It can't possibly be Friday again ...can it?

Hospital time.It's the strangest thing.Moments where it drags and others when it flies.This week flew.And I was thankful for it.Happy to put last week behind.Last week held a lot of sadness for me.Deep,raw pain for others and their journeys traveled and mainly for ones they are about to embark on.The pain for me is still there.I am just finding a better way to channel it.Or at least trying.Tonight after passing off duty to Mark, I wearily headed down stairs to the lobby of CHLA and to the parking lot elevators.As I was approaching the lobby,this beautiful music was streaming from the lobby.It was piano music.In the lobby of the hospital is a black grand piano that primary sits idol,un-played, not used,for months on end.It looks oddly out of place and it's origin and use I am totally clueless to.All I know is,that tonight it was being played.And beautifully at that.A physician,scrubs and all,sat behind the keyboard and played away.I so wanted to sit and get lost in it but home was beckoning as it was after 9 already.But, as I stepped onto the elevator,the tears just came.The music was peaceful and soothing and reminded me of how much I am missing music in my life right now.The same thing struck me the other evening when I went to the cafeteria late at night and the night shift cook had a Rod Stewart Great American Classic CD playing.I miss music.Music seems to transcend where ever life has managed to dump you at the moment.In our house we love all kinds of music.One of my fondest memories when the kids were little was when Mark would sit them on his lap,music blasting and he would have their little arms going a mile a minute to the beat and rhythm of air drums and guitar.So,tomorrow I am on a quest to figure out how I will bring music to my days at CHLA.Whether it is a simple cd player or my Ipod with a Ipod dock.All I know is that music for me is healing and sometimes,depending on what I am listening to,it is second to praying.I'll let you know how it pans out.On to Zoey.She had a few so-so days.Which her so-so's are so not a big deal compared to others on that floor.She has got that,"I need my red blood pick me up" look and her petechiae and bleeding from her gums said bring some platelets while your at it.Monday will see to that, I am sure.Other than that she is plugging away.Still waiting on counts.Still doing our best to keep our daily lives flowing the best we can.Everyone is doing such a magnificent job of it.I am so very proud of my children.Each of them teache me something new every single day.Their strength,faithfulness,resiliency,selflessness,and innate human goodness astound me ... daily.Slow and steady we go.We are almost there and before we know it we will be able to say we are more than half over with treatment.3 down,2 to go.Soon.Very soon.Please continue to lift Miss Zoey in prayer.She is doing some serious butt kicking thanks to God's grace and our prayers.That ..... and it doesn't hurt when you have the heart of a warrior.

* Pictures:the many faces of Zoey and our little friend Madison who is 4,is on 4W and has neuroblastoma.Her mom is Taylors manager at In N Out.How crazy is that?Madison is another one of those amazing kids that I have talked about who just effortlessly takes what has been dealt to her,never complains and STILL,fills those halls with her joyful personality.

"Friends are kisses blown to us by angels."~ Author Unknown

Are they the cutest or what?Zoey was SO taken by Reid that we couldn't get her to look at the camera .. at all.Reid's mom Cheri took some pictures out in the hallway when we went for a walk and maybe she captured a few with them looking our way.Hopefully she will post them when she gets a chance.But,let me say,Reid is absolutely adorable.He does the most darling thing with his eyes .... if you ask him to give you twinkle eyes he bats his little eye lashes ever so gently but quick at the same time ... you just have to see it to appreciate it fully.I think Cheri might have thought I was a bit crazy because as she emerged from the elevator a complete stranger said "There's Reid".(We told the entire floor that Zoey's boyfriend was coming.)That stranger was our very own sweet nurse Laura. Who,I might add, would like to kidnap all the little Down syndrome children who cross her path.Just a warning to all you parents.Seriously though,it was a nice little visit.So great to meet a blogging friend in the flesh.Reid is so handsome and Cheri is just beautiful.My unshowered ,wrinkly self was a sight for sore eyes .. sorry Cheri.The visit went by far too fast and the little ones were getting antsy.Playtime is not optimum in a hospital room.
ou time to say goodbye arrived before we knew it.Before they left Cheri and Reid spoiled Zoey with gifts of a soft,cozy blanket and a darling outfit, with a fun little cd/dvd.And to top it off ...Reid's big brother Luke made Zoey a very special picture for the sippy cup they brought her.Thank you Luke.The picture is perfect and so very special.We will treasure it always.Someday I would love to meet up again with our Long Beach friends.Hopefully at a park when Miss Zoey decides she has kicked this thing.Till then,thank you Reid and Cheri.So loving of you to fight traffic and parking to spend time with us.It was certainly a highlight in our week.It will be hard to compete with that.

Coming up for air .....

