So far,so good .....

Arrived home, after the hand off with Mark, at almost 10:00pm.Dropped my bags and changed my clothes and immediately crawled into bed with the boys to read.Yes, it was late,way past their bedtime,yes we were all extremely tired but skipping our nighttime reading is never an option.Three books later,one asleep,one still restless and I decided to stay put a bit longer until he settled in.Well,perhaps I did the settling first because before I knew it,I was awakened by an elbow to the face.My little cat nap rejuvenated me enough to tackle the house discord,unpack my bag and do some laundry.Now,at 1:15 am,time for a quick Zoey update and off to bed.Zoey is handling things beautifully.Feels like the calm before the storm and from every one's opinion ... that is exactly what it is.At this point she has received three dose of her ARA-C with one more scheduled for 10am tomorrow morning followed by the dreaded PEG shots.From the outward appearance of things,Zoey seems unscathed by the process.In addition to the chemo every 12 hours she also has to have preventative eye drops every 4 hours and believe me,if she is asleep,this rude awakening makes her none too happy.The plan is to draw labs in the morning,administer her last cycle of chemo,give her the shots and send us packing.No fevers,which is the biggest side effect that we would see at this point and with none so far,chances are we will head home.However,if by chance her ANC drops very far from the already low of 780, than the better option would be to stay put.Because what will definitely happen during the time home infact she will more than likely drop completely to zero before our readmit on Tuesday,the chance of infection is so much greater.That decision will have to wait until labs are in.I'm tired.She is tired.We are all already tired at this very early stage of the journey.Scary when we know there is a whole lot more that lies ahead.Time to gather the reserves and buckle in for the bumpy ride that lies before us.Thank you for all the amazing comments left in support of our Zoey and the rest of us.Those beautiful words of encouragement continue to sustain us for each new day.We will keep you posted.

*Picture two depicts exactly what Zoey thought of our arrival to her room at CHLA.She had dirty looks for the first few who crossed her rooms threshold.Even choosing to drop her head and look away as some of her favorite doctors and nurses came to greet her.Within a very short period of time,Miss Zoey adopted the look of photo one and I am happy to report has continued with that magical spirit that only our little love can so beautifully exude.

And we are off ....

After much hoopla,we finally got a bed.Zoey and I are about to head out in a few minutes.Zoey will start her high dose ARA-C tonight,followed again every 12 hours until Thursday morning.Thursday afternoon she will receive her Peg shot and if and only if,she hasn't spiked a fever,we will be sent home for 5 days.If and it's a big if,if she stays fever free we will not return until Tuesday at which time the entire course will be repeated.After ... we wait.They warn you that count recovery may take 4-6 weeks.Any way you cut it this will be a difficult and long round for our little love.Prayers for Miss Zoey everyone.She is going to need every last one of them.

Zoey made counts to begin her final round but .....

..... there is no bed available for her. I cannot believe it. There is always a bed waiting and when there is, she doesn't make counts and today, her final round ready to start and no beds. A bit of frustration that made for a very long day. An emotional day. A day filled with a whole lot of waiting time for me to ponder the happenings of the last 6 months. And here we are. We have arrived. Zoey has arrived. Her tiny body has been put through the paces and she has barely missed a beat. Her strength, her resiliency, her courage has taken her to this moment. Her indomitable will to survive has taken her to this moment. Today was the very first day in months that I did not arrive at CHLA with a pit in my stomach. Today I sat, stood and walked waiting for labs, free of anxiety and worry. God brought a peace to me today. A peace that tells me,no matter what, we have done anything and everything to ensure Zoey got to this moment. We can do no more but continue forward with great hope and faith for her future. Zoey weathered the day beautifully. But what else is new. She was fed up with wearing her mask after hour five and who wouldn't be. So at 3:30 we loaded into the car and headed home to wait for a call for an open bed. As I am finishing writing this, at 8:45 pm, I know that tonight won't be in the cards. We will call in the morning and hopefully they will be ready for us. We left her accessed and they sent me home with heparin to flush her line if we aren't back by 3:30 tomorrow. I sure hope we are. Zoey is ready I can see it in her. Strong and ready for this last hard hit. Her doctor looked at her numbers today and said, "Let's do it. We're not going to cure Leukemia waiting around." But we will wait, one more evening, one more day and then we fight, one more time. Zoey fights one more round. And it is a big one. In one week she will be hit with 2 rounds. High dose ARA-C and PEG shots. No count recovery. Scary stuff. Today, as I was helping Jess move some of her things, I was looking at a bulletin board she had put together that hung in her room at her condo. What I found was the following and although I am very familiar with the first stanza, I had no idea there was more. The beginning, from my understanding is the original text by theologian Reinhold Niebuhr with additions under some scrutiny as to the author. Regardless of the exact origins of added verses, this prayer was what I needed today:

