Day 21 ....

Today I was exhausted.Today I was going a bit stir crazy.Today ... I so wished we were home.I haven't really hit many times over the past 3 weeks when I have felt so incredibly confined by the walls of CHLA.Even Round 1 seemed to be easier to wade through than the last few days.I have manged to get through the days just knowing that there were no other options.We stay as long as we stay.But today .... I was done.Each time Zoey fell asleep,ever so briefly that it was,I would do laps around the floor.Circling the nurses stations and just dreading heading back into room 414 bed B.I went out,just around the corner,to grab a sandwich while Zoey was sleeping.The sun felt so great against my face and I realized in that moment how little time Zoey has spent outdoors over the last 2 months.How little time either of us has spent outdoors over the last 2 months.I literally broke out into a jog as I crossed the crosswalk and I had this overwhelming feeling to keep running.Not away from Zoey but to get out there and start running.I miss running.I feel so free while running and I have not been able to run for a very long time.It has been well before Zoey hit this latest blip in the radar.One day I hope to get back to it.I know I will.Just a matter of when.I had also hoped to be home this week with Zoey so that did not add to my mood of the day.Maybe by weeks end home will be on the horizon.We will have missed spending the week with Mark though and for that I am a little sad.What's keeping us inpatient?Well,numbers people,always numbers.ANC a whopping 10.Might as well be zero.White count is basically holding steady at 1.25 and red and hemoglobin are in a holding pattern as well.Platelets however are in recovery.We are up to 144,000,which is awesome and by Friday everything should be on it's way up.So we wait and I pace and we wait some more.Here are a few pictures from the last couple of days.Zoey is doing this tongue thing lately when I take her picture.Cracked me up each and every time.Well at the risk of sounding repetitive,I am so tired and cannot seem to put together 2 coherent sentences.Let alone keep my eyes open.So I call it a night.Tomorrow will be here before I know it.

"The few wonders of the world only exist while there are those with sight to see them"~ Charles de Lint

The Magic of Christmas

For a brief time on this Christmas day,we were all together.The eight of us.Something we have not been able to do for almost 3 weeks.Yes,come Monday,Round 2 will reach 21 days.And counting.Miss Zoey is taking her time with her numbers.Slow coming down and so hoping the upswing is quicker.But one thing is for certain ... Zoey is doing so unbelievably well.I hesitate in even uttering that but it is what it is and we are so proud of her.She continues to charm everyone around her and with each passing day I fall more in love with this child.If that's even possible.Her strength and unwavering determination continues to wow us all.Besides a few rough days at the beginning,she has had a relatively easy go of it.G-tube issues have been minimal.Side effects almost none existent.She has had a cold for the last two weeks but her lungs remain clear and it appears to be primarily upper respiratory.So we wait.Something we have gotten fairly proficient at.When we get sprung is any ones guess.Mark has all next week off and how great would that be if we found our way home for a few days then?There were a few moments on Christmas day that I felt little pangs of sadness but on the whole we made our way through the day knowing this year was done,as it needed to be done, to ensure we had a chance at a lifetime of Christmas's together.The 4th floor was actually an amazing place to be on Christmas Day.The entire floor bustled with holiday activity and scattered amongst the heavy hearts were faces that radiated joy and .... hope.I went to bed last night,curled up on my faithful bench and I thanked God for the gift of the day.My prayers were weighted down with the names,a list actually,of all the magical children who are in need of their miracle.Families that are in need of strength and renewed hope.Families like ours,doing the best they can to wade through the days,accept that which is not in our control and embrace the moments that are right in front of us.My list has gotten long.Really long.Too long.Yesterday was a reminder that illness does not stop for Christmas.In fact,it takes no notice of it at all and because of that I kept all these kids and and their families close to my heart yesterday.Be it Zoey's friends on this blog or our new friends made on this latest journey,each one of you,their parents and families have blessed me in ways you could never know.Another humble thank you to all those in our community and beyond that extended their hand to us during this holiday season and so selflessly gave a piece of your life to ours.Christmas Eve all the kids and I headed out front to toss Reindeer food out onto the lawn.As we opened the door we see a package that has been left for us.In this package was the most incredible array of things.Gift cards,movie tickets,toys for the boys and presents for the girls.We were so touched and we have no idea who dropped it to us.Once again strangers that have given of their self.Selflessly.So thank you ..... again.I hear my bed calling me.First, perhaps a bath.Oh, the little things we take for granted,that 2 months in the hospital will cause you to appreciate ever so much more.This entire journey had been an opportunity for us all to appreciate that which we so effortlessly took for granted before.A lesson to live and learn from the little things and more importantly,the little ones that have graced our lives.Now .... that's a Christmas gift.

And it came to pass in those days, that there went out a decree from Caesar Augustus that all the world should be taxed. 2 (And this taxing was first made when Cyrenius was governor of Syria.) 3 And all went to be taxed, every one into his own city. 4 And Joseph also went up from Galilee, out of the city of Nazareth, into Judaea, unto the city of David, which is called Bethlehem; (because he was of the house and lineage of David:) 5 To be taxed with Mary his espoused wife, being great with child. 6 And so it was, that, while they were there, the days were accomplished that she should be delivered. 7 And she brought forth her firstborn son, and wrapped him in swaddling clothes, and laid him in a manger; because there was no room for them in the inn.

