Heading into the weekend ....

This weekend should hold pretty much the same as last.Primarily, preparation for Zoey's admission on Monday.Preparation that entails a physical as well as an emotional component.This extra week home has been amazing and makes me all the more ready to go but at the same time,dreading it.Double edge sword.We spoke to her oncologist yesterday and his feeling was to wait until Monday for a lab draw.We had vacillated between today and Monday for two reasons.One,because of all the junk floating around the house and the chance of her coming down with something,coupled by the fact that she takes Bactrim on the weekends.Why the Bactrim comes into play is because it came to our attention that it can sometimes lower the ANC a few days after taking it.Zoey only takes Bactrim on the weekends as a prophylactic for a certain strain of pneumonia.She will continue to take it for her entire chemo course as well as for a short time after.The draw on Monday could potentially be effected by her taking it,so her oncologist said to forgo the Bactrim for this weekend to alleviate a possible discrepancy in numbers.So unless she spikes a fever .... did a just say the "f" word?,we should be a go for round 4 on Monday.News came a little bit ago and we have to arrive at 5:30 am.Seriously.If they think I am going to get there on the dot, only to wait for AT LEAST 3 hours before her procedure,not going to happen.I am going to push that until at least 6am.I know,oh so much better but at least to me, it sounds better without a 5 at the beginning!I think I will pack for the month stay this time.Might as well get it out of the way.As for the boys,their schedule is pretty much set.I have run into a problem with Joe's care on Tuesday mornings but hopefully I can get that in place within the next couple of days.Other than that I think we are set.Zoey's birthday is Monday and seeing CHLA is not the best party venue,we are going to have a little gathering here on Sunday.Nothing big.Certainly not anything like the big shin dig we had last year.Last year we had her Baptized on her birthday and had a party that day as well.That day was so bitter sweet for me.It was the culmination of a very difficult year,with many medical issues resolved and won but somehow, to our great dismay we found her immersed in the unimaginable early stage and battle of Infantile Spasms.Her birthday celebration that day found not only Zoey in a seizure fog and medication haze but me in a fog of my very own.If you look back to pictures of that day you could see it,in both of our eyes.I went through the motions of that day.Not mentally present at all.Caught up in the could have beens and the what if's.I did not heed the advice of my friend who said:Embrace the day.It won't come again.Nor did I listen to her lesson learned in her own journey with her magical son,her words:"If I knew then what I knew now,I wouldn't have shed a tear."I didn't listen.That day I cannot get back.I do not intend to make the same mistake twice.I will embrace this day.I will rejoice in the moment.I will not look at the day from the perspective of how could we be battling yet another seemingly insurmountable diagnosis,I will instead say,look how far she has come.Look how much we have all grown in our faith and strength as a family.If you were to look back into the archives of our Infantile Spasms days you will see the fear and the bitterness.You will see a mother angry for her child and angry for her family.I am not that same person.And although I may, to some, be living their worst nightmare,a child with cancer,I will not let that define her or our lives.We are so much more than cancer and diagnosis.Zoey is so much more than Down syndrome,stroke,seizures and leukemia.She is a wonder.She is a miracle.She is our two year old hero.Come Sunday, with true peace in our hearts, we will thank God for leading us to these moments.And when Monday arrives,at 11:11,I will again thank God for the gift of Zoey.Even though our day will be spent in the hospital,I will be filled with gratitude of the gift of another year with my daughter.I have no idea what the future holds for Zoey or any other of my children.Or Mark and I for that matter.What I do know is that we will face what ever comes our way together.Armed with our faith in God and in each other and most especially our faith in one small child that has taught us more in the first two years of her life then we could have ever,ever imagined.The next month is packed full of birthday celebrations.Zoey's Monday,Caitlin will be 20 on the 7th,Jake will be 8 on the 14th and Jess will turn 22 on April the 4th.Busy,busy, busy.Throw in a round of chemo and life will certainly be busy.Fun,well,minus the chemo,but busy.Keep those prayers and good vibes coming,we are in the home stretch,I can feel it.The video: When most are feeling the pangs of a child in the midst of their terrible two's,you know,the constant chasing after because they are into everything,we are THRILLED that Zoey has found something,anything to get into!Courtesy of Joe,a broken pane on our entertainment center has lent itself to Zoey doing a little container play.Although she doesn't head to the basket with the definitive knowledge that things or objects are in there,once she finds it,she hauls things out.Nothing like a few Wii remotes to keep a girl happy.We happen to think it's pretty cute.*Pause the blog music at the bottom if you want to hear the video.

Do you think I would be a bad mother if I stuck her in a gigantic plastic bubble?