"The Serenity Prayer"
God, give us grace to accept with serenity
the things that cannot be changed,
Courage to change the things which should be changed,
and the Wisdom to distinguish the one from the other.
Living one day at a time,
Enjoying one moment at a time,
Accepting hardship as a pathway to peace,
Taking, as He did,
This sinful world as it is,
Not as I would have it,
Trusting that You will make all things right,
If I surrender to Your will,
So that I may be reasonably happy in this life,
And supremely happy with You forever in the next.
Amen.

I needed this reminder today. Do you see why I say that I continue to learn from my children on a daily basis? They continue to be my greatest teachers in this life. Thank you Jess. Please continue your prayers for our tiny warrior as her journey continues. I will keep you posted on the events of tomorrow. Should be interesting.

"A Pair of Shoes" revisited .....

On the day of Zoey's official diagnosis, I posted this poem. I would have had no idea, on that very surreal, very terrifying day in late October, what this poem would actually come to mean to me and the new journey we were about to embark on. Almost 6 months later, I have learned more than any mother should ever have to learn. I have seen more than any mother should ever have to see. I have watched helplessly as other mothers endure more than any mother should ever be asked to endure. These things and a myriad of other feelings and emotions are far too complex to encapsulate in a simple posting. Suffice it to say, I am changed. Forever and irrevocably changed. I stand shoulder to shoulder with some amazing other mothers. Doing all we know how to do in these moments. Which is to continue to walk forward, into the unknown. Led only by unwavering faith in the inexplicable and guided only by the light of our magical children. Some children here with us, others guiding us from a place we can only imagine the beauty of. Today, I walk on ...

A Pair of Shoes

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.

Each day I wear them, and each
day I wish I had another pair.

Some days my shoes hurt so bad
that I do not think I can take
another step.

Yet, I continue to wear them.

I get funny looks wearing these shoes.

I can tell in others eyes that they
are glad they are my shoes and not
theirs.

They never talk about my shoes.

To learn how awful my shoes are
might make them uncomfortable.

To truly understand these shoes
you must walk in them.

But, once you put them on, you can
never take them off.

I now realize that I am not the
only one who wears these shoes.

There are many pairs in this world.

Some women ache daily as they try
and walk in them.

Some have learned how to walk in
them so they don't hurt quite as much.

Some have worn the shoes so long that
days will go by before they think about
how much they hurt.

No woman deserves to wear these shoes.

Yet, because of these shoes I am a
stronger woman.

These shoes have given me the strength
to face anything.

They have made me who I am.

I will forever walk in the shoes of a
woman who has a child with cancer.

*Author Unknown*

Be forewarned,language content may not be for all .....

I am pissed.Absolutely pissed.But in all honesty, more devastated than anything.If you have been bombarded over the last 6 months with downer posts about children with cancer,their unimaginably unfair and barbaric treatments and word coming that despite even those unimaginably unfair and barbaric treatments, they still won't get their miracle,then you better stop reading now.However,if you care,once again,to step momentarily into the world that was thrust upon us 6 months ago,then continue.I do promise this new world of ours, is packed full of beautiful moments but beware,it is simultaneously riddled with unspeakable sadness.Today more sadness and this one blindsided me and took me out at the knees,literally.Background is simple.Beginning of round 3, I spy this amazing pirate clad child roaming the halls.Bald of course and his face new to me.It's not as if I know all the faces of the 4E but if you have been there as long as we have,you have come to recognize the regulars.Well,I stop,say hi and ask him his name.Pablo he tells me and in that moment I know I am in the presence of something or rather someone, pretty darn special.Not that all these kids aren't special but some,well,some just have this aura that is indescribable.Pablo is one such kid.Out from his room steps mom,darling Jo Ann and yes they are regulars but from 4W.Transplanted to our neck of the woods due to shortage of beds.Which,in and of itself is pretty sad, that the oncology floor lacks enough beds for the number of children that are battling this nasty demon.Hate every aspect of this beast.Anyway,I could go on and on and tell you story after story about Pablo and his amazing family but instead,could you go here.Get to know him yourself and then pray for him.Because he really needs it.Badly.And so do Jo Ann and Jeff and Grady and all those who love Pablo.This is my life now.Pablo and his family have become family. As have the others that walk this parallel journey beside. us.We have come to love them.Every single one of them.That is all I have for now.Not much left in me at the moment.I suppose my language wasn't all bad, was it?I let most of it fly before I started posting.I have more but for now I am numb.I will continue to pray.And hope.Because sometimes,on a day like today,there is nothing else left to do.