8 And there were in the same country shepherds abiding in the field, keeping watch over their flock by night. 9 And, lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid. 10 And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people. 11 For unto you is born this day in the city of David a Saviour, which is Christ the Lord. 12 And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger. 13 And suddenly there was with the angel a multitude of the heavenly host praising God, and saying,

14 Glory to God in the highest, and on earth peace, good will toward men.

Caught Up in the Last Minute Craziness?

I am.Most are.Preparing for Christmas while trying take care of our families,our homes and some of us, our sick children.Overwhelmed by the daunting task of making Christmas "just perfect".Right before I was getting ready to head out,finish up shopping and get down to my baby girl,Jessica showed me this.I paused and decided it was just the thing to post today.For the last 2 years we have tried to cut back and we decided to start a bit of a tradition.We decided to begin with Jess,the oldest,and have her pick an organization or something near and dear to her,to donate to .She chose Invisible Children.Please check this site out.It is amazing.The next year was Caitlins turn.She picked the Down Home Ranch.Again,a great place to donate to and one I encourage you to learn more about.This year,before Christmas we tried to give a little early.We found a few families that were starting journey's to adopt through Reese's Rainbow and we were compelled to do what we could.Taylor is up this year.We have a few ideas but ultimately,her decision.I ordinarily wouldn't feel the need to share,not wanting to come off as "look at us" but I felt maybe,in the spirit of the season and in light of this video to share our new little Christmas tradition.I felt also the need to take a moment and pause and be reminded that the only thing that can be and is perfect about this season ,is one small child that came to us,over 2000 years ago to show us the way,the truth and the light. *Pause my blog music at the bottom if you want to hear the music that goes along with the video, although it is the written words in this case, that is most important.

It must be Friday ....

...... because I have found my way home for a day or maybe two.Mark is holding down the fort at Children's for the time being and I will try and wrap Christmas up ... literally.Shop and wrap.That's the plan.However,I also have come home,sick.Or at least starting to get sick.That nagging tickle and scratchy throat began earlier today and by tonight it has definitely escalated to a REALLY sore throat.I came home and swallowed a hand full of vitamin C and various other homeopathic remedies,all done in hope of averting a major something or another.For good measure I threw in some ammoxicillin I had lying around.Lord knows why because if it is viral than an antibiotic won't do a bit of good.But hey,desperate times call for desperate measures .... I CANNOT GET SICK!!! First because I have so much to do to pull off this holiday and more importantly I need to take care of Zoey.Facts of the matter are, that I was most likely contagious before my symptoms even occurred and that scares me.Although ,I must say,Zoey has actually had a cold of some kind since we became inpatient.Her cough is nasty but lungs are clear.We need it to stay that way. It just proves to me that no matter how careful and fanatical,as I am,still sometimes you cannot avoid germs finding their way to you and in you.Yuck,not to mention,just really bad timing all around.I hope to wake tomorrow,maybe no better but hopefully no worse.Zoey had a fairly good day.Numbers were,let me say,interesting.Hemoglobin was 7.4 so a transfusion was in order.Transfusions usually take 4 hours.We began at 2 and by 6,Zoey was my pink feisty little love once again.Platelets took a HUGE hit.They dropped from 55 thousand to 16 thousand ...yikes.No transfusion yet but my pale little girl looked like a bruised and spotted little girl by days end.Poor baby.If we get to 5 or have nose or gum bleeds then we go straight to transfusion.I know ...sounds lovely doesn't it?Now the interesting part.Her ANC went from 350 to 540.Uh,wrong direction Miss Zoey!!! So hopefully the next draw will be in decline.No big deal though,just the nature of this beast.Nothing else to report of interest.I promised a friend that I would go to bed early but ...sorry Pam.When you don't get home until 9 and I wasn't finished reading to the boys until 10 and I needed to spend some time with the girls,well,Midnight sneaks right up on you.Prayers that Zoey doesn't get whatever I have and that I can keep this from morphing into a nasty deal.Do I need to cry uncle now cuz seriously ..... enough.