I should have been in bed awhile ago.But sleep would not or could not come to me.My body,although exhausted,could not be coaxed to give in and give up.Perhaps it wasn't my body after all.Perhaps instead it was my head.My head filled with a million and one different thoughts in some moments but then again, strangely feeling void of all thoughts in others.Able to string together meaningful conversations at times and at others,unable to coherently put two single words together.The first week of admission always feels a bit like submersion.We sink,like rocks, below the very surface of our lives,or life as we knew it,and we hold our breath.Struggling and fighting and doubting an praying and, just as quickly as we have been plunged beneath those raging waters,we reemerge and come up for air.Today I feel myself resurfacing but let me tell you, it is a struggle to reach the top.This admission,8 days in,already feels so heavy.I need to say and say again and reiterate, that it truly has nothing to do directly with Zoey.She is doing her thing,the very best she can.And then some.It's me.Totally and 100%,me.I am antsy and anxious and edgy and scared and sad and quite frankly ... pissed.Every single day that floor brings more questions than answers and as much as I tell myself that it is not for me to question or be given the answers,I still question and I still continue my quest for answers.Useless really.I had a lengthy conversation with Caitlin on the way home tonight.At the end of which,we decided that this leg of the journey feels absolutely surreal.I could never,ever have imagined,spending portions of my day in conversations with other parents, that revolved solely around the mortality of our children.And the weird thing is ... the words flow effortlessly.Matter-of-factly and usually there is no dancing around the elephant in the room.I could never,ever have imagined,that right before my very eyes, a very sweet,longed haired five year old roommate,would lose practically her entire head of hair in a matter of a few days.And to watch,a life altering event such as that, done with absolute acceptance and adaptability, as she pulls on a hat and skips innocently to the playroom.I could never,ever have imagined, that in my life time I would stand at the threshold of a hospital room,eye to eye with a friend, a fellow mother,holding her precious baby boy,knowing in that moment, it was quite possibly going to be the very last time that I had the privilege of gazing upon that sight.Not ever.Surreal would be an understatement.This post could be filled with more surreal moments of our new normal but in the end,the hashing and rehashing of the unfair happenings of the 4th floor gets me no where.In order to fight my way to the surface,push past the current,I must visit and sit with and process and remember,each and everyone of these surreal moments.And after,find the gift in each one of them.Somehow I always do.Ones are easier than others but I search and I find them.The other night I was flapping,tonight I am swimming or rather treading water at best.My faith continues to be the number one thing that sees me through my days.That and Zoey.And of course the love and support of our family and friends and you my blogging community.A gift in and of itself,borne at another time when life seemed darker than I would have liked it.The out reaching in comments and emails is so beyond touching.Virtual strangers that take time out of their days and use their precious moments to let us know they are thinking of us and praying for us and sending us good vibes.Many of which are fighting battles of their own and with their very own children.We are humbled.I can never and will never say that enough.On a high note ...Wednesday Zoey and I are going to have some very special visitors.We are going to meet,face to face our little buddy Reid and his mommy Cheri.They live relatively close to CHLA and well,Wednesdays the day.I will be posting pictures of that for sure.I do believe the deep,dark ramblings are over ... at least for today.Sometimes I think it is important to get this out and share, in order to help people,on some small level,understand where I can emotionally be found on certain days.Those days can also morph into weeks.Just a casualty of the process.I just hope that maybe,just maybe, the unanswered calls and emails or uncommented blogs,won't be taken personally.Some days I am just in it deep.This week I was drowning.

*Taylor and Brandon came for a visit today.What a nice distraction it was.Zoey just loves company and she was so excited when they came through that door.They brought this little push car for her and boy did she love wheeling around in that.She sits fairly upright in it,with the occasional left side stroke lean.Not nice I know ...but true.We had a number of comments on her lean.All innocent enough but when I said she had a stroke and had just mastered sitting well,an awkward silence followed.But by days end she was a pro.And the mask .... do you think it is big enough for her face?I plan on making millions when I develop that child size receptor mask for Down syndrome children.Between the size of it and the fact the straps don't fit on the back of her flat little head ... suffice it to say ...it's ridiculous.

"A human life is a story told by God"~Hans Christian Anderson

Getting late here at CHLA.I don't usually post when I am here but Mark left his computer today for me and I thought I'd do a quick post.No pictures today.I forgot the camera.I will try and capture a few tomorrow.Taylor is heading down for a visit and she will bring it along.Today was one of those days where the morning seems as if it was an entirely different day.Lots of reasons why it dragged but all too difficult to go into this late.I'd want to do it justice but this hour would never lend itself to that.Instead I'll talk about Miss Zoey.She appears to be holding her own.More than her own really.Slightly less crabby but stubborn as all getup.She was unhooked from her hydration so she is line free.Makes her moving around a bit less stressful.I worry she will yank her main line out and trust me,that would not be good.We circled the floor countless times today.A change of scenery seems to help her moods.She loves to people watch and the more hustle and bustle the better for her.Hard to believe she hasn't really been in the sunshine since October.Time seems to be passing quickly.For which I am extremely thankful for.We have a darling little roommate.Full of spunk and energy despite the circumstance.Zoey enjoys her activity level and when her little sister is here,Zoey tries desperately to peer behind the curtain,hoping to catch a glimpse of the goings on.Her nausea seems to have subsided so we have discontinued her Zofran and now ... the wait.Platelets are already dropping ..fast and the rest are following.The week is sure to bring a transfusion or two.Just a given.So we wait.And we pray.And we wait some more.And we pray even harder.This round has a different tempo to it.Hard to explain why.Not so much from a medical standpoint but primarily from an emotional side.But we move forward.At a pace set only by Zoey.She leads and we follow and for this day,today,she is doing great.Today,I hold my child and am thankful for this moment.Today I give thanks for the gift of right now.Today my heart is heavy and I wonder why it is that once again my reminder of the beauty of this day comes at the expense of a life so very young.For today,even in this room,along these corridors,on this floor, there is reason for gratitude.Hug your children.Kiss them endlessly.Rejoice in your moments.Laugh with one another.And most importantly,love one another.Honor these precious stories told by God ....by living fully and completely in all your moments.

The Little Warrior ....