This extra week home has shaped up to be fairly uneventful.Thankfully.However, with a family our size there is apt to be at least something that blips the radar.Take this morning for example.While I was in the doctors with Jake,because he still sounds as if he's coughing up a lung,Mark was down in the car with Joe and Zoey and because Joe is Joe,mischievous Joe decided to get out of the car,Mark ensues,Joe closes the door to the car and well,keys in the car and .... Zoey.Yep,locked in or out,which ever way you look at it,not good.The only reason Mark was with me was because I couldn't bring Zoey into an office full of lord knows what kind of germs.Thank goodness he was with me too because while I stood by the car singing,or at least attempting to sing nursery rhymes and the such to a very confused Zoey,Mark and the boys drove 20 minutes to retrieve the spare keys.The back vent windows were open so at least she could hear me.I am fairly certain I looked slightly insane to most who passed by me but interestingly enough, no one ask if there was something they could do.Struck me funny because you could clearly hear Zoey crying while I paced the parking lot.Well,after what seemed like forever,Mark arrived back,spare keys in hand.Crisis resolved and we continued on with our morning.Seems as though that same yucky virus thing Jake has hanging on, has found it's way to me though.Felt it coming Sunday and it has only gotten worse.All that germ warfare did not one bit of good for me.Ironic,don't you think?Good thing I am a suck it up kind of gal or this week would have been a disaster.It takes a lot to put me down and this doesn't come close.Don't get me wrong,my bed feels heavenly at the end of the day and I hate getting out of it in the morning however,since there is no maid,nanny or chauffeur,suck it up Heather, has to keep moving.I am far more concerned that Zoey will come down with this.We,rather she, cannot afford to,for so many reasons.One,her ability to kick it will be more difficult and two,a delay with round 4 is not a good thing.As it is round 4 began almost 6 weeks ago and they really want these kids to stay on schedule.Postponing it would potentially freak me out because all I would be thinking about would be the old nasty cells rearing their very ugly heads.Mark is making a call today to see if we can come in for labs tomorrow.If we could jump start the process by a day or two it sure would ease my paranoia.Paranoia is actually an understatement.I am often rendered feeling helpless with this child.So much that has gone on in her little life I have had little or no ability to control.From the mundane to the ginormous.No control.Daily I am taught this lesson of accepting my lack of control.Relinquishing control.The story of my life.As for today,the little love seems to be feeling alright.Yesterday she wasn't quite her carefree self and today she went down easily for an early nap.Let's pray it is a coincidence and that it's not the prelude to something bigger.I still like the idea of the bubble.A big plastic one.Just for awhile.Just until we get past this latest battle.Not going to happen though so I suppose I should just heed my own advice and live in the moment.Some days, ones like today, it is so much easier said than done.Pray she misses this thing,would you,please?

Long over due ....

The main reason I rarely post videos is because I have absolutely no idea how to load them and then upload them. Clueless. Absolutely clueless. As I have said countless times before, computers and me, not friends. Therefore, I have to wait for Mark. And after he has had an extremely long, long day of editing actual TV shows,the last thing I feel like doing, is asking the poor guy to put together a 4 minute video or in this particular case: 3 minutes and 57 seconds. But being the great guy he is, tonight he obliged. What I love about this particular clip is that it truly captures Zoey's innocent little spirit. This is Zoey, all the time. Except day two of chemo and trust me, you don't want to see that on video. So... here is the little love. Enjoy our tiny warrior. Take in a few minutes of what we are blessed to experience all day long. Every single day. Mark and I marveled and giggled and even cried a bit as we watched this. We look at this child and all that she has been through and all that she continues to go through and by the look of things here, you would never know it. We did have the momentary and it was only momentary, awww, as we watched her, with her little stroke arm, still doing her thing, oblivious to it all. That's my girl. Rolls with the punches and keeps moving forward. Amazing. Miraculous and simply amazing. Don't forget to pause our music at the bottom first.

Frustrating ...

I use that word ...a lot.Certainly makes the top 10 list of the most frequently used words in my vocabulary.After a very early rise this morning it looks like that old saying, mom knows best,holds true.ANC missed by a mile.520.Well,I take that back,if you consider I was under the impression she needed to be at 750,then not too far off.But it came to my attention this morning that the deeper you go into rounds,they rise the ANC parameter.Now it looks as if she needs to be at 1000.I really wish someone had filled me in on that little tid bit.I would NEVER have gone today for counts.I would have pushed it at least until Friday.The mental preparation as you begin rounds is something I would find difficult to explain to anyone other than someone who has gone through it.So today's frustration is based on A:I mentally was semi-prepared and B: physically pretty much all there.However,we need to circle back to the most important thing and that is,when Zoey's body is ready,we start.Everything else is still looking great.White is up to 2.67,platelets are 326,000 and hemoglobin is 14.2.That number is actually on the high of normal and I am wondering why.Anytime numbers are out of normal,we as parents of these kids just jump to :what is wrong?When 9 time out of 10 it is nothing.I call it "lab-anxiety".And I hate it.It is all about numbers in this battle.So we are home.Probably until Monday once again.That would be Monday March 2nd.That would be Monday March 2nd,Zoey's 2nd Birthday.Happy Birthday Zoey,welcome to Round 4.Seriously though,a number of people have commented on how it is sad she will be in the hospital for her birthday but we look at it the same way we did Christmas.We are doing this so Zoey will have a lifetime of birthdays.I suppose that's all.Please keep Zoey in your prayers this week that she will stay healthy and nothing will prohibit things from moving forward on Monday.Because there is also the parameter on weeks between rounds and Monday will be 6 weeks since round 3 began.I really want to get this show on the road.Frustrated and Anxious.Anxious:another top 10 contender.Thank you for all the well wishes and comments.We will take another rain check on those until next week if we could.Zoey has weathered the morning like the trooper she is and is at this moment,happy as a clam ,rolling around and doing her carefree thing.I think I will tubby her and try to put her down for a nap.Wish I could join her but ... life beckons.