"The Soul Would Have No Rainbow Had the Eyes No Tears"~ John Vance Cheney

First ..... Zoey is fine.I know some of you have been concerned and for that I apologize.The past fews days have been,well .... complicated.Primarily on an emotional level but in addition,physically exhausting.In many ways however,the emotional side is often the heaviest to carry.But,daily,I strap that weight on and move forward.And the fact that I keep moving forward,or keep moving at all, should account for something.My heart has ached lately for not only Zoey but for all the others I watch struggle each and everyday.The 4th floor continues to be a contradiction of itself.Blessings scattered amongst the sadness.I have come to the realization that once more I have become a member of a club that I, quite frankly, never imagined being part of.But then again,who does?I now have another extended family as well.Faces that bring such comfort to me as I walk through those doors each day.Be it kindred spirits facing the same fight as I,or my littlest love, or the staff members that go above and beyond daily, to assure that you never feel as though you are walking this journey alone.Like the lovely Laura that gave me this quote .. thank you Laura,you are a breath of fresh air,always.It has been necessary to pass through the last few days in order to emerge on the other side and face a new day.A different day,for myself,for my family and most of all for Zoey.One thing that has remained constant over the last few days is the strength and determination of this child.She has not skipped a beat.She has plowed through each little thing thrown in her direction and she has done it with such beauty and grace and most of all .... with a smile. Zoey has,from outward appearance,been seemingly unscathed by the the events of the last 7 weeks.She continues to amaze us all.Her numbers are all on the decline,as they should be and she will probably be getting a transfusion of red tomorrow as her coloring as well as her number is letting us know she could use a little pick me up.Other than that .... slow and steady she goes.The other kids are doing really well.Much better than everyone did in Round 1.We might just have found our groove.The older girls have become the "other mommies" and I am fairly certain that by now,that I am replaceable.They grocery shop.They bake cookies with the boys.They play games and make crafts with the boys.They take them to see Santa.They go to school parties and play "stand in parent"when needed at functions.I could absolutely go on and on.Jess and Taylor, you have done an amazing job and we are so proud of you.Caitlin ..... if you were here,we know you would do the same.Hey,wait .... you did do the same .... remember?We are managing.All of us coping in our own way and Mark and I?Well ...it's called autopilot.Wing and a prayer is often the way of the day.Speaking of prayers.I have a special request for a little guy named Thomas.Thomas is 8 and is from our town and has been at Children's since July.The details aren't necessary only know he is a loved and adored boy to many and he is in need of prayers,lots of them.Tomorrow he needs some great numbers from a blood test and I know that his family would so appreciate the added prayers on Thomas's behalf. Thanks to all of you for a quick word of strength to him and his family.Well,I don't have much more in me.That exhaustion I spoke of at the beginning has all but taken hold. Once again,our thanks for your love and constant support.

The Waiting Game Begins Again ....

Way too late for me to be posting.However,I am on this weird adrenaline rush and have decided to organize cupboards and do laundry, at a time when I should be taking full advantage of being home and being able to sleep in my own bed,uninterrupted by roommates,nurses,beeping machines and very loud hepa-filters.Instead, a post to end the day.Today went way too fast but I so enjoyed the time spent with the kids and the luxury of soaking in the comforts of home.I have missed the ability to just walk outside whenever I wish to take in the cool,brisk winter air or just feel the warmth of the sun upon my face.I managed to get a few Christmas errands done but mostly I just hung out with the kids.Taylor did work most of the day and Jess was up very early to run 10 miles with her Team in Training group.The boys and I leisurely got going and the morning evaporated before I knew it.We headed to Venture to meet Tate in the late afternoon and can I just tell you, what a doll he is?So cute and so much a McKay.Thank you to the McKay family for the gift of your friendship and the honor of being part of your amazing journey.After leaving the McKay's, we began our trek to LA to see Zoey.And what a trek it was!2hours to get there.2 hours!!! We put Christmas music on and tried to make the most of it but for a drive that should take maybe an hour,I was pushing my luck with the boys.Mostly Joe.Jake never really complained but Joe ..... If he said "OH MY GOSH" once, he said it 20 times but the line that cracked Jess and I up was "OH MERCY".We were dying laughing.Finally .... Children's Hospital and we were soon to find out that the drive was more than worth it for the boys.First,Zoey was so excited to see us.She was sitting up playing and smiling and reaching for us.So darling.We visited for a bit and we soon found out that it was Disney night there.When I say Disney night I am not talking characters I am talking actors and actresses.All young kids and young adults from all the popular Disney Channel shows."Suite Life","Cory in the House","High School Musical","Wizards of Waverly Place" ... on and on.Joe and Jake loved it and the evening was soon dubbed," pretty cool".Well worth the drive in the end wouldn't you say?.We stayed for awhile and headed out and much to our relief .... no traffic.We were home in about hour.More like it.We jammied up,read books and the boys passed out.Taylor and Brandon went to the store,bought cider and a gingerbread house and we finished the night enjoying each others company.And Zoey ... she looked great and seemed to be feeling really good.She was full of kisses and hugs.Her numbers today were a bit surprising.Her ANC has already dropped to 400 and whites are 1.1.Numbers have dropped way faster then last time.They say it is because there are no blasts, so hopefully we will see things bottoming out quicker than last time and coming up faster as well.Her g-tube site is beginning to get red and the minute infection is suspected they will bring out the big guns,Vancomycin and try and keep ahead of it going bad, like last time.I left the hospital tonight finding it unbelievable that our life has taken a turn where we have become a family of the 4th floor.A title I once feared more than fear itself but tonight I feel so honored to be one of those families.As much as I would trade this leg of the journey for Zoey, I am,in the next breath,so privileged to be walking this road in the presence of the most amazing children and their families.The faces I saw this evening,were smiles that reminded me once again of the resiliency of even and most especially, fragile lives.Their strength and their smiles give all of us reason to keep moving forward and to keep always,regardless of the seemingly insurmountable obstacles,to keep the faith.These children are my hero's and tonight as I momentarily struggled with how it is we happened to be walking the halls of 4 East,I looked at these kids,I looked at Zoey and saw all that is good and pure,raw and honest and even amongst the suffering I saw hope.Hope, although elusive in some moments, is still present ,when digging deeper and praying harder.Hope still manages to sustain us when we are most weary and broken.Thank you 4 East for your daily reminders and your constant nudging to see the good amidst the bad and the phenomenal gift of perspective.

