Sunday, October 25, 2009

"THE" WEEK ....

I have come to this computer no less then a dozen times over the last week and each time .... nothing.Lots to say but no way to clearly put the words and emotions in writing.The news of Kai has hit me hard.I feel so absolutely helpless with no adequate words or actions for his family.So,instead they remain the very first thing I pray for before I go to sleep and they are often the very first thing I think of in the morning.I usually head down bleary eyed and turn on the computer and check to see if there is a caringbridge update or facebook status.They were able to head to Disneyland on Thursday for their Make-a-Wish mini trip.They packed in a ton of memory making moments in a few days but in my book,still not enough.Rachel,his mom,posted that Kai was struggling this morning, so they headed back home.I hated to read that.Not unexpected,but hated reading it nonetheless.So now, all I or anyone else can do,is pray our hearts out for peace and strength for all of them in the days ahead.I feel like anything I have to say here is so inconsequential compared to the journey they are taking.So insignificant in the big picture.But tonight I decided it was time.

This Tuesday,the 27th, we hit the one year mark when our introduction and walk with the world of pediatric cancer began.Come to think of it,sometimes it was a walk,other times a run and sometimes a barely moving,going through the motions time.This week marks "the" week when our lives forever changed and difficult for some to understand, not all for the worse.But in some moments I wonder and question that myself.In these heavy sighing,heartbreaking Kai moments,I really wonder.When Zoey was diagnosed, I could never have imagined the tremendous joys and deep,bring me to my knees sorrows, I would simultaneously feel.But here we are and most importantly here Zoey is.We have,in the words of her oncologist this week,made it through one of the most pivotal times in the treatment of AML and that is the first year.This is a milestone.One to be celebrated and savored and shared.This past Monday,Miss Zoey had her port removed as well.Another amazing milestone.Her port was placed on the 30th of October of last year and you know,there are so many moments over the last year,so many pictures and events that have been,in many ways,erased from my memory,however,the day she had her port placed,I will never,not ever, forget.That day, when they ushered Mark and I back into the recovery room and I saw her with this metal foreign object sticking out under the skin of her precious chest,I wept and I,once more, apologized to my tiny daughter,over and over and over again, as I rocked her back and forth.I apologized for not being able to protect her.And everyday since that day,I have lifted Zoey from under her little arms and I have felt that reminder of not being able to protect her.So strange to not have it under her clavicle anymore but so very,very wonderful.Now,all that remains,is just another scar to add to her extensive collection of war wounds.Dr.Gaynon,her oncologist, is cautiously optimistic.I asked him to put in writing that everything was going to be alright and he said sure he'd do it but it wouldn't be worth the paper it was written on.I love this guy.A genius and has been with us since day one of Zoey's birth.I trust him and that makes all the difference in the world to us, as we travel the months and years ahead.We are back right before Christmas for another lab draw.This past weeks numbers were fairly decent.201,00 for platelets,which is up.14.7 on hemoglobin which is about the same and white count ... 2.97 and an ANC of 950 which is so-so and down from 1500.Which indicates that the sooner we stop Bactrim the sooner that they might rise.One more month to go on that.

Zoey did really well with her surgery.As usual.Unfortunately though, when ever she is put under,her little intestinal tract,that is so slow to begin with,just kinda stops.So poor girl has been oh so not happy with tummy issues.I think we finally got a handle on it today.Hopefully.We had a little Halloween party this afternoon.We had one planned last year,at Jake's request but leukemia kinda put a damper on that so we threw together a little one today.Bobbed for apples.Made caramel apples.Pizza and lots of junk.Kids had fun and Jake,my little entertainer, was thrilled.

Lots more to share but I think I probably have lost a few of you by now anyway.I'll wrap it up and try to not let as much time pass in between posts.Please keep sweet Kai and his family in your prayers.Peace for the road ahead.Grace for the times that they are weary and fearful and uncertain.Strength for when they question their resolve.And love which is stronger then this all.