And tomorrow comes .....

Tomorrow marks two weeks since we've been home.Funny,the first week is such a time of adjustment after being inpatient for so long.By week two we have finally gotten back into a groove and by the end of that week we are saying .... no ...don't send us back!But back we must go.Three rounds down,two more to go.We check in at 6:30 am and at that time Zoey's port will be accessed and labs will be drawn.If her ANC comes back 750 or above she will have a lumbar puncture at 9am ,with a dose of chemo and then she will be admitted.I decided rather than pack for the entire month I will pack her bedding and 2 days worth of things and once we know for certain she will be inpatient,I will follow with the rest.I have been caught before and packed EVERYTHING,only to head home within hours.Hard to say which way things will go tomorrow.I think if I were to make a guess,I don't think her ANC is high enough.Who knows.It becomes a crap shoot,honestly.Jessica and Matt are here this weekend so it's been almost a full house.Tonight we will watch the Academy Awards Show.Ever since the girls were young we have made a little party of it.Snacks and yummy food.Ironic thing about it is .... it's been over two years since I've even been to the movies.People Magazine has kept me in the loop though.So tonight we will enjoy our time together.I will start getting things in order for the boys.Get the house in order.Make sure laundry is done and groceries are bought.As each new round begins I have a little more sense of peace about me.We have come to have routine as we venture into each new month.Doesn't mean I like it any better.I just have accepted that we do what needs to be done,for Zoey.Tomorrow will come.I will awake with that familiar pit in my stomach.I will walk around my bedroom taking deep sighs.I will put on my "Leukemia Sucks"t-shirt.I have worn it on day one of all the last rounds.Speaks volumes.Day two will find me wearing a peace,or hope shirt.Shows my progress as we have ventured deeper into this unknown world of cancer.And from there ... I pray.Pray that Zoey will be looked after and guided as the onslaught of her nasty cocktail begins for 96 hours straight.Pray that God gives her body the strength to withstand it's power.Pray that His grace covers us as we watch her endure, day after day the effects of her potential miracle.I have no doubt in Zoey's ability to take what is given and I continue to marvel at the courage with which she does it.There is always a measure of fear.Fear of the unknown.In those moments of fear I will turn to the only thing I can.The only thing I know and that is my faith.Please pray for the little love.We have come to rely on that as well.That's all for now.I will keep you posted on how the day plays out.The only thing left now is the ever present question ..... is this child EVER going to lose her hair!!!I'll keep you posted on that as well.

*Picture explanation :My exhausted husband asleep,probably mid-sentence reading to Jake last night.It was late.Joe had long since collapsed but no matter how late it is,it has always been our routine with the kids,to read.8 books might get pared down to 3 but we read.At 10:30 last night,this what I found when I checked in on them as they were reading up in Caitlin's and Jessica's room.Had to capture it on film.
The other pictures are of the beautiful tote that arrived in the mail for us yesterday.My lousy picture taking doesn't do it nearly the justice it deserves.The gift is from some very old and dear friends,Robyn and Bo Root and their daughter Kim.Kim actually made the tote,it's reversible too,and well,it made me cry.Along with a note that went along with it.One part of the note,that I hope Robyn doesn't mind me sharing was:"The picture on the pocket is one that I have hanging on my wall at work.People ask me if she is my granddaughter and I tell them no,she is my inspiration."We love you Root family and we cannot wait for the day that you all can meet Zoey in the flesh.Thank you,thank you,thank you.It will be just perfect to carry back and forth to the hospital.

Another blog blessing revisited ...."We cannot do great things on this earth. We can only do small things with great love."

If you have followed me for very long you might remember my super darling little friend Gwendolyn.I have fallen so in love with this child.This family.They live a hop ,skip and a jump from us and I hope one day, when Zoey is better,we can finally meet and enjoy a beautiful Santa Barbara day together.Until then, I would love if you headed over to meet this amazing family and more importantly click over and sign a very simple petition if you haven't already done so,the last time I made an appeal.Learn about this devastating disease called SMA.Learn how your simple action can make a monumental difference.Don't do this for me.Do this for Gwendolyn and all the other innocent children that so deserve the chance for a future.

The Beauty of Blogging .....