Fairly Uneventful ....

.... just the way I like it.The day flew by.Much like the rest of our days around here.Back to school.Children begrudgingly tumbling from bed.Parents feeling much the same.But once we got rolling,things did just that,rolled right along.I must say,we are pretty cohesive,this team of ours.We have learned to work together to make this small army we have,work.The little guys included.Even the big girls who aren't here on a daily basis,contribute in their own,much appreciated way.Today for instance,calling to check in on Zoey's appointment.Chatting with me and giving me some much needed adult conversation that I often yearn for.Taylor,who does more than her share,by default, as she is the only one of the older set still at home.She watched the boys for me while they swam this evening.It is brutally hot here and a night swim was a perfect way to end a Monday.Then there is Mark.Poor guy.Pulled in a million directions.Even gave up a chance to go to a Laker game yesterday because he felt there was too much to get done and not enough time to do it.I encouraged him to go but he insisted on staying.The day today played out much as I had hoped and prayed it would.Zoey's labs were fine.Did I doubt that?Of course I did.Probably always will.Chatted with the doctor a bit a longer than I normally do.Asked some tough questions.Like prognosis and expectations.I am not big on question asking and I no longer google ... anything.I did when we found out she would probably be born with Down syndrome.I did for strokes suffered inutero.I did for Infantile Spasms and hemispherectomies.Leukemia,not so much.I know the deal.Zoey is either going to remain in remission and be considered cured after 5 years or ... she's not.So instead I ask very few questions.Ones that I am often asked from those wondering but steer clear of asking myself,like when can we consider ourselves,or rather Zoey,out of the woods.AML relapse is earlier in the disease progression then say ALL.The first 6 months will be critical and he said,if we can make it through a year then we are in fairly good shape.80% cure rate,didn't much like that percentage.I was actually under the impression it was higher than that but he knows his stuff I suppose.To her advantage,number one her age and number two, fact she has Down syndrome.Those things I liked.Besides that, I quit while I was ahead.He did say go home enjoy the week,take her out in the sunshine and fresh air and come back next Monday.Those things I REALLY liked to hear.Her numbers actually looked good.White :3.7.hemoglobin:14.4,platelets:188,00 and ANC 530.Not bad.Higher then I thought it might be and if she can kick that ANC above 700 we can get that ball rolling for the 5 and final round.Time to get going.It has been a long 6 months and it is time to wrap this up,wouldn't you say?.Zoey was a doll today.All except for getting her port accessed.That girl is so smart and so anticipates things.The good and bad and when the nurses pull our their sterile tray and she sees those gloves,oh boy.Screaming child like no other.We have seen a real burst of development in Zoey's cognitive understanding lately.To some it may not seem like much and to most others her age,even those with Down syndrome, it pales in comparison but for Zoey and especially after all she has been through,it is huge.She continues to astound us daily.She continues to remind me of how very blessed we are to have this amazing child in our lives.On another note.Sweet Kai has taken his place in the BMT unit.A new beginning.A new chance.I did not see him or his mom Rachel today but my day at CHLA did end perfectly.As I was loading Zoey in the car I saw Kai's dad Wes.I was able to give him a big hug and tell them how much we loved them.How very much we love Kai and how much we will be praying for them all.Everyday.And if you didn't get a chance,click back on my last posts comments and check out the lyrics that Kai's mom Rachel posted for me.After all she has going on,I was so touched that she would take the time to write those amazing lyrics down for me.Thank you Rachel,the words are perfectly beautiful.That is about all for the Monday wrap up.The rest of the kids are doing well.Caitlin is feeling great.She hit 28 weeks already and it is mind-boggling that the newest member of our family will be here in 3 short months.Jess is the final week and a half of school and I will add mother to a college graduate, to my list of titles.She is looking into nursing programs for September and hopefully that will fall into place fairly effortlessly.She has a few other ideas floating around if she is unable to attend until springtime though.Taylor has decided on Pepperdine after graduation and we think it will be a perfect fit for her.And the boys,well they are the boys.Carefree and happy,just the way I like it.As for me ... fine.Tired,a bit anxious but on the whole,managing.I am good if my family is good and for today,it's all good.

Monday comes ....