In 17 hours and 43 minutes, but who's counting, Zoey will be disconnected from her 3rd round of chemotherapy. Although the days have had their ups and downs, for the most part Zoey has weathered the storm triumphantly. I don't think I have ever taken the time to explain Zoey's protocol since we began this journey, so now might be a good time. First of all, Zoey is on a treatment plan that is very specific to children with Down syndrome. And very specific to children with Down syndrome who have AML M7. It has been through trial and error and tragically, through the loss of others before her, that medical advancements have come up with a course of treatment to give these children the best chance at survival. Sadly, 20 to 25 years ago, the medical field did not even attempt to treat children with Down syndrome who were diagnosed with leukemia. What they were finding at the time, was that the treatment alone was killing these children, not the leukemia. Somewhere along the way someone decided to try treating these children with less toxic amounts and what was soon found, was that not only was it working, it was working better than when typical children were being treated who had a similar diagnosis of leukemia. Zoey's chemo is still very, very intense. AML is nasty and requires it to be hit extremely hard over and over and over again. 6 times. Each time she is hooked up for 96 hours. During which she has two drugs, ARA-C and Daunomycin, given intravenously over that time period and another, 6-TG, given through her g-tube once a day. Now, the 5th and 6th time is a bit different. It involves ARA-C and an injected chemo drug and that combined round is going to be the hardest of all on her little body.Each time we are admitted we will be in approximately 3-6 weeks all dependent on side effects and more importantly,the presence or hopefully the lack of presence,of infections.So,for people wondering and asking,we have 2 hospitals stays remaining after we arrive home from this one.A long,hard road still ahead and hardest,most of all, on Zoey. So, when Miss Zoey is cranky and irritable and has no smiles to give freely, you know why. With that said, she was full of smiles today. For everyone .... except me. She was just down right mad at me and .... her doll. As seen in one of the pictures as she is literally kicking it away. When Mark bought this doll for her we thought she would love it. Not so much. Zoey loves real little people but not this doll. I keep pushing the issue but the more I give her the doll or place it near her, well, the result is the picture. And today,totally magnified,as noted by the angry cross eyes. Zoey definitely has acquired some spunk over the last two months. Courtesy I believe of chemo. Zoey was so excited every time our door opened and a new face appeared. In fact most of those faces were pretty much medical personnel but she didn't care who it was as long as it wasn't me. She had smiles aplenty and wanted to be held by every single person. Again ... everyone but me. I think today she had grown tired of seeing my face and by evening, when her daddy walked in, she was about to leap out of my arms. Tomorrow at 3:00, the bottle containing her orangey/pinky miracle, will come down and the wait begins. Numbers will need to bottom out once again and numbers will need to rise once again. During that time we pray that her little body will fend off fevers and infections and if she is blessed and lucky enough, we might find our way home within the next three weeks. Her strength and resiliency astounds me. Seriously astounds me. All the kids up there do. There are so many children that I see daily, that allow me to see the beauty even while walking this uncertain path. Everyday I over hear some amazing, funny, insightful and sometimes, heartbreaking words, come from the mouths of someone far too young, enduring something far too unfair but somehow I stop in my tracks, stand in awe and am still somehow grateful to God for placing us on this journey. Little love is finding her way once again. Enjoy the pictures. Some are self explanatory while others,like the one with her BIGmack recorder, need some background. She loves that button. We usually record little songs for her and it is about the only "toy" type thing she really likes. Well, Zoey will not, not ever,use her hand to activate it. Only her face and as of late ... her foot. Her sleeping picture,I loved it because she only recently started sleeping on her tummy like a big girl and I really thought she looked HUGE in this shot. Not at all deceiving because she has grown so much since chemotherapy began. That is all I suppose. We were humbled once again by all the comments and emails. Please keep your faithful prayers coming. They lift us and carry us ... as always.

Help .... my arms are tired from flapping so hard .....

Come to the edge,' he said.
They said, 'We are afraid.'
'Come to the edge,' he said.
They came.
He pushed them ...
And they flew.~Peter McWilliams

Yeah, I'm tired. We all have had enough of trying to master the fine art of flying. The only one who seems to have it down, is the brave and mighty Zoey. The past 2 days have been difficult on my little love. The reality of chemotherapy and what it takes out of one so little, was more than apparent over the course of the last day or two. It seems like day two of each Round is the, hello, I hate this stuff,time period. But this child just fights through it and finds her way. This morning when she woke, it looked like, if she could, she would have asked me, "Momma, what color was that Mack truck that just nailed me?" Her eyes were puffy, her face beet red and she had glares and frown faces and tears for all that dared to come near her. Now, the good news is that by days end today, just in time for Mark and I to do our switch, she took a turn for the better. I swear, Mark must think I just out and out lie to him throughout the day when he calls to check in on her. Because somehow, someway, Zoey is all smiles by the time he walks through that door. However, it is much easier leaving her happy than unbearably miserable. As for Hotel CHLA ....it is just as I left it. Disorganized, dirty and definitely in need of some shaking up. So, in between caring for the Princess, that is what I intend to do. Actually, already started. They are either going to clean up the 4th floor or I am calling the Health Department. No joke. And,if their left hand can't figure out what their right hand is doing around there, then I swear I am going to the top. I have NEVER, in 22 months of being at that hospital, run into such incompetency on so many levels,as I have, since entering the cancer phase. And ....isn't that sad when all any of the parents up there should be doing is loving and caring for their sick, life threateningly sick, child. Instead we are crossing employees t's and dotting their i's and frankly I am exhausted doing it. But I digress. Round 3 is unmistakeably underway. Roommates, noisy halls, ungodly hours for vitals and blood draws and line changes, tell us so. It will take a few more days to get our groove back but we will get it. It seems like we always do. We continue to faithfully pray that God will watch over our mighty fighter. That His loving arms will enfold her and carry her through the days ahead. That He will continue to strengthen all of us when we are growing weary and that His amazing grace will be the driving force behind our days until once again we can bring our Zoey home again. Till then ... you'll find me still flapping.

Hotel C.H.L.A here we come .....

That would be Children's Hospital of Los Angeles.So wish I could say it stood for something far more glamorous and exciting.No such luck.I find it hard to believe that Zoey's ANC won't be over 750 today,which means,over 750 is our ticket in for Round 3.Stranger things have happened but I am fairly certain that today is the day.In fact,I think I'm as close to ready as I'll ever get.The extra almost week has been absolutely wonderful but has gone by far too quickly.So quickly that not one picture was taken with all of the kids home this weekend.I guess we were just too busy enjoying just being together.Monday found everyone heading out in their necessary directions and found me preparing for our "trip". I began the day not feeling as anxious as I usually do when we are embarking on a new round.However,as the morning has progressed that sinking feeling is creeping in.My stress level has kicked into high gear and I am impatient beyond belief.I know once I get there things will be better.It's the getting there that's the hard part.I had to run to the bank early and made a quick pit stop to our churches chapel.My prayers were mostly for peace and strength.Peace for Mark and I as we begin the chaos that comes with each long admission.Peace for all the kids,the big and small.Mostly peace and strength for Zoey's tiny body as the assault of her cocktail of drugs begins doing it's thing.So, we are off.In honor of the day I leave you with,what else ...a quote.I will keep the faith.For sometimes it's all we have.