I would be hard pressed to accurately express to you this crazy world that I delved into almost a year ago.My journey into blogging began mostly as an outlet.Zoey was newly diagnosed with Infantile Spasms and I had stumbled upon a godsend of a site, while surfing the net for information.While all my search engines led me to the dark side of IS,this site radiated light and hope to Zoey's latest medical crisis.I emailed the mom and she asked if I had a blog.A blog?Seriously,me,the consummate computer illiterate.So I googled:"setting up a blog" and .... here I am.Who would have ever dreamed this outlet would have morphed into the what it is today?And what is "iT", exactly?For me,blogging has been an absolute blessing.Hands down.I found immediate support and discovered almost instantaneously, that I actually wasn't this lone entity,struggling to find her way with a medically fragile child.I found countless others who were also searching for connection and at the same time were willing to step outside their very own overwhelming life circumstances,and lend a hand.Or an ear.Or words of encouragement.Or even and most especially prayers.As time passed I became hooked,vested and fell totally in love with some of these families.Their stories.Today,some of these cyber-friendships have withstood the test of time.They have become more than the random comment here or there.They have become a thread of commonality that spans time and distance and defies logic.How is that feelings can run so intense and deep for people who you have never even been in the physical presence of and quite possibly never will?Dumbfounding.But that is the way it goes down in blogosphere.Ask anyone who dwells here.Might be an interesting psycho-analytical project for someone.Today,my purpose in sharing a bit about my experience in internet journaling,lies in the story of a boy.A tiny and mighty fighter named Gavin.Months and months ago I received a comment from someone who had found me through another site.Again,just the way it happens here.One click leads you to another ,to another and so on.Sometimes you have no idea how you got from point A to point Z.But there you are and sometimes you are just drawn to stay and read and before you know it you are hooked and something,a feeling,a sign,a certain something ... keeps you coming back.Well,I clicked on commenter profile,which in turn led me to this blog and the first thing that popped up was the header.A vibrant blue wall and sitting in front of that wall was absolutely the most darling boy I had ever seen.A darling face with dimples to match.He had on a little rash guard and swim trunks and well,he was so darn cute.As you studied the picture more closely you were then drawn to the tubes.And the lines.And the bags.From just a glimpse of this photo you could quickly tell this was no ordinary story.No ordinary boy.I read on.I read his story.Their story.From the beginning.I have never stopped reading.His story,this boy, now lives in my heart.This week Gavin's story began a new chapter.One that is filled with a great deal of uncertainty but one that holds great hope for his future.I am sharing Gavin and his family with you in hopes that you might add them to your prayers,if you are the praying type.Or perhaps you will just pause for a moment and feel gratitude for the life you have and for the health of your children.I share so you might see a boy that should not and is not defined solely on a diagnosis or struggle but is instead a boy that embodies courage and resiliency and beauty.Gavin represents the beauty of blogging to me.As do the other families and their amazing children that inspire me and force me to stand outside my personal space and give my time and energy to something other than my very own corner of this world.I am the all the better because of it.Because of them.Blogging has gifted me in ways that I could never,ever have anticipated.Inexplicable,life changing ways.I thank those of you who have faithfully stayed with us.Followed our journey.Zoey's story. And those who have shared it with others.Especially now,because now, more than ever, I find that the support lends such strength to our journey, knowing that Zoey has touched so many.But today this is not about Zoey.Today I share because of the love I have for this little man Gavin.If you get a minute check in on his family.Lend whatever it is you have to give.Maybe just a silent prayer or good vibe.As for us.We are doing fine.Jake has gotten past the worst of his deal.No one else,knock on wood,has come down with it.Zoey is doing her thing.We are glad to be basking in the comforts of home.Although,home means home.Lock down.We venture nowhere.Which makes for a slightly stir crazy mom.Weekend is almost here which means I may make like Houdini and escape for a bit.Nothing exciting.Starbucks and maybe a pedicure.We'll see.Thanks to all of you that have hung in there and weathered the long rantings and ramblings of this blog.It has been a life line and for those of you who have thrown me one ... I thank you.With all my heart.

* Picture's are from my Dad's 77th birthday celebration this evening.

The gift of another week ......

This morning,the little miss and I battled the nasty freeways and headed to CHLA for a clinic visit.The weather here in Southern California has been down right strange.In the last 24 hours we have seen:torrential down pours,high winds,clearing skies with a rainbow to follow,then an unexpected and rarely seen, hail storm.At the moment no rain,a sun peeking ever so slightly from behind a cloud covering but reports of more rain to follow.Unpredictable.Kinda like this journey we are currently on.This morning we headed in for counts.The usual process.Arrive an hour early, only to wait around for a couple of ungodly hours.See the doctor for like 3 minutes and before you know it the day is more than half over.Nothing too earth shattering in Zoey's blood counts.Just what I expected.Her ANC and white are too low to begin Round 4.Everything else is stellar.Red count is 4.33.Hemoglobin is 13.2.Doubt if mine is even that high.And her platelets are 282,000.Down side:white 1.73 and ANC 190.We have to be at an ANC of at least 750 to begin the next round.I was slightly disappointed.I knew we were going to be short of the 750 because history has told us that Zoey needs at least 2 weeks before her marrow has completely recovered to go forward to the next round.But we are already at week one and we aren't even a quarter of the way there.The thing is though,with each round, Zoey's marrow gets nailed so,so hard that it takes her body just that much longer to recover as time goes on.So we wait.At home.Which really,truly is a gift.As much as I want to get these last two rounds done and over with so we can get on to living,I simultaneously cherish the time at home.We head back next Monday and if her numbers are up, we will be readmitted and Round 4 will begin.Last round it was 3 weeks before we started up again and I won't be surprised if this time is the same.They tend to send Zoey home,not so much by what what her ANC is but by the increase in monocytes,which are immunity helpers.So the lower the ANC when we go home the longer it takes it to climb.Would much rather be waiting at home for numbers to climb rather than in the hospital.As long as she remains fever free ... knock on wood .... we stay home.We will just see what next week holds.Yesterday was baby Luke's memorial service.The day held that stark contradiction of beauty intertwined with such immense sadness.How privileged I feel to have been part of this little mans all too short journey.How very in awe I was as I sat and listened to John and Laura as they spoke of the void that exists in their life without Luke but what extreme gratitude that dwells along side their grief, for having had this amazing boy for only a mere 16 months.I had a measure of anger as well, as I once again feel that a family has been unfairly jipped out of a lifetime of memories with their precious child.The anger component is something I think I will struggle with the most as I venture through this latest battle in Zoey's life.I stood, for a short time yesterday,shoulder to shoulder with some other parents,doing just as I am,living each day, trying with all their might to save their children's life at whatever the price, at whatever the cost ... because in the end ... we just want them here with us .... for a lifetime.One of the most touching moments of the service was when Luke's cousin,she was all of about maybe 10 and I believe it was her father,sang an amazing song."Godspeed" by the Dixie Chicks.Her dad played the guitar and she,like an angel, just stood there and sang.I felt so privileged to have been there yesterday.Privileged and better for having known this small soul.I leave you with the lyrics to the song they sang for baby Luke.Peace sweet child.And peace and strength to John,Laura and Gracie as they make their way through the days ahead.Our love goes with you.Always.