Better Days .....

Thankfully, the past two days have proved to be kinder to Miss Zoey than Wednesday.It was as if her tiny body said whoa ... what the heck are you putting in me? After a bit,her body started adjusting and compensating for the orange nasty stuff.The same orange nasty stuff that is the only choice,the only option, if she is going to beat this thing.Her body has done a few different twists this time around.One being a sunburn type thing.That is what it seriously looks like.Any exposed skin,meaning not covered by her onesie or leggings or diaper,looks as if it has been sunburned.Really strange but from what I have been told,really common.Just pause and think about what is coursing through her veins and it makes sense that this toxic cocktail can actually burn your skin or rather appear to be burned by it.Very scary this chemo business.We have had visitors the past few days.My mom spent the day Thursday we us and my brother came by that same afternoon.We had a great visit today from our friend and resident Chaplin,Steve.We are so blessed to have found him on our journey way back when and we are so lucky to have him in our lives today.So thanks Steve for taking such a big chunk out of the end of your day,a Friday at that and passing the time with the princess and I. Today also, my friend Debbie,or Debra as she is known in some parts,came and SPOILED the princess.And when I say princess,let me tell you a few things she brought Zoey.First she brought her a pink princess wand.Then there was a glass dispenser with a pump, that we are going to very stylishly use for our infamous antibacterial hand gel obsession stuff.The stuff that we buy by the case,literally.She also brought her a very regal looking leopard print,pink and brown blanket and some gorgeous little lounging jammies.I will take some pictures as soon as she is finished with this rounds meds.Hate to have any of the "side effects" do damage,if you know what I mean.Speaking of meds ....tomorrow at two ..... finished.I am so proud of this little girl,once again.It is mind boggling to stop and think of what is being done to her body and then to look at her and see her smile and sit and roll around and just act as if this is no big deal.She is a superstar.Our littlest hero.Our warrior girl.Mark is with her tonight.I came home to happy boys and girls.The little guys have also weathered the week in a stellar manner.They have manged to keep their routine and have fun and not have their lives disrupted too badly,thanks to the love of our family and friends.Jess is home until the first week in January.I hope Zoey finds her way home before too long so we once again can spent a little family time ... all together.That's the hope and prayer.It becomes the waiting game after 2 tomorrow.Hard to know what to expect.This second round has proven to be slightly different than the last so we will have to take it one day at a time once again.This afternoon we got a new roommate.Her name is Sol Marie.She is a 2 year old little girl with AML,just like Zoey and Down syndrome as well.She is on round three and has never been home between rounds.She is so stink'n cute AND she has a head full of hair.I swear it is growing.Miss Zoey is holding tight with her hair as well ...maybe a little thinner but pretty much all there.I think this round will be a different story.I am prepared in some ways but in others ...not so much.I know,it's only hair.A small price to pay for a lifetime cure.That's all I've got.Tomorrow I am going to do some more Christmas shopping and try and finish things up.We are also going to a welcome home party for Tate.Remember Tate?The McKay's newest addition from the Ukraine, that they adopted through Reese's Rainbow?Well ...he's home and we are off to meet him tomorrow afternoon.I am so excited.Afterwards we are going to head down for a visit with Zoey when it gets dark so the boys can see the decorated grounds at the hospital and love on their sister for awhile.Time to call it a night.It' going on 1am and I am feeling the hourly nighttime diaper changes in the hospital routine.Thoroughly exhausted,I am.Hope everyone has a great weekend and once again we thank you for your prayers and support.

A Rough Day for the Little Princess .....