"Faith is taking the first step, even when you don't see the whole staircase." ~Martin Luther King Jr.

A reminder awaiting me in my Inbox ...

The other night before heading to bed,I checked my email.There,a new message.Subject:Infantile Spasms.An email from a frantic mom, seeking support,for her son who had just been diagnosed with Infantile Spasms.In that instant,as I read her email,I was immediately taken back to this time last year.Well,almost this time.February the 5th to be exact.The day Zoey had her first cluster of seizures.A day that changed our life and most especially Zoey's life, forever.I composed an email on the spot.Shot it off to her and sat back.I hoped my words were enough.I hoped my advice helped.Mostly I hoped that whatever direction she and her son were heading,I hoped they found his miracle.I have to say,that from February the 5th, until Zoey found her miracle in the drug Topamax,those days were the most difficult and the darkest.Yes,even darker than the fight we wage now against leukemia.It would be difficult for me to explain the exact reason I say that and probably even more difficult for you to understand.That is unless you are a parent of a child who has suffered or still suffers from this catastrophic form of epilepsy.Infantile Spasms is a thief who comes quietly and without warning.It silently robs your child of milestones they have reached and most especially those they have yet to make.Infantile Spasms is a rare disorder and it is tremendously difficult to control and it is just,for lack of another suitable word,just plain ugly.For Zoey,I can say,without a doubt in my mind, that the delays you see in her right now are not due soley to the fact that she was born with Down syndrome,or that she suffered a stroke in utero.Or still yet,that she spent 6 months of her life,flat on her back,g-tube fed 20 hours a day,awaiting heart surgery, as far from adequate amounts of oxygenated blood coursed through her tiny body.No,I blame Infantile spasms,as does her neurologist,Dr.Donald Shields.Infantile Spasms is an insidious disorder and the reminder that came to me the other evening was actually not what you might think.I did not dwell in what was or what could have been.The email did not elicit immediate bitterness and resentment.Instead I was filled with such gratitude that Zoey has found her way out of that darkness.Out of the haze and fog that encased her for all of those months.I will never ,ever forget that dark time we passed through and I honestly can say that the memories of the long,heart wrenching days of failed medication and escalating seizures is certainly hard to erase from my mind.Pictures I look back at of that time,are adequate reminders.This blog is a reminder as well.I started this blog after her seizures began and it was a lifeline.It continues to be one.I have met the most amazing children and families.Most of which will forever be part of our lives in some way or another.One amazing little child is Sweet Sophie and her mom Elaine.Right before we were released after Round 2,a package arrived for Zoey at the hospital.In it,this darling onesie and pair of babylegs.We can't thank Sophie and her family enough for their love and support and ongoing prayers.We feel blessed that through the darkness of Infantile Spasms we found the light of their Sweet Sophie.We have to always remain hopeful,always.We must always see the light that shines before us.And yes,sometimes that light is that of an oncoming train.But we still continue to search.I thank God daily for the beacon of hope I find in these children.That even during the darkest, most senseless moments,the hope I find in their journeys,lights my way.

"From within or from behind, a light shines through us upon things, and makes us aware that we are nothing, but the light is all." ~Ralph Waldo Emerson

Not much of a post but I just could NOT leave yesterdays rantings up for another day .How about a nice quote instead?

"Each day, well-lived, makes yesterday a dream of happiness and each tomorrow a vision of hope. Look, therefore, to this one day, for it and it alone .. is life."~Sanskrit Poem

Much more pleasant don't you think?
I think somewhere in the recesses of this blog,I've used this one before.I must like it because it spoke to me again."This one day" was a good one.Never very exciting as we cannot really actually go anywhere.No park,no Target,no Starbucks.Just the car.In and out of the car to take Joe to and from school.And actually ... Zoey gets pretty excited each time I put her in her car seat.At least it's a change of scenery for her.We pull curbside when we get there though and it's a mad dash to sign him in and out.Poor guy.He said to me today,"Can I do play dates again when Zoey is all better?" and to Taylor tonight he said,'Maybe when Zoey is all better we can go to the pool again because there is too many germs there now."And as I was getting him in his car seat today he said,"What day is it mom?"I said "Thursday"He proceeded to say the remainder of the days,got to Monday and said,"Oh no,Oh no,three more days and then you and Zoey go back."See,even when I think he's not thinking about it ...he's thinking about it.We all are.But until Monday we continue to embrace each day,live it well(except yesterday;yesterday doesn't count)and we do our thing.Today,Zoey's thing was rolling.Everywhere.Since she mastered sitting during Round 1,a whole world has opened up to her.And I really think she loves her new view of the world.But she often tires,not necessarily physically,but she tires of the monotony of it so she moves.And boy does she move.Fast.She sits there,tucks her right shoulder downward and ever so gently drops herself to the ground and goes.Mostly to the cold hard tile.Our living space downstairs is very limited so besides a small, say 9x9 piece of rug,her only other choice is tile.So tile it is.There's the picture explanation and like I said,not much of a post.(P.S.I think my grout needs some major cleaning!)Another sincere and humble thank you to all of you that emailed,called(even if I didn't call you back) and commented on yesterdays post.Especially all of you that have never commented before ... those meant the world to me.I feel incredibly blessed knowing my, or rather our, support system is so very strong and mighty.It's a beautiful thing ... and I thank you for it.Each and everyone of you.Thank you.

Today I threw an impromptu pity party. Don't be offended if you didn't get your invite ...