Dragon tales and the "water is wide"
Pirate's sail and lost boys fly
Fish bite moonbeams every night
And I love you

Godspeed, little man
Sweet dreams, little man
Oh my love will fly to you each night on angels wings
Godspeed
Sweet dreams

The rocket racer's all tuckered out
Superman's in pajamas on the couch
Goodnight moon, will find the mouse
And I love you

Godspeed, little man
Sweet dreams, little man
Oh my love will fly to you each night on angels wings
Godspeed
Sweet dreams

God bless mommy and match box cars
God bless dad and thanks for the stars
God hears "Amen," wherever we are
And I love you

Godspeed, little man
Sweet dreams, little man
Oh my love will fly to you each night on angels wings
Godspeed
Godspeed
Godspeed
Sweet dreams

'What the caterpillar perceives is the end, to the butterfly is just the beginning'

Tomorrow I will be going to sweet baby Luke's memorial service.My heart is heavy and I am void of all words that could possibly come close to making sense of the the loss of one so young.For a mere 16 months precious Luke graced this earth.His presence here shone a beautiful radiant light into the lives of so many.The pain of his absence here will be felt for always.Tomorrow I pray that God,with his unwavering promise never to abandon us,will strengthen and carry Luke's family through what is sure to be an extremely heart wrenching and difficult day.

Peace little butterfly .... "May the choirs of angels come to greet you.
May they speed you to paradise.
May the Lord enfold you, in His mercy.
May you find eternal life."

Deja vu

I am a self-admitted,over the top,out of control,cannot release it to a higher power ... germaphobic.Have been,most of my adult life.I am fairly certain that germs will be a main bullet point in my children's therapy when they are older.That is why I add a few extra bucks to their therapy jars from time to time.My children will always know Chuck E Cheese and the play areas in malls as being synonymous with the word "germ-fest'.Or in Joe's case 'germ-FESTIVALS".An outing with me sometimes goes something like this :Don't touch the cart.Don't touch the railings.Don't touch the elevator buttons.Use your sleeve for the doors.And :Here's some hand sanitizer.And ... here's some hand sanitizer. And ... here's some MORE hand sanitizer."Yep,I'm a real treat to go out with in public.Just tonight I was in near panic when I reached into my purse after using the pen at the store checkout and couldn't find my trustworthy germ fighter.Okay,panicked it a bit much but you get the idea.I have issues and they have only grown exponentially since Zoey has been born.When she finally came home after 2 1/2 months in the NICU,keeping her healthy was a matter of life and death.Literally.Zoey was born basically into congestive heart failure and balancing that and her pulmonary hypertension proved to be no small feat.As Zoey lay on her back,g-tube feed 20 hours a day,unable to be left alone for any length of time because she gagged and wretched 24 hours a day,germs were the number one arch enemy.We didn't mess around.The words,courtesy of my niece were :"No touchie".We bought 3M Avagard by the case full.We still do.The last several days around here have been a bit reminiscent of those early pre-heart surgery days.With leukemia and low ANC being part of the vernacular around here now,things have kicked into high gear.I have been known to follow those with sniffles and coughs around the house and ever so inconspicuously,wipe where ever their little hands may have wandered.Chances are I am not fooling anyone.Well,it appears as though my neurotic ways have still allowed the germs to penetrate the Needham fortress.Jake started with a cough.A nasty one, the other day.I took him to the doctors today.Cough,fever and all.As I walked through the door there was a kid with a bowl ... puking.Nice.I felt the urge to run but choosing to be a good mother ... we stayed.The verdict from the doctor ...a virus.Just as I suspected.Nothing we can do about a virus except let it take it's course.Our pediatrician has seen a decrease in RSV but instead two new strains of Influenza have shown up.We all received flu shots.Here's hoping we miss the worst of it.I inquired about stomach virus's.The worst in my opinion.Much to my dismay his reply was :"Oh,those are year round."Great.Rumor has it that Jakes school has kids dropping like flies from it.Thank goodness for having him home the last two days and for the long weekend.I mean seriously.I had just felt like winter was winding down and maybe we had missed the worse of it.But as my sister ever so gently reminded me today,our family seems to get hit in February and March.Double great.In the end,all of us will weather what ever comes our way but Miss Zoey is another story.These little bugs can mean big trouble.Could we just pray she dodges this stuff?When I am able to bring myself back to reality,I realize that in the end,the hospital probably poses more risk to her than home.I can't mandate or control the people that come in contact with her,and where they have been or how healthy they really are but at home I can.So, I will just do the best I can and know that sometimes no matter what I do,things will still slip through.It just scares me.A lot.But tonight all is well,except of course my little man Jake.Hope he gets to feeling better soon and I soooo hope the rest of us will miss it.But honestly, what are the chances of that?A few picture of the littlest love.Taylor is very into braiding her hair and Zoey sits so sweetly and patiently while she does it too.I want to also bring your attention to 3 other darling girls that we have "met" via this blogging world.They all are battling leukemia.ALL to be specific.Won't you join me in keeping them in your prayers and sending their families peace and strength as they journey this very long road.