And with it, back to routines and our daily grind.I have so enjoyed this week.Filled with good stuff.Memory making stuff of the everyday garden variety kind.The best kind,if you ask me.Tomorrow Miss Zoey and I head to CHLA for labs and a clinic visit.I must tell you, that I just can't kick that nasty feeling that I refer to as,lab-anxiety.Hate it.Just hate waiting ... for ... those... darn ... results.Nerve wracking.It never gets easier and never will.No way around it though.Tomorrow we will see how deep Zoey is into marrow recovery.I venture to say,not very.That will only mean more time at home,which is never a bad thing.Only delays the inevitable final round but again,nothing we can do about that either.Tonight a very abbreviated post.Morning will come all too soon.Before I leave you I want to tell you or rather ask you to keep a very sweet little guy in your thoughts and prayers.His name is Kai and I posted about him awhile back.When I posted,Malachi was in need of a bone marrow transplant.Well, a match was found for this darling boy and tomorrow Kai heads into the 4th floor BMT unit.There his body will be taken to the very edge.All a necessary evil to ensure that Kai has every opportunity to grow up and live a joyous,long and beautiful life.The toll this takes on these little ones is unimaginable.The toll this takes on their families, is unimaginable.But there are no choices here, so tonight we send our prayers of strength and courage to the entire Smith family.We especially pray that God will protect and carry Kai through these most difficult of days.Our family is filled with incredible hope for Kai and we ask for you to have the same.Hope and faith, that this precious little guy will weather this current storm so that all of his tomorrows are colored with nothing but the glorious rainbows he deserves.

For Jean and Mike ....

I was merely a stand in last night.Nothing can compare or replace the amazing parents Matt has in the two of you.I was honored to be there and feel privileged to have Matt in our lives.

* Senior night at Pepperdine.Matt's parents were unable to attend as they live in Chicago and will be coming out in less than 2 weeks for graduation.Happy to have done it as I have come to love Matt as my own.

Enjoying the moments ....

This week the boys and Taylor have been off for spring break.How great it has been to be able to relax and do absolutely nothing.No hectic schedules,no early rising,no lunch making and most of all,no driving to CHLA.Having Zoey home this week has been such an incredible added bonus to it all.Although we can't actually go and do much of anything,this time together,has been just what we all needed.I have watched 4 movies with the kids this week.More movie viewing in a short time period,then the entire last two years.I have managed to do some spring cleaning and organizing too.Jess and Matt both graduate from Pepperdine in 2 weeks and both will be moving in here for a bit until they get established at their new jobs and have some money saved to venture out on their own.No small feat in today's economy.I will selfishly love having them here.In fact it is my underhanded way of starting that compound that I talk about so often!Space is at a premium around here though, so I have had to do some creative space making.I actually love organizing,weird I know,so it has hardly seemed like work.I love taking chaos and making order.I think it's the control freak in me.The boys have had swimming lessons every morning this week.Taylor and I have switched off taking them and staying with Zoey and today,Mark surprised us and took the day off.Tomorrow too.I so wish we could go and do things as a family unit but no can do.At least Mark will be here and try to squeeze in a few fun things with the boys.Taylor heads to San Diego this weekend to go to Sea World and visit Caitlin and Danny.Matt has his senior Volleyball game tomorrow night and with his parents in Chicago, I will go and be stand in mom.So we have a few things going on here and there.Zoey and I have transitioned to being home effortlessly this time around.Makes me realize how ready I am to reclaim our lives.Zoey is doing well.No cough and only a slight remnant of a stuffy, runny nose.She is tired though.With each passing round you see how much of a toll the last almost 6 months have taken on her.I think I see it the most because I am with her the most.I cannot wait to be able to bring her out into the sunshine.Take her for walks.Get her back into the world again.The home stretch is here.Monday we head back for labs.I am certain she will not be anywhere near ready for the final round.Chances are round 5/6 will begin around the second week in May.I have to pause sometimes and think about this journey we have traveled since October.I have to speak out loud : My child had cancer.My child had leukemia.My child is in remission and is winning this latest unfathomable to most,battle.The last two years have been riddled with fight after fight.War waged on so many levels.Each one Zoey has faced and triumphed.This can be no different.I have no idea what God has in store for us all.For Zoey.But I do know that this life,Zoey's life,has changed us and our family in indescribable ways.Magical,joyous,beautiful ways.Heart wrenching,difficult,inexplicable ways.This week I have lived my moments knowing that normal or a new normal, is within my grasp.Once again I feel capable and confident.And that,quite frankly, scares me.I have stopped just short of comfortable because each time I have found myself dwelling in that particular comfort zone,Miss Zoey has decided to shake me loose from that place.For now, I will take capable and confident and thank God for bestowing that on me.I thank Him for that and so much more daily and I especially thank you all,Zoey's own personal fan club for praying for her and the rest of us, as we continue to make our way through our days.