I knew the moment I walked into Zoey's room this morning that she did not feel well.Mark said she had had a fairly restful nights sleep,which I was grateful for, however,the morning was proving to be quite a different story.Zoey never,ever wakes up crying unless something is wrong and Zoey never,ever wakes up without a smile unless something is really wrong.Such was the case today.You could just look at her precious face and if she could,she would,tell you ..... "I feel like crap".Maybe she would say it in nicer terms but you get the idea.She spent the majority of the day in my arms, very restless and did some gagging and coughing but mostly crying.Finally we decided to give her a dose of Benedryl.Zoey does receive Zofran, an anti-nausea medication,every 8 hours but when that doesn't do the trick, the next option is the Benedryl to take the edge off.They gave it to her through her IV so it goes to work quickly and within 20 minutes she was out like a light for a 2 1/2 hour nap.She awoke much the same as the morning and by 7pm when Mark arrived we opted for another dose of Benedryl.I left and Mark called later to say that one of her primary nurses from the NICU came down and before the Benedryl kicked in, Zoey gave Judith quite the performance and was smiley and engaging.That did my heart good to hear that.I hated to see her so unhappy today but it goes with the territory and we are blessed as her side effects could be so much worse.Mark is there again tonight and I hope they both are able to get a good nights sleep.We continue to be roommateless,which is heaven.Zoey has had some "diaper issues" and until they can rule out a bug of some sorts we are in isolation.I for one am not complaining a bit.Here's hoping the tests take a few days longer.Other than that,not much to report.Christmas at Children's is beginning to get into full swing.They have decorated the outside courtyard in style.The lobby is a make shift Santa's Workshop ...with more presents stacked for the kids than you can possibly imagine.Today characters from Disneyland came around the floor and although Zoey was sleeping I managed to chat it up with Donald.Well,one of us did the chatting.Because if your not aware of the rules at Disneyland ...... no characters are allowed to talk.Everyone on the home front is doing a fabulous job of adjusting.The boys have been troopers.Taylor is back to playing mommy number two and my family and friends ,once again,are going above and beyond,taking care of the boys to avoid Taylor burnout.Jess will be on winter break come Friday and then before you know it ..... Christmas.It looks as if,with our week delay in beginning Round Two,that Christmas at home will be out of the question.I haven't really spent much time dwelling on it though.It will all work out and in the end,the bottom line is to get through this rough patch once again with Zoey, so we can spend a life time of holiday's, all together, as a family.That's what we're shooting for.Pray for a better day for my little fighter.My heart was a little heavy today as I watched her struggle.I felt so bad for her and wished once again I could take this all from her.Hardly seems fair.But as I pass each door on the 4th floor I am reminded that we are an army up there.Families and children doing battle.Facing an enemy and outfitted with the ammunition we need to get done, what has to get done, even if that ammo makes you throw up.Necessary evil in the war that wages on the 4th.Most of us also come equipped with our faith.That faith may waver in some moments,on days like today but that faith also remains steadfast and by our side ready to lift us in our times of need and ready to carry us when we feel far too weary.Pray for my warrior and all of her comrades.Remember to pray for all Zoey's friends that you find on the sidebar as well.They are all courageous fighters,some with different battles but each far stronger than any child should have to be.These children are always close in thought and prayer with me each day.I have often felt as if I have let them down and neglected them over the last month or so, as my mind and body has been otherwise occupied but to all of Zoey's friends and their families know you are always,always with me ..... carried in my heart where ever I go.Till tomorrow ...

Round Two begins ....

Oh,boy .... two weeks at home could spoil a girl and I'm not talking about Miss Zoey.The rude awakening of the 4th floor hit with a vengeance.Were are back at inpatient status .... after waiting around 8 hours,walking the hospital aimlessly,until a room became available.What an absolute nightmare and I must tell you,it did not make for a happy girl.Again .... I am not talking about Miss Zoey.The morning did however start off fairly well.Really well actually.Zoeys ANC jumped from 350 to 1260,which was the go ahead to start Round Two.Zoey headed into the OR for her lumber puncture and I took a deep sigh of relief.After Zoey's lumbar puncture and a dose of chemo through that puncture site,we found out that her doctors assistant dropped the ball and never put in our orders to be admitted.That meant that the floor was not expecting us and that was not a good sign.It became a waiting game.So we waited and waited and waited.Mark met us over at the hospital later in the afternoon and he was less than pleased.And when something riles him up,you know it is a big deal.Zoey was a trooper though,as usual.She had to wear a mask all day while meandering the halls of beautiful CHLA and there were moments when she wanted nothing to do with that mask.Who can blame her?It is an ADULT size mask.Can you believe that the hospital carries no children's size masks?This is a CHILDREN'S hospital for crying out load.We ordered some kid size one's on line but found out that their thickness was not enough to protect her.I am bound and determined to find some place that carries a type that provides enough coverage AND fits.Enough complaining ..... although there is SO much more I could spew out.We finally made it to our room at 6 and due to yet another error with orders,we could not start chemo until today.But start we did.At exactly 2pm.That means that at exactly 2pm Saturday, Round Two's medication portion will be finished .... yippee.Zoey has been an absolute doll.She was so smiley and happy from the second we hit the floor.Except, for the first hour and a half after chemo started.That first little bit of time found her a little nauseous.Nothing too overt but some slight coughing and a couple of gags here and there but that was it.It passed and she was her happy little self.She amazes me each and every step of this journey.As much as I was sad to have to bring her out of the comforts and confines of her safe little home,I know this is where she must be.And what a difference my state of mind is this time around.I feel much more comfortable and confident and I feel more peace taking over the uncertainty.Perhaps it is called Gods grace.I think it is.I hope it is.I pray that it is.I forgot to pack the camera but just scroll down to any number of the pictures below and that is how you would have found Zoey today.Waving and smiling.Well,it's almost midnight.Laundry to finish and then bed.That familiar feeling of exhaustion is creeping in,except this time the heavy heart part doesn't seem as intense.It is present but not as overwhelming and for that, I am so thankful.Keep those prayers and good vibes coming ...... Zoey is counting on them.