"Do all the good you can, by all the means you can, in all the ways you can, in all the places you can, at all the times you can, to all the people you can, as long as ever you can."
~John Wesley


Over the last few weeks,each time I was home from the hospital,I would go to the mailbox and waiting for us, would be yet another package.The generosity of people,some,complete strangers,have touched us beyond words, over the course of the last 4 months.Actually the last almost two years.I could never and will never be able to thank each and every single, solitary person.I am sure to miss something or someone.But please know this,we are so grateful for the love that has been bestowed upon us and our precious Zoey.I apologize if I have not adequately expressed that or have forgotten anyone.Below are a few pictures of a few of the things we have received recently.First,came this beautiful blanket from Lacey and Jax.The pictures do not do it justice.Lacey has selflessly decided to make blankets for little ones who are in the hospital or spend a great deal of time there.I will post her blanket button tonight and I know she would love to hear from anyone who knows of a little one who could use one.Inside the blanket is a picture of Jaxson and Zoey was so darling because she really spent some time looking at it and even tried to kiss him.So thank you Lacey and Jax.Another picture is a darling outfit from Gavin and Alicia.The shirt says "gentle as a lamb" and we think it suits Zoey perfectly.Alicia also sent a cute little snuggle blanket and a devotional book for me.I am amazed by the thoughtfulness of so many of you who have lives so absolutely crazy and you have still found time to think of us.Next came this stylish and oh so cute poncho from our first "boyfriend" Sam and his mom Rae.Rae started making these ponchos for little ones who also are in the hospital and have lines and tubes and extra "things" all the time and together they prevent them from keeping adequately covered up.Sorry Rae that I could not get a better picture.Zoey was not in the posing mood that day.I will get a better one next round,promise.Click over to Rae and check out these sweet things.Lastly, a huge thank you to Presley and her extended family for the stash of gift cards.Totally over done and unnecessary but our gas tanks and my Starbucks habit thank you immensely.I guess that's all for now.Just wanted to let you all know how much we appreciate you all in our lives and for sticking with us on this long road we walk.

Happiest Place on Earth .....

I think it is the opinion of Zoey and I that home best suits the definition of the happiest place on earth but for the rest of the crew,Disneyland fit the bill.This past Sunday Mark and the kids,including boyfriends,except Danny who had to work,headed to Anaheim to rub elbows with Mickey and company.I suppose I would have to consider this the boys first trip.At least that they would remember.They were just little the last time we were there.Small fortune for a family our size.However in this case,the trip cost was off set courtesy of Miss Zoey.Tri-Counties Regional Center,where Zoey receives early intervention,has an incredible opportunity once a year to purchase up to 6 tickets at an extremely reduced rate.Even though Zoey was a no go for this year,hardly seems fair, we thought it was perfect timing for everyone else to spend a little much needed fun family time together.And fun it was.Besides some ominous looking clouds,which did yield a few showers,the day was a blast.Or so I heard.One day,Zoey will go and partake in the Magic Kingdom but this time it was not in the cards.We just need to get past this leukemia side track thing and then we can have a lifetime of Disneyland trips.A good time was had by all.Matt,Jessica's boyfriend,hails from Chicago, so he had never been and since Volleyball was not on the schedule we were glad he could tag along.We are so enjoying our time at home.Zoey adapts so well to changes in her life and in a heartbeat she is back to sleeping through the night and going down for naps like a dream.We are cherishing our week home.Time will pass too quickly.We are soaking in each other,the warmth of our own beds, not to mention a nice long hot shower.Boy do I miss that when I am at hotel CHLA.Lots to catch up on here.Tons of thankyou's to get to people that have once again out stretched their hands so graciously to our family as we continue on this journey.I have some blog "housework" to get to as well.Buttons to get posted of other amazing little girls fighting Zoey's same battle.As well as some pictures to post of some beautiful gifts we received this past week.My mailbox overflowith!!Hopefully I will get to that tomorrow.Again our hearts are full of gratitude and thanks to all of you who continue to stay with us and pray for us.Each and everyday we are humbled by the comments,emails and phone calls offering words of encouragement and support.We are overwhelmed by the generosity of the human spirit and we are continually reminded to give thanks for our many blessings found daily on this road we are on.