* Zoey in her little bunny ears that came from her friend Gwendolyn.Gwendolyn's mom,Victoria,also sent a beautiful book called "Thisbe's Promise".I love children's books and this one has gorgeous illustrations and more importantly an amazing message.Zoey sat with Taylor so sweetly as she read it to her.You can go here and purchase the book and the proceeds go towards a foundation in honor of Thisbe and her brother Noah who suffered from a motor neuron disorder.My very favorite part of the package was a picture of Gwendolyn in her bunny ears and her darling hand print on a card.Thank you Strong family.We will treasure all of it, always.
*The picture of Joe just cracked me up.He was listening to his ipod,loudly I might add ...and just passed out ... just as you see him.Classic picture I thought.

Random ....

"People are often unreasonable, illogical, and self-centered; Forgive them anyway. If you are kind, People may accuse you of selfish, ulterior motives; Be kind anyway. If you are successful, you will win some false friends and some true enemies; Succeed anyway. If you are honest and frank, People may cheat you; Be honest and frank anyway. What you spend years building, someone could destroy overnight; Build anyway. If you find serenity and happiness, They may be jealous; Be happy anyway. The good you do today, people will often forget tomorrow; Do good anyway. Give the world the best you have, and it may never be enough; Give the world the best you've got anyway. You see, in the final analysis, it is between you and God; It was never between you and them anyway."
Mother Teresa


Absolutely love this from Mother Teresa.I was reminded again of it's beauty, when I came across it hanging in the hallway of the wonderful family who hosted Caitlin and Danny's shower.Seems like such a simple way to live our lives.The complicated part of course, is putting it to action.I know for myself,I fall short ... often.I suppose the important thing is that we continue to try and when we fail ... try again.I think I also will have this printed and hang it in our home.A reminder to myself and my children to pause ever so often,read and reread and adopt this philosophy into our daily lives until these words resonate in deed and action effortlessly.

My mind continues to be mush.Thus a plausible cause to my rather disjointed post tonight.Fatigue is my new best friend.Whatever sleep I do manage,is never enough and truly,the more sleep I get, the more I realize how much more I am really in need of.This weekend I spent a great deal of time missing being able to take off as a family.We have gotten really good at divide and conquer.Good but ... it's getting old.I am anxious for the time when we can all pile into the car and take off.We keep reminding ourselves that,that time is right around the corner.We have come so far.Zoey has taken us so far.Today we headed to to church ... minus Mark and Zoey.Church is one of the main places I miss us all being together.Today our reality was a bit more real.I grow tired of reality.I'd like a break from it and swap it from some good old fashion naivety.The day was still beautiful.Brunch was here.Kids running around like crazy.Boyfriends all in attendance.A candy crazed Easter bunny.Who could have asked for more?Well,I could have but I don't think I would have gotten it.The weather was gorgeous.The company was perfect and we continue to be so aware of how incredibly blessed we are.I basked in the beauty of having all my children together.Said good bye to some of them and revisited the idea of the family compound.I don't think they will go for it though.Enjoy the pictures.Wish there were more of a variety but it seemed that every time I went to take a picture or film,there was a major issue:no batteries,low charge,grumpy uncooperative little darlings.So a few will have to do.But one is just down right darling:Zoey and her buddy Jax.Jax and his family came for a visit on Thursday.They are here on vacation and we were thrilled they found time to stop by.It felt like we were old friends and can I tell you how cute Jax is.Zoey just loved him and literally could not keep her hands off him.Thank you Lacey and Ray for coming.We hope one day before long that you will be near by and our visits will be longer and more frequent.You family is beautiful ... inside and out.Then there is the one of Zoey,sitting on the counter,surrounded by Easter cards.Well,can I tell you that I cried as I read these.They came from a blog friend,Stephanie.Her daughter Sophia asked her teacher if the class could all write cards to Zoey.They did not merely write cards,they spoke from their amazing little hearts.I wish I could read you each and everyone of them.They worked so hard.Most are done with pastels and were painstakingly made,with much love.So to all the children in Sophia Kaczmarzyk's 4th grade class at St.Peter School and to Sophia for organizing this:Zoey sends her love and her great big kisses to each and everyone of you.To the Kaczmarzyk family:thank you for your package for Princess Zoey but most of all for your continued love,support and prayers.We love you right back.I think that is all I can muster.Zoey continues to do her thing.Getting right back into the flow of home.So loving the activity around her.We are breathing deeply,exhaling out slowly and taking in all of our moments at home.Trying to not focus on what is to come but rather what IS .... before us in the here and now.Sorry for the randomness .... sometimes all I can conjure up.Until next time .....