Chances is are,if you did come,you would have left.Quickly.The guest list was chock full of some unsavory types.And when I say guest list,I use "guest" very loosely.The use of "guest" would perhaps imply I actually wanted their presence in my life today.When in fact ... nothing could be further from the truth.First to arrive were fear and anxiety.Followed shortly there after by resentment,bitterness,anger and sadness.All had equally un-welcomed companions.Impatience,intolerance,insecurity and rounding out the crew, guilt.You see where I am going with this,don't you?I mingled with each on of my guests,as a good hostess should.Reacquainted myself with ones I hadn't been in contact with in awhile.And before I knew it ,the short lived soiree was over.It was my party and I could cry if I wanted to.So I did.And that was that.As quickly and unexpected and unexplainable as this little gathering was,it was over just as fast.Thank goodness.On a serious note,I find,for me,I just have to have some moments like today or I would not be able to survive our ever changing normal.If I can visit and sit with some of these emotions and work through them,than I become better equipped to face the next moment.Now,some of my family members and friends might not be as crazy for my coping methods, so often the day ends with some much needed apologies.Forgiving myself is usually the last step to finding my way out of these necessary days.Onto a totally different subject.One of my favorites ... Miss Zoey.Mark has mentioned,a few times,as have a number of other people,that Zoey is in need of a haircut.That sounds so absurd to me.Sounds rather strange to me,to call up my friend Summer and say,"Hey,Summer,Zoey's hair has actually GROWN during chemo,do you think you could give her a trim."Bizarre.My feeling is this ...Her hair will fall out,eventually and until then I think I just want to leave it be.I'll let you all weigh in on the discussion.I say,when I see it start to go,we will give her a darling G.I. Jane cut and that will be that.Until then,we will just continue to brush her hair out of her already visually obstructed eyesight.Much to her vision therapist Christi's dismay.Speaking of Christi,our friend first and foremost,besides being Zoey's therapist,she has been a Godsend.Christi has been so supportive.We hit the jackpot the day Christi was assigned to us for vision therapy.We found a dear friend that day and Christi has been by our side every step of the way.She loves Zoey and Zoey her.She is always placing Zoey's needs first.Finding what is best suited to Zoey.Being so in tune to her likes and dislikes and working with them accordingly.She has been emotionally and physically supported to us as a family and she has kept us fat and happy with her famous lemon cake.For that and so,so much more,Christi, we love you and thank you.The day ended on an unexpected high note.Unbeknownst to me,"Lost"has a 3 hour recap before next weeks premiere ... you see there is always a silver lining.Trivial,I know but necessary for my sanity.I must have a vice of some sort you know ..."Lost" and Starbucks hot chocolate and it's all good.Now if we could just kick this leukemia thing,find cures and miracles for all my other precious little buddies, then all might be right with the world.

I forgot to mention ....

Does ANC ring a bell with anyone?Anyone?As to not leave you lingering in suspense,I will enlighten you ....Absolute Neutrophil Count.If you have followed Zoey since the beginning of her leukemia diagnosis or if you have chemotherapy experience,which I hope most do not,than you might know that this number must be above 750 to begin another round.As I posted last night,I really should have mentioned that there was an ever so slight,well maybe not slight, possibility that Zoey's count would not be high enough to start Round 3.Forgot to mention that didn't I?Sorry.I mention it now ... why?Because we are home.Yep.Reprieve until next Monday.It's not a bad thing.All her other numbers look fantastic.I mean like really fantastic.I am cautious though and actually can't believe I said fantastic.Remember my motto: never become too comfortable.Ever.Platelets,drum roll please .... 309,000.Never,ever in Zoey's entire life has she had platelets like that.Considering Zoey's leukemia is an AML M7,a leukemia of the platelet variety,I am thrilled about that.Hemoglobin ... 13.Her doctor said,I quote,"I think her hemoglobin is higher than mine."But ANC is only 550.Another day or two it probably would be where it needs to be but why risk that it's not, only to have to come back a 3rd time.Instead we'll give it five days and it should,I emphasize should, be above 750.With Zoey,you never know.It was a lot of physical and emotional preparation for the day but we are home now and actually just getting a blood draw and looking at her numbers gave me peace.So ... to all you amazing people who left us such loving comments,I won't ask you to re-comment Monday,I'll just copy and paste.Kidding.But seriously,I was very touched by the comments today and I thank you from the bottom of my heart.Zoey thanks you.We all thank you.A bonus on the extended hiatus is that Caitlin and Danny and Jess will be home this weekend.I am so looking forward to that.Well,I'm exhausted.Zoey's is sound asleep in her own bed and it felt so nice to put her there.I plan on cherishing the gift of these 5 extra days.I will post pictures and maybe even a video to prove it.Now, I won't be actually IN any of them but I will force the rest of the family to oblige.Me,cameras ... not friends.Goodnight folks.Again thanks for the prayers and well wishes.Keep them flowing.

And tomorrow comes .....

"Courage, it would seem, is nothing less than the power to overcome danger, misfortune, fear, injustice, while continuing to affirm inwardly that life, with all its sorrows is good; that everything is meaningful even if in a sense beyond our understanding; and that there is always tomorrow."~Dorothy Thompson