"Strange is our situation here upon earth. Each of us comes for a short visit, not knowing why, yet sometimes seeming to a divine purpose. From the standpoint of daily life, however, there is one thing we do know: That we are here for the sake of others...for the countless unknown souls with whose fate we are connected by a bond of sympathy. Many times a day, I realize how much my outer and inner life is built upon the labors of people, both living and dead, and how earnestly I must exert myself in order to give in return as much as I have received."
Albert Einstein

Could you hear the tires screeching?

That would have been Zoey and I as we left, or rather sped away from, the confines of Children's Hospital Los Angeles.In round breaking record time I might add.21 days.Rounds 1 and 2 were exactly 24 days.This time Zoey exceeded every one's expectations and I must say ... did some serious cancer butt kicking.Much to the continued amazement of the doctors and nurses.They seriously stand in awe of this child.Zoey does this "thing" thrust upon her, with such ease, that it sometimes scares me a bit.I have to remind myself to not get too overly confident and cocky and instead take the days and months and rounds for what they were, absolute blessings.I had a mini breakdown of sorts on the way home.I was listening to music,"Miracle of the Moment",to be exact and the tears just came.As I drove down the 101,I realized that I was truly living in the miracle of that very moment.Driving home with my miraculous daughter.Driving with my miraculous daughter,who,to outside eyes, bares not a single outward sign or symptom of the heinous disease or horrendous treatment she has had to endure.With each passing day I become more acutely aware that Zoey is nothing short of a miracle.I have had the opportunity over the last few days to retell Zoey's entire history and story and for the first time,in a very long time,I walked away,letting the gravity of all that I had just spoken,truly sink in.Zoey is my hero.Zoey,a few weeks short of her 2nd birthday,is my tiny but extremely mighty hero.I called Mark on the way home and we both said,through tears, how proud of Zoey we are.How proud we are to be the parents of this breathtaking,wondrous little soul.Tonight,our miracle sleeps once again in her own little bed.Uninterrupted for vitals or blood draws.She was a bit off when we arrived home.She really spent a great deal of time looking around and most likely,in her little mind,was trying to figure out how the heck she got from there to here.She had tons of smiles for her brothers and Taylor.She even showed off her new pulling to a sit position trick.A few times.The only thing missing to the moment was Jess and Caitlin.And Mark of course.I cannot wait until we can all be together again.Might be a while though.For now,tonight,in this moment,I am rejoicing and thanking God for seeing Zoey through this latest round.Thanking God for bestowing His grace upon us to walk our days with the confidence and faith that together we will pass through this difficult time.Thanking God,every single,solitary day for the miracle of Zoey.

A few pictures first,followed by a post ....

An amazing first ...

When Zoey goes down for a nap during the day, I create a cocoon type thing for her to try and shield her from the very busy and very bright lights of the hospital.She never naps for very long but I find if I shield her a bit from the goings on around her,I can stretch her sleep to about an hour.Yeah,whoo hoo,an hour.Anyway,today Miss Zoey was all cocooned up and she had been asleep for about the max of an hour,when I lifted a corner of her make shift tent to check on her and this is what I found.To most .... not a big deal,a child sitting up in her bed.But to us,those who know Zoey and know her journey, would absolutely realize that Zoey just began sitting independently when placed in a sitting position,during her first round of chemo and this picture would then mean .... that Zoey took herself from sleeping on her back and all by her lonesome ... pulled to sitting!Huge news on the developmental front.And she does it with one,only one, of her little arms.Zoey,you will remember,suffered a stroke inutero and although movement of her left arm and leg is equal to that of her right,purposeful movement is not.So Miss Zoey has learned a new trick.Since accomplishing this new feat, I watch in awe as she crunches her tummy and with willful determination push,push,pushes her arm ever forward and sits.Quite proudly at that.The one picture captures the love she has for the dad of our darling roommate Jayden.I was able to share this milestone with Antonio,Jadens dad and he rejoiced along with me.I was so glad to have someone to share in my excitement.Zoey so loves our new roommate and her family,as witnessed by the darling smile she flashed when spotted sporting her new trick.And we love them.They are the neatest family and it has been just a blessing to share the last almost three weeks,along side them all.So that is the Zoey news of the day.We are so proud of her.Such courage in such a tiny soul.As for her numbers .... playing tricks on us.Nothing bad just her ANC fluctuating.But her platelets are up to 74,000 and a few of her other numbers are on the up swing as well.So we are going in the right direction and with any luck,home will be on the horizon by the end of next week.Aren't these two faces beautiful?.They are two of our 4th floor loves.Roommate Jayden is on the left and the other is a most incredible young thing by the name of Ricca.I love this child.Full of wit and wisdom far beyond her almost 10 years.In fact her birthday is on Zoey's birthday,March the 2nd.The grace by which these two little girls go about their days would amaze you all.They bring light and laughter to my day.They bring such pure joy into my days as I watch them soak in and soak up their surrounding, when everyone knows they would much rather be in a far different place.These two girls represent what it is all about on 4E and W.Strength amidst adversity and the gentle nudge to live in our moments.I just so wish that the reminder didn't come in the form of such sweet innocence.Love to you all and keep those prayers coming.For all the little warriors.