"Unselfish and noble actions are the most radiant pages in the biography of souls." ~David Thomas

Speechless,absolutely speechless.The scene today at Zoey's Cut-A-Thon was nothing short of amazing.Mark went first,shortly after it began and called me immediately.I could not hear or understand him through his tears.He arrived to find that 100 people had started lining up at 9:30 for an event that began at 11:oo.People signed in and waited,some for hours and at the end of the day,some in the rain.People came from miles away.Mostly strangers.They came because they read of a little girl.One that they have never even met but they felt drawn to nonetheless. Perhaps it was her smile and glint in her eye.Perhaps it was her story of courage and resiliency.Whatever the the reason,they came.One darling couple,who spoke of their only child,a daughter, who was 65 and living in Hong Kong.I give you these details to give you an idea of their age.But age did not matter, as the spirit that they emitted, was absolutely ageless. They waited and poured coffee and waited some more.Stylists cut person,after person,after person.All day long.People volunteered their time to wash hair,sweep floors and sell raffle tickets.Spent literally hours taking down names and calling them one by one as it became their turn,They kept food and drink flowing. Stylists came from other salons.All for Zoey.And the rest of us too.I was touched beyond words as I arrived to find people lined up,sitting in chairs along the sidewalk,chatting with strangers beside them helping to pass the time.Some were reading books.Some were reading the newspaper and all of them kept on waiting. There were bagels,pasta,coffee,drinks,goodies ...all donated.I have story after story I could tell but each of them special in their own right,I would hate to include one and leave any of the others out.Suffice it to say,Mark and I were reduced to tears at several times throughout the day.The only thing missing .... Zoey.I wish she could have been there.She so loves people.If she had come, she would have met a few new "friends" just like her.One is Hope,daughter of one of the incredible friends that made this day possible.Another one was Caitlin who, like Zoey, came into this world with a multitude of issues but today is a 14 year old healthy, happy young lady.Then there was Harrison.A 1 1/2 year old cutie.Who's mom and dad and older sister stayed all day and filled the place with their positive attitudes and endearing personalities.My friends,our friends,old and new, showed us the beauty of the human spirit.True unconditional love.Every single person went above and beyond and today,like many times in the past,I was so proud to be a part of such a generous,unselfish,loving community.Tonight I go to bed with my head full of wonderful memories and my heart filled with immense gratitude for a day that was overflowing with love because of this miracle we call our tiny warrior.Zoey and I are off to Children's tomorrow.Take two, on Round Two.I really hope it is a go this time as we are anxious to get things going again.The sooner we do,the sooner we say goodbye to this latest leg of Zoey's journey.I will keep you posted as the day progresses.Please keep the little love in your prayers,as I know so many of you always do.To our family and our friends and to our community of Camarillo and beyond,we love you and thank you from the deepest parts of our hearts.

"It Takes a Village to Raise a Child"~ African Proverb

Tomorrow my family and I will find ourselves, once again, humbled by the outpouring of love and support by a community that has embraced us as their own. This community has, time after time, stepped up and given their time, talent and treasure to those finding themselves in places of financial and emotional bankruptcy due to circumstances that have quite frankly, taken them out at the knees. We have always tried to be a family that believed, "There but by the Grace of God goes I." But 21 months ago we became one of those other families. One of those families that found themselves in a surreal place, one that found another obstacle waiting for them around each upcoming corner. Zoey's birth brought such immense joy and at the same time, found us frantically treading deep water, trying, to no avail, to keep our heads above water. We would not be where we are today if not for the generosity of this amazing community that supported us in more ways than I could ever possibly tell you. They have come to love our littlest love. They have come to love us and we them. Tomorrow, the shop where all 8 of us get our hair done, is putting on a Cut-A-Thon in honor of Miss Zoey. The shop is opening their doors on a Sunday and these dedicated stylists are giving up their day off to cut hair from 11-4. They are selflessly giving up family time and their precious down time, for us. This community of ours has donated food and drink and products for raffle, all for us. Stylists are coming from other salons and people are volunteering hours of their day, all for us. People are giving, when I know it is a time, in all of our lives, across this country, when things are far from easy for anyone. I recently responded to a friend here in California, on a post she did on the state of our world. At a time when we are so very disheartened by the greed and disregard that so many in places of power have shown as they wielded their strength for personal gain. I am still rallied by mankind because so many have instead shown that the heart of life will not be broken. I am awestruck. I am proud. I am so very blessed. Pray tomorrow for this community of mine. That their kindness and love will be repaid tenfold. Continue to pray for Zoey. She has brought together strangers who will now be life long friends. She had bonded a family to a community, forever. She is the ultimate definition of Grace and I will never know what I did in my life to deserve such a perfect child. A child that radiates pure goodness. A child that came to show us the way. Tomorrow is sure to be another example of that. Tomorrow comes and with it lessons learned, blessings bestowed and the gift of one little girl's life shared by a community. A village, doing what it does best, raising up a child.

Soaking in the little things ......

As much as we are anxious to get Round 2 underway so we can get back to living life,I cannot adequately express to you what a gift it has been to have these days at home.Come Saturday, it will be 2 weeks total since we left Children's.That equals almost half of the time spent in the hospital with Round 1.Speaking of which,it is amazing, that as we trudge through what seems like unbearable ,unimaginable, never ending moments, that those times seem to fall into the recesses of our minds and hearts rather effortlessly.Now mind you,I won't soon forget many of the things that Zoey has endured over the last 21 months but as time passes,the sting seems less,the deep pain in my heart eased a bit.A reprieve until I have to prepare for the next onslaught.I have appreciated and cherished each day home.Made the most of each moment.We of course have not been able to venture out of the house but that has been fine.Being home has been more than enough.I love being able to enjoy the Christmas decorations,watch movies,read books.Just spend time with the kids.Get reacquainted with my husband.Reconnect with family and friends.I have missed all of it and will miss it all again during Round 2.And 3. And 4.And 5.But then,God willing,we will be able to place that in the been there,done that and most importantly:conquered that,category.Zoey is racking up impressive numbers in the conquered category.So many for such a little thing.Thank you for all the beautiful comments from my last post.I am humbled as I read each one of them and I am once again awe struck by the impact this child has had,the mark she leaves daily,in the lives of so many.You all are just as much a blessing to us, as she is to you.Our load is lightened by your presence in our life as we continue on this latest journey.And for the record,I am putting in a request for say,a,more light hearted destination next time.These last ones have been less then desirable.Could someone put in a complaint with the travel agent that booked them?We have been less then satisfied.Refund please.