Taylor ever so sweetly wanted to do the night time reading ritual with the boys.I thought I would take that opportunity to do a post before it got too awfully late,as I have a ton to get ready to prepare for Round 3.Hard to believe that it is time already to head back.Am I ready?I suppose.Ready to get on with the next phase.Which means we will be one step closer,God willing, to placing this latest obstacle in the faced and overcame column.What I am never ready for is leaving the other kids.And Mark.Life is fairly complicated here in the Needham household.Some of which I will share and others,well,let's just say ... the timing is not quite right.The big girls are all in such crossroads of their lives right now.All managing and doing a fabulous job of juggling and living but still needing me.Jess just began her last semester at Pepperdine and is busy wrapping that up,while working and interning at Amgen as a trainer in their work out facility.It sure would be nice if that parlayed into a full time gig after graduation.Her boyfriend of almost 3 years,Matt, has committed to a job here in California.A big question mark in their future answered but with it, the knowledge that that decision made for some very sad family back in Chicago.I promise to love him as my own Jean.And then there is Caitlin.Caitlin continues to do her amazing job with Community Catalysts of California.A full time job, as well as going to school.She is about to embark on one of life's most rewarding yet challenging experiences ever and I only wish I were closer to lend support both physically and emotionally.And Miss Taylor.A soon to be high school graduate.So sure she wanted to test her wings and fly far away to San Francisco for Special Education,is now debating whether that is the place for her.She has a boyfriend,Brandon, who has committed to Arizona to play football and with that,young love,feeling the pangs of an uncertain future.I wish so much I could ease their way but in the end it is their way,not mine.I hope they know I am here,always.Even while holding their baby sister during chemo,I am still here for them.Then there are the boys.Jake has amazing adaptation and coping skills.I worry less about him than I do Joe.Jake made me cry tonight though.I was getting ready to take Zoey to bed and told the boys to say goodnight to her.Jake very lovingly came up to her,gave her a big hug and said,"See you after round 3 Zoey."So very sweet but so sad at the same time.And Mr.Joe.He is one complex little man.We went to a doctors appointment on Saturday to discuss his new medication.We started him on Clonidine about 6 weeks ago for his ADHD.Joe's issues are that, with a major impulsivity component and associated rage as a chaser.Throw in some OCD and you have complex.However,we see glimmers of hope with this medication but it has been a battle to balance the drowsiness side effect.I HATE to see him drag like that but hopefully he will begin to adapt to the dosages before long.So ... you see .. they all need me and I them and this is not forever and as long as we see it that way,we will find our way to the other side.As for my day ... I wish I cold say it got better.Let's just say that I had to break into my emergency cache of Xanax.Late this afternoon I found out that my dear friend has been diagnosed with breast cancer.Talk about a shot to the solar plexus.I was speechless.I felt helpless.I gathered myself and realized it's not about me and how I feel but about her and her family,who I love.So I called and told her WE will all get through this together.Parallel journeys,different but the same and both rooted in the same positive,faithful and hopeful philosophy that our two families will absolutely fight these battles and win.Tomorrow comes ...

"When it is dark enough,you can see the stars"~Ralph Waldo Emerson

It seems as if we have been in a constant, ever changing reality over the last 2 years.Some realities have been easier to swallow and digest than others.Without a doubt this latest chapter, known as "after diagnosis", has certainly been the most difficult.On October 29th of this past year, Zoey was officially diagnosed with leukemia.That day is etched vividly in my mind and on my heart.And tonight the recalling of that day and the reality of what we were stepping into came crashing,full force,without warning .... straight through my heart.On that day in October,as we waited for Zoey's doctor to come in and give us the results of the bone marrow biopsy,I stood in the door way of the 5th floor clinic room and gazed out at the people milling about.I watched little faces pass me by.Some with wide toothy grins and others hidden behind masks, far too big for those little faces.Parents pushed strollers.Parents pushed IV polls.Parents carried children and siblings trailed obediently behind.One little girl caught my eye.She was dressed in a darling cheerleader outfit and I believe she was carrying a McDonalds Happy Meal box.She skipped behind her daddy and coming behind them, was mom with a tiny little guy dressed in a black Halloween outfit.This little tow head baby boy, who looked to be maybe one,was tucked snuggly and safely in his mommas arms.So cute he was.I lingered in the doorway anxiously awaiting Zoey's doctor and unable to stand still much longer, I wandered into the hallway.As I entered the hallway and turned left,the door right next to us was open and there was that darling family.I stopped,the little girl waved and the mom commented that her daughter doesn't often respond to strangers, so I should consider myself lucky.I did then and I absolutely do tonight.For on that day, in that moment, I met Gracie and her mom Laura and dad John and most especially her baby brother Luke.Our conversation was brief but I found out in the few moments we had to chat, that Luke had neuroblastoma and he was fighting like crazy to beat this nasty thing that had invaded his tiny,tiny body.Their doctor came in, we said our quick goodbyes,only to meet back up a short time later on the 4th floor.I watched Luke circle the the floors of 4e and 4w with his mom and grandmother.I watched as Gracie came for visits and dad came to relieve mom.I watched a family fight for a baby that they love with all their heart and soul.Tonight I learned the unfathomable.Luke's cancer has returned with a vengeance and now comes a time to make a lifetime of memories, in what won't come close to being enough time .Ever.I love this tiny warrior.I have always had the overpowering desire to grab him from his mother's arms and hold his little body and rub is little back.I have never been so bold.I wish I had.There is just something about him.Tonight I am sad.Sad beyond words for this family.Sad for our new reality that holds the ever present and very real possibility of replaying this very scenario over and over.And in some moments, I must go to a place,ever so briefly,ever so selfishly and wonder ... will it,could it,be us one day.These fleeting thoughts are what force us to live fully in our moments.Our precious,irreplaceable,here and now moments.And somehow,despite the deep sadness,I emerge changed for the better.Changed because of the courage of ones far younger than I and far stronger than I could ever be.Please keep Luke and all who love him deep in your prayers.It truly is all we can do.

"That it will never come again is what makes life so sweet" ~ Emily Dickinson

There was a time in my life where I would have found myself stuck on "that it will never come again" part.A time when I would have let the sadness of that thought creep too easily into my everyday life and way of thinking.No longer.Of course there is the normal measure of humanness that stirs within us when we dwell on the fact that life is in fact finite not infinite.At least not when it comes to our earthly bodies.Seeing the sweetness in the here and now is truly the key and at the same time our greatest challenge.It has taken a life time,mine, and actually a life ...Zoey's, to allow me the clarity to see that. Now,I would never wish for anyone to have to walk the walk we have,in order to see that sweetest but it is also my profound hope, that in the sharing of our journey, that the succulence of our daily lives,your daily lives, be felt more and lived more.Kinda deep for a Saturday I know.No particular reason.The stillness of the house perhaps.A peaceful sleeping little one maybe.Or maybe even yet, just knowing my other children are out soaking up the sun.Living their lives,freely and with the blessing of health and well being and praying at the same time, that I have done enough to instill in them, the knowledge they are loved ... always.I leave you with a few pictures.I try and take some everyday.Hoping not to miss any of that sweetness.Most are of Zoey.Yes, I do have 5 other children but it seems to me, that as of late this is the all about Zoey show.All Zoey.All the time.She is the center.Our compass.Our daily reminder to stop and savor the sweetness.