"My grace is sufficient for you,for my power is made perfect in weakness."2 Corinthians 12:9

It has been a heck of a couple of weeks up here on 4East.A roller coater of emotions.Emotions based sometimes in our own fears but most definitely more so for other families trying so desperately to navigate through this new road they have found themselves traveling.Heartbreaking.I need to take a moment and mention the selfless nurses and PCSA's that work our floor.They gracefully and professionally and most lovingly give to us daily.They flip,how they do it I have no idea,from one extreme situation to another.They compartmentalize their emotions,at least in front of us and balance clinical and humanness seemingly effortlessly.I could never repay them for the selflessness by which they devote themselves to our children and I could never thank them for loving the hardest floor in the hospital so much so that most would say they would not choose to be any where else but on our floor.So any of you darling nurses reading this .... thank you on behalf of Miss Zoey Grace.As for Zoey ... doing her thing.The last few days you could really see the need for fresh blood.Her hemoglobin was down to 7.2 today(normal 11 and above) and that bought us a 4 hour blood transfusion.What a difference some fresh red cells can make.By the time I left this evening she had little rosy cheeks once again.No need for platelets this round.She did drop to under 5 thousand though.Normal is 150,000 to I think around 400,000.So they were scary low.But since she had no active bleeding,nose,ears,gums,we held off.Today her platelets jumped to 27,000 so I think we made the right decision holding off on the platelets.Too many platelet transfusions and the kids can get to a point that they basically become immune to their purpose and trust me,with,God willing, only 2 round left to go,we don't want her to become refractory,or stubbornly resisting their benefit.Zoey continues to amaze us.Truly amaze us.Her strength and courage and resiliency shine even brighter with each passing day and each passing round.She too, seemingly effortlessly, goes about her day.She takes her lead from those amazing nurses I suppose ... or maybe it's the other way around.The rest of us are holding up.Minus a breakdown from Jake tonight.Yes,Jake.My even keel,never sweats it,Jessica clone.My never throws a fight boy,threw a doozy.All over the lunches Mark and I make him.It all started when he figured out he missed hot pizza lunch today.Well it was all over then.He said that he eats the most boring lunches while everyone else gets "good stuff."Good stuff definition:fruit roll-ups,gushers and sour patch kids.Aren't I just the crappiest mom ever?He went on and on and I so wish I had a tape recorder.This all began right at bedtime.At one point I was reading a book called "Muncha,Muncha,Muncha".WELL,you should have heard him "Did you need to read that book ... It reminds me of food.And it reminds me that I will never,for my whole life,ever have a good lunch.Ever."All said with a dramatic voice of indignation and ... a lot tears.I tried not to laugh but ... Joe and I couldn't help it.Jake would find no sympathy in Taylor.I think she said something along the lines of :It was exactly the same for me growing up so oh well."Care to chime in here Jess and Caitlin?Well anyway,for Jake to have a meltdown means he's growing weary of Round 3 just like the rest of us.Day 17 tomorrow.Maybe by the end of next week we can find our way home.Until then we just pray that Zoey continues on this current path.We pray she can stay fever free and that her little body kicks into recovery sooner than later.And we pray for the 4th floor warriors and this week ... never more fitting.The laundry buzzer is sounding and I still have a load or two left.I leave you with a few pictures of the last couple of days.Today the Dodger's came calling.Highlight of a lot of the kids day and dare I say, parents as well.I wish I had my camera going when they were with her.Their publicists got incredible pictures as Zoey was definitely her charming self.They signed a hat for her and left a goodie bag that I suspect the boys will have to fight over.Another highlight of Zoey's weeks have been when the music people come by.They come mainly with guitars and Zoey just loves them.Absolutely loves them.She bounces and moves and smiles and they end up lingering a little longer with her.We also have volunteer readers that come throughout the week and Zoey adores them as well.Books and music.Two of her most favorite things.We are forging ahead.Hopeful and always prayerful that Zoey stays the course.Our faith seldom ever wavers in Zoey's ability to beat this thing.We remain confident that she will overcome this just as she has done every other obstacle placed before her.However,in our moments when we have grown weary and doubt and fear creep in, we ask God to continue to bring us His ever present grace when we most need it.Which,in the case of the last week means: He's been working overtime.

"Perhaps they are not stars,but openings in heaven where the love of our lost ones pours through and shines down and let's us know they are happy."~Eskimo Proverb

Today the sad news came that sweet and precious baby Luke,our very first little friend we met here on our latest journey at CHLA,has passed away.Our heart aches for the entire Piersol family and all who loved Luke and we ask God to cover them all with His amazing grace and carry them as they begin this new chapter in life without Luke.Rest well my tiny but mighty fighter.You are so loved.