So maybe the day wasn't so crappy after all .....( If you haven't aready,you might want to read the post below.Then you'll be up to speed)

Five weeks ago today,Zoey was diagnosed with AML M7.At diagnosis she had 68% blasts or in other words,68% of her cells were immature cells and thus meant she had Leukemia running rampant in her body.Fast forward to a few hours ago:Mark called Zoey's oncologist because I was too whimpy or just too down right scared to call myself.Actually,to be honest,I stayed relatively calm while awaiting the results.Truly knowing no matter what the emotion that I let take hold of me,nothing would change what was to be.So Mark called me around 12:45 and my heart did do a little skip when I saw his number come up, as I knew why he was calling.He spoke to Dr.Gannon and the news ..... no blasts in the marrow.How's that for fabulous news?Totally offsets the events of this morning,to say the least.Her doctor was pleased and we were,well,beyond pleased.He did use the "R" word.Now, I am not talking about the "R" word I hate, that people use to describe others with intellectual disabilities,I am instead talking,remission.That word now becomes a new "R" word to me as I just am not ready to speak it out loud.That word both thrills me and terrifies me, so we take today for what it was, which was really great news. We go forward as planned and do all in our power to kick this thing for good.Or help Zoey kick this thing for good.I will remain cautiously optimistic,as we have been burned by unbridled optimism before and we know this particular journey is still so new and things can change on a dime.Remember,we still have 4 or 5 other rounds to see Zoey come out unscathed by.That will certainly require faithful prayers, with a little luck thrown in for good measure.At the same time, I intend to rejoice as these miraculous milestones occur.For they are miracles.Zoey is a miracle and for today .... my tiny warrior is doing really spectacular.We will embrace our extra days given to us before a new Monday arrives.We are thankful and grateful for this latest news.Thankful and grateful are not words that actually do justice in this moment.When I come up with an adequate description on how I am feeling,I'll let you know.For now,in this moment, I feel peace.

Best Laid Plans ......

Well,we are home and when I say we, I mean again ..... Zoey and I.Can you believe it?After all the physical and emotional preparation for the day ..... it was basically a bust.We did leave at 5am.We did do all our pre-op stuff and we even did the bone marrow biopsy but due to a low ANC level ...chemo has been called off.At first I was freaked out.I thought,oh no,what is her blood doing now?After taking a breath and talking to the doctor,the deal is this.On Monday,her ANC,which measures her immunity fighting capability,was 690.They like it at 750 before they start a round.We thought we would be fairly close or above the mark by today but instead Miss Zoey has decided to DROP to 350.All the rest of her levels are great.In fact white count is up a bit and hemoglobin is up a little too.Platelets are holding strong at 198,000.So all is well except for those pesky neutrophils.The doctor assured me that it often takes some ups and downs with the neutrophils before we get to where we need to be.We also have discovered in the last few days that an adhesive they use to cover her port is not liking Zoey's skin or rather Zoey's skin is not liking it!We will need to switch out that adhesive,especially as she starts round 2.I tell you,this child certainly keeps us on our toes.We will try again Monday for chemo.We did go ahead and do the bone marrow biopsy though and we should have those results in a few hours.I continue to be slightly nervous about those impending results and will be anxious to see what it shows.I am also disappointed because this latest set back means we for sure will not be home for Christmas.As bummed out and sad as that that makes me,I have to keep the faith that we just need to bang this thing out and we then will be assured of a lifetime of Christmas's together.So,that's the deal.I will post later on the biopsy results.Pray along with me on those.No blasts would be ideal.Minimal blasts would be tolerated but major blast activity might just solidify this as being a truly crappy day.Let's hope not.For the little loves sake .... come on world,cut her a bit of a break,would ya?Oh and by the way,I might not be smiling but guess who is?This child took everything in stride and has been happy as can be.I guess I should continue to follow her lead,shouldn't I?

The Eve of Round 2 .....

