((((hugs)))))

Alisa said...

Hi Heather (it is Alisa from TNT) I just stumbled on to your web site ad just wanted to drop a quick comment saying "hello" and that I enjoyed seeing you again yesterday and chatting with you for a bit. Zoey's story is one that touches my heart from the first time I heard about her. I was so happy to hear that she was doing well yesterday. You are in my prayers.

And Kai - please let his family know I'm thinking of them. I heard about his dad last season and of Kai. I too have thought of them often and was just shocked to hear about him yesterday when Elise spoke about Kai (I'm not sure if you were still there) and now reading it on your blog makes the tears come back. I so have no words to express other than I can't imagine what they are going through. I hope the MAW trip was incredible and put the thought of cancer from their minds if just for awhile. I pray for them too...please let them know if you speak with them. Words can't express.....

Alisa (mom of Aidan)

Anna said...

missing you. Love the pics and the update! You are amazing!

therextras said...

Praying for Kai.

Barbara

Samantha said...

What an amazing thing you did! I love the Pablove shirts!

I am so sorry to hear about little Kai. I can not imagine how hard it must of been to reach that decision... And it just breaks my heart that ANOTHER child will loose their battle against this terrible, terrible disease...