Easter Blessings to you all ...

Good Friday ...

Home ....

23 days.Not bad considering RSV and pneumonia could have sidelined us a whole lot longer.This was our longest stay yet but not by much.Round 4 ... officially over.Hard to believe I must tell you.Time plays that funny trick on you.Seems like Zoey has been fighting this latest battle forever but on the flip side,the time has flown by.Make any sense?Our attending sat with me for awhile before we left.I ended up crying.Poor guy.Probably didn't know what to make of it.Well,actually he seemed to genuinely understand my emotions.Today,I was filled with a bit of fear.Knowing that we were heading home only to return for the 5/6 final rounds.Final round means no more chemo.Final round means Miss Zoey must fly on her own.No safety net of chemo.Sounds strange I know.One would assume we would be more than ready to kiss this thing goodbye and we are but .... scary,uncertain times ahead,really not a whole lot different than where we have already been dwelling though.It's all scary.So,in one moment I was crying and in the next moment I had a bounce to my step as my little love and I headed out the door.Not of course before saying our goodbyes.Another strange component of this journey.My 4E family.Nurses,doctors and the other families that I miss and think of daily.Especially the kids.Each time I come home I feel the overpowering need to call and check in and find out how each of them are doing.Hoping and praying they are finding their way through their days.Zoey is looking and sounding really good.Still a slight cough which is apt to linger for awhile.Not uncommon after what her little lungs have just been through.So we keep a close eye on her.Stay in the confines of home and return for a follow up visit on the 20th.Chances are that her marrow will take just as long to fully recover as the last time.Knowing that,we will probably not access her weekly for draws thank goodness for that.5 weeks was the duration between rounds last time and it will likely be similar again for round 5.This time I will totally and completely cherish the time home.Last time I was so fixated on getting to the next round that I lost moments.Not this time around.The only draw back to treatment delay is that it puts us farther out until Zoey's protocol is complete.We are most likely looking at June as the month when we are finished.I keep saying I and we but really,this is all Zoey.This amazingly courageous little girl who is our light and our life and our inspiration.Tonight,once again,Zoey is home,safe and sound where she belongs and for that we are beyond grateful.God continues to bless us and carry us and remind us daily that life is indeed good.And to all of you,dear family and friends,our heartfelt thanks for loving this precious child of ours.

"Sometimes God calms the storm,Sometimes He lets the storm rage and calms His child."

Day 21.We are tired.All of us.Well,actually,Miss Zoey seems to be faring the best of all.How that is possible ... I have no idea.Her little fighting spirit and her gentle easy going personality,is just magical to watch each and everyday.She is on the brink of leaving pneumonia and RSV in the dust for good.A few breathing treatments late Saturday night and early Sunday morning,made all the difference.Coughing has diminished greatly over the last day or so and it is the consensus of all, that Zoey exceeded every ones expectations on how the latest would play out.Zoey's ANC is 10,which might as well be zero and that is a good thing.It means there is only one way to go and that is up.The question is how long up will take?She is working with a whopping 10 in the immunity department and her whites are 1 as well.That combo can spell big trouble for additional infection so it is my fervent prayer that Zoey flip into total marrow recovery sooner rather than later.Till then our prayers remain constant that she is able to fend off the bad stuff,generate the good stuff and maybe,by weeks end,find her way home.Have got to cut this abruptly short.My mind is mush and my body is beyond exhausted.Thank you to my sweet friend Michelle,for the quote.I do feel an amazing calm as I pass through these days.A beautiful peace that God has given, to sustain me through a long stay, riddled with uncertainties.My anxiousness is often based in my inability to be in two,or in my case,6 places at once.I feel disjointed from my other children's lives and wonder when our new norm will begin.My faith in Zoey and her ability to pass through this latest storm over the last 5 months,has never been in question.My ability however, is an entirely different story.I continue to move forward one day at a time,one moment at a time,one now at a time.Only one way I can navigate this current crisis and that is by living in the now.And this now .... has got to be off to bed.Zoey sends her love and kisses and believe me,there has not been a shortage of those the last week.She is quite the professional with blowing kisses and maybe I will just have to capture in onvideo for you all.Thank you again for the faithful prayers and well wishes.We continue to be humbled and moved by the power and impact of them all.

Another Birthday Girl .....