This beautiful collage of Round 1 pictures came courtesy of our friend Kele.Yes,in her spare time being a working momma of 3 little darlings, under the age of 3,she found time to put this sweet gallery of photos together.Oh,did I mention that one of those three cuties is Miss Presley,aka,little butterfly,who came into this world with a little extra something,something and is currently keeping all the Giles on their toes.Well,thank you from the bottom of my heart Kele,I love you for loving us and I'd love you even if you didn't! Tomorrow Zoey and I have to leave at 5am.Scary,early time.That means I will be rising around 4am. Which means I really should have been in bed a long time ago.But there was so much to get done.And I think it's done.As much as going to get done at this point.Our bags are packed and that's that.Because it has to be.I hate leaving with Zoey.Jake made me so sad tonight.He is my quiet one.Thinks alot,knows alot,feels alot but pretends he doesn't.Well,as the boys were saying goodnight to Zoey,hugging and kissing her,Jake very innocently said,"Mom,how long was Zoey in the hospital last time?"I say,"24 days".He slinks off to our Advent box,numbered up until Christmas day and I see his little head bobbing up and down counting the doors remaining until Christmas.Broke my heart.Everyone is going to miss her so much.We all,well Taylor,Jake,Joe,Zoey and I,sat and turned off the lights and made some popcorn and watched "Santa Claus is Coming to Town",in the glow of the Christmas lights.Zoey was so enthralled with the darkness and the movie and just watching her brothers and sisters. She loves them just as much as they love her.You can see it her eyes.We all will be fine.We have to be.We are slightly more prepared this round.Hopefully that will ease the transition.Please continue your faithful prayers for our little love.We,or probably more I than anyone,am a little anxious about the bone marrow biopsy tomorrow.I think it will be telling as to the direction we are heading.No one has said as much and I haven't brought myself to ask.I think because I know the deal.I know what we and her doctors are hoping for.We continue to look to God for our guidance and to Zoey, to lead the way.I am proud beyond words of this child.Actually of all my children.They teach me daily and show me that even at my age,I still have so much to learn.Thank you to my big girls who I know will be reading this.I love you all.Thank you for taking such good care of your brothers and of me.To Mark,who bore the brunt of the majority of my fear and frustration last round,I promise to try hard and not let loose on you and take everything out on you as if it were all your fault.Try, being the operative word.Just being honest.And to all of you who have taken the time to keep coming back .... it cannot be said enough,thank you for your support and love and unwavering prayers.Round 2 .... here we come.

Alrighty then .....

Well,my friend Kele is trying to work out the kinks with the button deal.Kele is my sweet friend that actually spent hours creating Zoey's button for me in the first place.Today she accidentally deleted Zoey's picture from her photobucket account.I still love you though Kele and won't hold it against you,promise.So .... it appears that Zoey's picture is back on my site but not everyone else's. I have no idea if the code is correct for everyone to try and grab it again but it would be great if someone could give it a try and see if it works.Taylor added the code for me because, after having this blog for nearly 9 months,I continue to be utterly and completely incompetent with computer technology.So, it looks as if we will need to ask all of you,our amazing friends, to re-grab and re-post her button to your sites.I know .... a pain in the neck but we really,really appreciate all the support you have given us by putting Zoey's story out there in the first place.We couldn't have come this far without knowing that we have had the prayers of countless friends,family and selfless strangers,to rally behind our tiny fighter.Speaking of which,an update on Zoey's appointment.After a nasty 1 hour and 45 minute commute this morning, we made it to her appointment.Be it late but at least there.I was not a happy camper, as depicted on Zoey's shirt today.Ironic thing is,I was also wearing a green happy camper shirt as well and it certainly did not accurately depict my mood of the morning.Be that as it may, we arrived and got down to business.After re-accessing her line,which trust me is not a pleasant experience,with or without numbing cream,she had her labs drawn.After a wait on those results and a wait to see her oncologist we finally had numbers and we are officially a go for Round 2 on Wednesday.I will be so thrilled to get it under way.What ever comes,comes but at least it is forward motion.Her platelets are 207,000,which is fabulous.Her hemoblogin was 10.8,great too and she had 0 blasts.Which made us all happy.Now,the real test will be her bone marrow biopsy on Wednesday.Ideal would be 0 blasts there as well.Here is hoping and praying for that to be the case.Happy would not even come close to being an accurate emotion if that becomes truth.So it remains a bit of a waiting game for now.Something I have learned or shall I say, am attempting to learn, to be comfortable with.Waiting.Today found us all getting back into the swing of things.Back to routines.Not all bad but I certainly preferred the tempo of the last week.What a gift it was.Truly a time of thanksgiving.I feel fairly prepared for Wednesday.Semi feel as if I have the lay of the land down on the 4th floor.I will be dreading leaving my family.Separating our lives,if only momentary.They all will miss our little princess but go we must.I go though, with a certain sense of peace knowing there really is no other choice.No other decision to be made.The lack of choices make things less complicated in many ways.I was able to decorate for Christmas this past weekend,do some shopping and get our cards out.All of which made my type A personality very happy.I leave here on Wednesday with my littlest love and I leave ..... hopeful. Hopeful feels comfortable to me for right now.How long that feeling stays, remains to be seen.My wish is .... indefinitely.Wish along with me,won't you?

If you need help on grabbing the button for your blog:
1.Click layout
2.Click "Add gadget"
3.Select Html/Java Script
4.Copy and paste the code under Zoey"s Button into content box
5.Click Save
Let me know if it works ..... what a hassle one little thing has been!

Where the heck did Zoey's button go???

Help!!!! I signed on and found that Zoey's button is missing!I have no idea where it went.Any idea's? It is gone from everyone's site who has posted it also.Bad timing seeing that she is being readmitted on Wednesday and she needs all the prayers she can get.I will keep you posted and try and figure out what happened.I will post a little later and give you an update on Zoey's appointmnet today at Children's also.Stay tuned ......