*I could scour the earth for every toy under the sun for Zoey, to help with her cognitive and developmental growth and when all was said and done she would circle back to her absolute favorites: books,fabric and people.People,as in flesh and bone people,not little Fisher Price ones.She is absolutely indifferent to toys.With the exception of musical instruments.Those she likes.As for the others .... she could do without the whole lot of them.And trust me, I have found some really cool stuff.Oh well,she is nothing if not consistent.Beautifully simple and yet so complex.Gotta love that girl.

The beauty of our days ....

One week.That's how long we have been home already.The days are going far too fast and I know Tuesday will be here before I know it.It has been so easy to fall back into routine of everyday life.Although due to Zoey's compromised immune system we are housebound and our routines revolve primarily on our daily lives within these walls.But I am not complaining.I am instead cherishing.Being home has lent itself to a few minor breakdowns.From me.Nothing too extreme.Just the reality of our life and the road ahead and the uncertainty that it holds.Last night as I went to bed I stood over Zoey's crib and just watched her breathe.I marveled in the size of her body and how fully she fills the space nowadays.Mark stood with me and I started to cry.I spoke what did not need to be spoken ... how much I loved her.He said ... we all do.To which I replied ...what if that's not enough?Knowing as those words left my lips how silly they were because how we all wish it were as simple as just loving them.So many families would not be where they are if the beauty of loving these children were all it took.I climbed into bed and out stretched my arm into the crib.For a moment wanting to selfishly pick her up and just hold her and rock her.I let her sleep.I gave into my own exhaustion.My dreams were of the hospital variety last night.Nothing I could vividly remember.Just the hospital.Our second home and a place that holds such a large portion of my heart nowadays.Not only for what it means to Zoey and her journey but for the families and children that I think about and pray for everyday.Their faces imprinted on my heart ... forever.For now,today we bask in the beauty of these days.The beauty of Zoey.Watching her take in every aspect of her surroundings.I see this new light about her and I am amazed that such growth,both physically and cognitively has seemingly taken place during what has been one of the most difficult onslaughts to her tiny body yet.She is a warrior in every sense of the word and I tell her daily that she is the bravest girl I have ever,ever known.Tonight I say some extra prayers for strength for some other tiny warriors that are in some very pivotal moments of their battles.For Thomas,and Luke,and Madison and Gavin ... we are so proud of you and ask that God continue to watch over you and bring to you and all who love you,peace and grace in the days ahead.Thank you to all of you for your daily check ins. We continue to be awestruck by the outpouring of love and support.All of it lends light to the beauty of our days.

*Scroll down for more pictures

More Pictures ....

Once again a huge thank you to my dear friend Kele,mom to darling Presley,for taking the time to put together another beautiful collage of Zoey's latest round.I think it is remarkable that Kele found even a few moments in her busy life, to do something so special for us.These collage's offer an opportunity for us all to take a quick glance back at where Zoey started at at the beginning of a round and where she is today.We are so blessed that these first two rounds have found Zoey doing better than any of us expected.We can only pray that with each passing round she continues to do what's got to get done, in such amazing Zoey fashion.I don't have the exact measurements but Zoey has grown approximately 2 inches and gained over 3 pounds since she began treatment in October.I find that beyond belief.Beyond what I ever thought would be the way this all would progress.Her personality is really coming out.Although she continues to be a pretty laid back child,she is beginning to show us another side.A stubborn one.Without having any words or really any sounds to let us know what she needs or wants or better yet what she doesn't want,she lets us know with actions and facial expressions.She has this new scowl face she gives and she VERY deliberately pushes away anything or anyone she doesn't want a part of.One constant is that smile of hers.Her smile continues to light our way and give us the hope that we all will one day see our way through and out of this latest obstacle.That she will find her way out of this latest fight.As it stands we have the week at home.Because they sent us home with such a low ANC count,20,they do not anticipate her number to be up to 750 until probably next week.The plan is to head down next Tuesday and re-access her port,draw some blood,see if we are ready and then admit.If for some reason and with Zoey you never can tell,if for some reason she is not ready then we go home and re-do the whole process a few days later.We will embrace these days at home as they will go far too fast.Yesterday I had a very difficult time sending everyone back to their routines.My children give me a hard time because if I had it my way we would all live together,all the time,forever, and as we grew in number we would create a Needham Compound where we all lived next door to each other.A girl can dream,can't she? But I do know that dream it is slightly selfish of me as I also know everyone needs to forge their own way.Without me.By days end I was better and realized back to routine isn't so bad.Necessary actually.Everyone does such an awesome job of adjusting to our ever changing normal.I am proud of each and everyone of them.And often wonder how I came to be so absolutely blessed and lucky.

On the subject of hair .....