Jessica Leigh ... forever my baby,my first born,my saving grace.God sent this child to me at just the right time in my life.Our lives.Not the perfect time in some peoples eyes however for me,for Mark,a catalyst for change.And change she did ... both of us.Me,a nudge to grow up and step out from my selfish box of living life with my wants first and foremost.I have often said that Jess saved me from myself.I still believe that to be true.For that, I thank her and thank God.Jessica came blazing into my life on a cool spring Saturday evening,5:25 to be exact.She came into this world so peacefully.And I mean that literally.A wee bit too much spinal anesthesia given to me,found Jess entering this great big world sleeping.Not a peep from her.I wish I were able to post her first pictures from the delivery room so you could see her.Lifted from the womb... sound asleep.She barely opened her eyes for three days.Seriously.People would ask Mark and I what color her eyes were and we would say :Don't know,she' hasn't opened them yet.Peaceful and calm she was and she remains to this day to be,shall I say,the least high strung of us all.People often have a hard time believing this but Jessica never and I might even be bold enough to say ever,threw a fit.Ever.Instead she would bargain and debate and let her opinions be known with words that caught you off guard and made you think:How could a 3 year old possibly be right? But in the end,she usually was.Same holds true today.Jessica is absolute old soul.Always has been.I have a couple of those.It is truly a beautiful thing to see in your child.A wisdom beyond years.A heart full of kindness,loyalty,honesty and goodness.Things that can sometimes take a person a lifetime to evolve into.Not Jess.Jessica is almost exactly the age I was when I had her.Hard to believe, as I was not half the person that she is today at the age of 22.I am proud of Jessica on so many levels.Tangible ways that can be seen from the outside but more importantly inner beauty that can only be seen and fully appreciated if you know the Jessica we know.She is about to graduate from Pepperdine and has pretty much set her mind to going onto nursing school.With her unmatchable debate skills we once figured a career in law was in her future,but we actually think nursing will perfect fit.She has a unique balance of being able to focus on the task at hand,separating her emotions, while at the same time,exuding great compassion and care to others.Jessica's work ethic is unparalleled.She often is busy working two or three jobs.She also mentors and trains for Team in Training, for a cause near and dear to our heart:Leukemia and Lymphoma Society.Always busy and always taking the gifts God has given her and using them to the fullest.Jessica has maintained and nurtured a beautiful relationship with her boyfriend Matt for the last three years and well,I could go on and on but I think you get the idea.I have been blessed with this amazing child.I often feel unworthy for having been given this gift of her in my life and with that being said, not a day goes by that I do not thank God for believing in me at a time when I often did not believe in myself.Happy Birthday oogie-boogie.Today,as you said,was truly a "lovely day" and I love you with all my heart and soul.Ditto for Dad.

Saturday Happenings .....

Exhaustion seems to have the upper hand.Everyone seems to be feeling the effects of a long 4th round.Actually it has only been about a three week stay so far but it feels more like ten.By this time in the previous rounds, we were home already or just about there.RSV and pneumonia bought us some additional time in.If that sounds a bit like a prison sentence ... it kind of is.Isolation is comparable to solitary confinement and for a social butterfly like Zoey,she is missing her people.We do have visits by nurses and other staff members and parents of other patients but everyone must garb up and Zoey is a little leery of anyone masked.Masks and gloves= procedures to Zoey.Who could blame the sweet child with all that she has gone through.Friends from the floor stop by and we will open the door and talk and wave and blow kisses from afar.It will have to do for now and chances are we will remain is isolation for the duration of this round.Speaking of which .... we have no idea how long that may be.Her ANC kicked up in order to fight infection and now that the antibiotic has taken over,Zoey's marrow is doing what it would normally do post chemo.Coming down and making a slow rise in some areas.Platelets are in recovery for sure,we are up from 30 thousand to 104,000,with no transfusion needed this round .. which is great.Last round we got down to under 5 thousand and with no active bleeding she escaped transfusion as well.It's not a big deal,the transfusion I mean but if her body can kick into recovery itself,it's better.She did have a red blood transfusion the other day and brought color back to her and will help in the fight of the latest virus and infection.Zoey continues to fight through this beautifully.Her cough is nasty and last night she had a breathing treatment which seemed to ease her constant need to clear things out.She is battling the pneumonia as well as the RSV and with the two having two different components to them, her little body is fighting in all directions.She is happy and full of smiles,kisses and hugs.She is our Zoey doing her amazing Zoey thing.We feel beyond blessed that she has weathered things the way she has.Infection and virus's on the 4th floor can go any way at any time.Once again we are fully conscious how fortunate we are,Zoey is,to be passing through this latest storm with little or no complications.Blessed and lucky for certain.Today the kids and I head to Santa Barbara .Today is Jessica's 22nd birthday.My baby.Our first born ... 22,surreal.Santa Barbara is beautiful and we could think of no better way to celebrate.Well,if Mark,Zoey and Caitlin were with us then that would be perfect.Jessica rounds out the recent birthday wave around here and the next one will be Mark's in July.God willing,we all will be together to celebrate that one.Keep the prayers coming for our tiny warrior.We are thankful for each and every one of them.

