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!!