As coincidence would have it, I was planning on posting today about Zoey's hair and I actually received a comment that included an inquiry on Zoey and her not appearing to have lost any hair yet.As you can probably see,Zoey's hair is as crazy as ever.Zoey and her hair have been a topic of conversation since birth.She was born with her fair share of it but by a few hours old she had had her first "haircut".Not by design but by necessity to keep her alive.They accessed major veins in her head,the easiest for babies,to stabilize and administer much needed medication.It was a relatively minor "haircut" at first but when she took a turn for the worse a few weeks later,a more extreme "doo" was in order.In the NICU Zoey's hairstyle was dubbed a "Zo-hawk".A name that stuck with her until her hair grew in more uniformly.Then there is the color.Her hair color is not like any of our other children.And much as I would like to say she "got" it from me,mine comes courtesy of my friend Summer,every 4 weeks.People are forever commenting on the color and I wish I could tell them who she gets it from but like everything else,it is unique to Zoey.When Zoey was first diagnosed,I ever so briefly thought about her losing her hair.But it was brief and fleeting and all I truly cared about and still care about is that she conquer this latest battle.Hair will grow back,really absolutely inconsequential.When we talked to the nurses,as chemo began that first week,we did inquire as to when they usually see the kids lose their hair.Their response was the same as it always is when we ask broad spectrum question,"Every child is different."So here we are,end of Round 2 and Zoey still has not lost any of her hair.Perhaps it is slightly thinner but nothing really to speak of.There is another little girl who has Down syndrome and AML on the 4th floor,Sol Merie is her name,she is at the end of her 3rd Round and she too has not lost a bit.In fact there are moments when I think both girls hair is actually growing!I did ask the doctors,a question I felt silly asking but asked anyway,I asked if it meant "it" is not working.He said he hears that same question from other parents and no,it has nothing to do with anything.And since we do know "it" is working,the hair thing again becomes inconsequential.So we wait,like with everything else.One day it will begin to fall out.Unexpectedly and without warning.I will most certainly have a twinge of sadness but like everything else that has come our way on this journey with our little Zoey,we will find the silver lining.Like the fact we get to see her sweet little flat back of her head.It always was one of our favorite things about her when she was a baby.I can't wait to stroke it and reminisce about when she was ever so tiny.And after all is said and done,when her hair begins to grow once more,we will marvel in perhaps the new color or new texture.Just another thing to look forward to.Another new chapter in the chronicles of Miss Zoey.

"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell." ~Lance Armstrong

I found this quote today and thought it was fitting for Zoey's blog. For Zoey. This quote embodies her spirit and that spirit is what catapults us all through our days. That indomitable spirit enables us to face whatever comes our way and forces to never, ever give in and to never, ever give up. Ever.

I could think of no better way to start off the new year .....

.... than to bring Zoey home.Yes folks,Round 2 is officially over and I didn't even see it coming.Pleasantly surprised to say the least.Overjoyed actually.After a very,shall we say,disappointing day yesterday,today more than made up for it.Yesterday found me rampaging 4 East.I certainly did not make friends on the floor but then again that is not my goal.My goal is to ensure that Zoey and all the kids up there have a chance at getting off that floor with minimal sidetracking.Meaning,few if any opportunistic outside bugs finding there way to their compromised little bodies.If that means making enemies then so be it.It began with me waking yesterday wondering why on earth did every other room,except ours,have isolation tables outside them.Tables holding gloves,masks and robes.Within an hour the nursing assistants entered to do vitals,all garbed up and we were told that the Norovirus was all over our floor.In layman's terms the Norovirus is a highly contagious stomach flu.As the day progressed,several staff members and other families told me of the virus being present or at least suspected since last Friday.No precautions taken completely until yesterday and by then it was too late.It seems as if Zoey and her roommate were almost solely the only ones spared.Even the staff was being hit by it.The day went from bad to worse as more information trickled in and all I knew was I wanted to get the heck out of there.But with an ANC of 10 yesterday,it didn't seem likely.By shift change,Zoey's night nurse came in and informed me she would not be touching Zoey because she called in earlier in the day and told the charge nurse she had thrown up and the charge nurse proceeded to tell her that unless she had intestinal issues to come in anyway.So she did and I was ticked.Night shift,I think,hates me.I proceeded to grab the night manager and ask her why on earth did the 4th floor not have a more stringent policy on keeping that floor as germ free as possible.I took her to 2 other floors where signs are posted instructing hand washing and sanitizing wipes being used upon entering and leaving the floors.Pretty simple if you ask me for a floor where it is literally a life and death situation for these immune compromised children.She posted some temporary signs until she could find more official ones and maybe just maybe it is a simple and easy step to help the spread of viruses like this one.You can't patrol each and every person but maybe this will bring some awareness.I finally went to sleep and was awoken with our little neighbor throwing up at 4am.Poor thing.Although hers was more than likely due to a chemo push at midnight,it did get me started on figuring out how we could get the heck out of dodge.Blood draws are m-w-fri but I insisted we recheck this morning.The very charming,not,night charge nurse was very difficult and would not accommodate my request until a fellow came in at 8 or 9.I was fuming.I went back to sleep only to be awoken by Zoeys attending saying he looked over her numbers from yesterday and felt very comfortable her marrow was in the late stage of recovery.He said of course we could do another draw and after the next test results came back we were given the go ahead to pack and head home.Her ANC is still low but by looking at different factors in her blood they know her ANC will be taking off in the next couple of days and the risk of keeping her on a floor, where it was probably just a matter of time before she got sick,was not worth the price.So home we went.Surreal at that.24 days for round 2.The exact number of days as round 1.I left with a mix of feelings.Nervous about coming home without the safety net of the hospital but absolutely beyond elated to be coming home.We will have the next 3 days together before winter break ends and routines begin again.I will miss our "family" back at Childrens.I will worry and wonder about all the children I have come to love but I will make the very most of our time together before we head back in a week or so for round 3.I left feeling extremely blessed.To be taking home this child that is healthier then she has been in a very long time.A child with a daunting road still before her but a road paved with the love and support of old and new friends and a family willing to walk to the ends of this earth to lift us and carry us when we need it.We are so lucky to have doctors and nurses and staff members to make themselves available to us.To make us feel secure,in most moments, that they too will do anything and everything for us.For Zoey.I may not always agree with some of the decisions or the protocols in place but I do know that in the end,we are in the very best of hands.So tonight my baby sleeps in her own bed.Cozy,warm and safe.And although I have no idea what this new year will hold for any of us,I do know that this very first day of 2009 was magical.Zoey came in the house and turned to each of her brothers and sisters and gave them individual waves.It was precious.She is precious and we are so very blessed.