Pneumonia and RSV are no match for this warrior .....

This sweet child of mine continues to astound me with each passing moment.Her fighting spirit,that very same spirit that has seen her conquer countless other seemingly insurmountable obstacles,once again is seeing her through another medical crisis.Anyone who walked into her isolation room today,simply marveled.Her two new diagnosis' hardly matched the smiling,engaging child that sat before them. Well,of course the circles under her eyes and pale skin were somewhat of a give away.She sat so tall and smiled so sweetly and blew gentle kisses and looked at us as if she were saying ...."Is that all you got?"To which I say:DO NOT ASK THAT ZOEY!!!!Zoey's medical resume since birth is extensive enough and I do not know how much more this tired old mom can possibly stand.The long and short of it is this:In a little more than 48 hours Zoey has proven to be in the process of outwitting the current nasty bacterial and viral onslaught to her already compromised tiny body.Completely overcome them ... certainly not.However, they feel fairly confident that she is probably past the worst of it at the moment.Her bone marrow has managed to produce healthy fighting cells ... that has made all the difference.Which is a miracle.We are only 12 days out since round 4 chemo ended and at a time when her counts should be at rock bottom or at the very best in recovery,instead super baby changes things up and her body does what a typical,otherwise healthy child would be doing,fighting off the foe.On the 4th floor, fever,pneumonia,RSV and infection are some of the scariest things a parent can hear.Any of which could absolutely land you in the PICU in a moment.We feel completely blessed.Again.And proud.Again.For two years we have seen Zoey dealt,to some,a most unfair hand.But if we choose to focus on the unfairness than we diminish the life we know as Zoey's.An amazing life.A life that continues to offer opportunities each and every day to see God and His hand in all that happens.Opportunity to listen to the subtle and sometimes not so subtle nudges to see beauty amongst the chaos and uncertainty.We are thankful and ever mindful of how lucky we are.Daily there are reminders of those whose walk is far more difficult and those who's journey has veered off on to dark and frightening paths.Tonight we have two little buddies who are in the PICU,courageously trying to pass through and beyond unexpected scary times.Pablo and Sarah,stay strong and fight on.More to come tomorrow on Miss Zoey.Praying for a restful night for her, as sleep right now is some of the best kind of medicine.Thank you for rallying around us once again and lending prayers of strength and peace for us all.Those prayers sustain and nourish us, as always.

The Pneumonia Update

Heather asked me to post a short note to update all that follow our journey. Zoey is doing amazingly well. Like all other obstacles placed before her, she continues to show us that there is no hurdle too tall to overcome. The doctors started her on a three course antibiotic in the middle of the night last night. They are in place to ward off the bacterial pneumonia and any other yucky bug in her little system.....but there is one small addition to little one's resume.

Heather and I decided to make sure there wasn't any RSV going on, so they did a culture this morning. Yep. You guessed it. Positive. They did a quick check and a longer version to be sent to the lab to see what "grows." They came back to me in less that an hour and said that the quick check was positive, so no need for the full test. Figures. This little monkey has been harboring the RSV and that's what caused the pneumonia to settle in. Man... how I wished the doctors heard us when we asked to check for RSV last week. We probably could have avoided the whole pneumonia thing. Don't get me started!

Heather sat and talked at length with the doctors today and let them know how we felt about her care management from the past week, and especially yesterday. Hopefully, they have learned something from this experience...both in communicating with the family, and understanding that kids with Down syndrome are not your typical patient. We know that Zoey is unique. She does nothing in a typical fashion, and NOBODY knows her like her mother. We tried to tell them, but it wasn't heard. Let's hope they do fom this point forward.

Now it's time to move on. We were shuffled into isolation just down the hall this evening. Our accommodations aren't nearly as nice as the Presidential suite we had been staying in at the CHLA Hotel. It's a shame that this had to be done at all. Thank you all for checking in and keeping the family and our Little Miss in your thoughts and prayers. Please continue to do so. I'm sure Heather will find a minute to update when she is home tomorrow night.

Since I was up most of the night last night, it's time to find my pillow and get a few hours of sleep.