*We went to the pumpkin patch a few weeks ago.Couldn't get the three of them to all look at the camera at once to save our lives.A few pictures from the gathering and check out Zoey's darling outfit.A gift from our dear friends in Texas.Thank you Tera and her very talented mom ... who has a business and makes all these little outfits.Fits perfect!!


Dana Janowicz said...

I will continue to pray for little Kai and his family.

Love the pictures. The boys are hilarious with their "boy" costumes.

Reagan Leigh said...

Oh my goodness, she looks too cute in that outfit! I'm so glad it fits. Nice to see you all have had some fun as well. I know things have been a little somber around there. One year probably feels like a lifetime...but you'd never know it by looking at Zoey! She is such a little fighter.

Anonymous said...

Beautiful pictures!
As always you do a great job there.

Praying for Kai.

I'm so happy to hear that Zoey's port is removed. It is a great feeling to not have that extra junk. But, it is nice not getting poked. That's the only advantage I can see to the port. ;-)

It's great to hear from you, Good News or bad. Of-course you know that we all prefer the first over the other.

God Bless you all!

Googsmom said...

{{{{{HUGS Heather and Zoey}}}}

Lacey said...

Oh my gosh that outfit is way too cute. I miss you guys and my sweet Zoey so much. Ray applied for a job in LA with the company he is already with. Mostly just to see what the pay is, who know, maybe its enough to get us there and finish school in Cali.
Praying for sweet Kai's family. Every time I here about breast cancer I wonder why we aren't concentrating on our kids cancers, which tend to be so much worse.

scrappy quilter said...

She does look so cute in that outfit. What a treasure.

I so enjoyed all the pictures. It's wonderful to see this post. I was getting just a bit concerned. Hugs

Jeana said...

We'll pray for that little one's family. You little one is amazing and so are the milestones she's reaching.

stephanie said...

Thanks for another good cry.
That outfit is outrageous!!!! LOVE IT! She should wear it everyday!
I adore your boys, those faces are so beautiful. Looks like one heck of a good party.
Congrats on the port removal, that's awesome!
As always keeping Kai and his family in our prayers. And you and your family ...always.

Tina said...

Kai's family is in my prayers. Such a heavy heart reading about what they are facing right now.
Love all the costumes, the pictures are beautiful.
One year needs to be celebrated, even if it is in everyone's heart. Zoey is such a wonderful, amazing strong child, she will carry on fighting! She along with so many amazing children remain in my prayers each day :)

Anonymous said...

Way to go Miss Z! port... outa there! My, oh my what a year you've had little one! (As did all your family)

Great photos - glad Zake got his party the pumkin patch photo and just plain good to have your blog Heather.

Prayers being sent for little Kai and his family.

Love & hugs to everyone

Aunt Bluebelle

sheree said...

I will definitely keep sweet Kai and his family close to my heart. I know it's hard to hear stories such as heart breaks for you as well.

Love Zoey's outfit- waaayyyy too cute!

Anonymous said...

Darling Halloween getup on Miss Zoey! Your friend is seriously talented.

My friend Jen Mihalko did the run in S.F. last week. It's a small world. She's an OB/GYN at our county hospital. She's seen a lot.

Take care, Jenefer in San Jose

Katie Epstein said... are amazing. I love reading about Zoey and her journey...I will keep thinking good thoughts for Kai and his family...and finally...I love that through all that you are going through, you manage to have a Halloween party...the boys certainly look like they are having fun.

Dawson said...

So glad to have a post from you. Its nice to be able to get my Zoey fix.

The pics are awesome and she sure is a sweetheart... But I guess you already know that right. Would love to be able to give that girl a hug in person one of these days!!

I can't imagine the pain and worry and uncertainty that comes with personally knowing Kai and that family... So I will pray for peace for you and for that family.

Samantha said...

I am so glad to hear Zoe is doing well! She looks ADORABLE in her spunky little outfit!

You have traveled down a road that many of us will not know, and you have done it with grace. Thank you for sharing your journey... it is not wasted or taken for granted...