"These Are Days ......

..... you'll remember. Never again and never since, I promise, will the whole world be warm like this. And as you feel it, you'll know it's true, that you are blessed and lucky." These are a few lines from one of my all time favorite songs by Natalie Merchant and the 10,oo0 Maniacs. The past few days, the last week actually, has been nothing short of amazing. Surrounded by my entire family and to have Zoey home, if only for a short time, has been a blessing. Monday we head back to Children's and don't hold me to it but ..... I think we actually may have until Wednesday before she is an inpatient again. Why do I think maybe that is the scenario? Well, here is a phone conversation I had the other day. Verbatim. "Hi, is this a parent of Zoey Needham? Yes it is. This is Children's Hospital of LA confirming your reservation for chemo on Wednesday December the 3rd." SAY WHAT!!!!!! RESERVATION???? Now appointment, I get... but reservation? PLEASE. My response was ..... "I was looking for perhaps maybe a reservation on a plane to Hawaii. Not really chemo." I thought it was a classic line that I won't soon let go of. Much to the dismay of my children. They are completely sick of hearing me repeat the story. But Wednesday it is. Now the question is ..... do I pack swimsuits or dress for cooler weather? Kidding. Monday they will re-access her line, draw blood and see where we are at.If all is well, Round 2 will commence on Wednesday. I actually am anxious to get the next round underway. It is like, hurry up and let's get this thing over with and get on with life. I know the next round may not be as kind on our precious Zoey. I hope it is. Let's pray it is. As for Zoey. Amazing. Strong. Happy. Seemingly healthy. And that is the hard part. She looks and acts so healthy. To think that this nasty disease is anyplace in her body is unfathomable sometimes. We have truly made the most of our time at home. A few more days left. Caitlin headed back today. Jess and Matt tomorrow. Then life begins a new normal on Monday. The ever changing world of new normals. Please continue the abundance of prayers that I know are being sent on Zoey's behalf. What a lucky little girl she is. Yes ...lucky. We all are ...... blessed and lucky.

Zoey and her new hat !!! This darling hat was a gift from Zoey's friend Hannah in Atlanta. Isn't it so cute? Thank you Foy family for the hat and the gift cards ..... we love you guys!

And Zoey hamming it up in her mirror, which she loves to do!

Happy Thanksgiving

"Both abundance and lack exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend... when we choose not to focus on what is missing from our lives but are grateful for the abundance that's present -- love, health, family, friends, work, the joys of nature and personal pursuits that bring us pleasure -- the wasteland of illusion falls away and we experience Heaven on earth."
~Sarah Ban Breathnach

Even and most especially in these moments, that now have defined our lives or have attempted to define Zoey's life,I still find ample opportunity to pause and give thanks.The beauty that surrounds me, in the form of family and friends, is hard to ignore.Although I have yet to come to terms or rather understanding,of all that has occurred in Zoey's young life,it is because of those exact things that I am able to more clearly see all that is still wondrous in my life.The clarity has been often clouded with and shrouded by tears and uncertainty but always the veil is lifted and before me I see miracles and goodness and hope in the form of one small child.This year I have much to be thankful for and gratitude abounds even when partnered with fear.I once again ask that no one feel sorry for us,sad maybe but not sorry and instead feel some measure of envy because we have been given a chance to rejoice in the here and now,acknowledge the future that holds no guarantee and live for right here,right now with the gift of another day together.A very Happy Thanksgiving to you all.May you be surrounded with joy and laughter and those you love.May you take a moment to glance left and right and see those who's struggles far out weigh our own, for it is in doing so that our hearts and minds fully appreciate the goodness of our own days.Peace to you all.

"The only way to live is to accept each minute as an unrepeatable miracle, which is exactly what it is: a miracle and unrepeatable."- Storm Jameson

How do I slow down these days?How do I ensure that I capture all there is within these walls,to sustain me when it is time to head back in and get done whats got to get done?All I can possibly do is take these days for what they are,cherish them,moment by moment and know,it has to be enough.Coming home has been beyond wonderful.Although busy,we have fallen back effortlessly into routine and life together, as if the past month apart never happened.I have missed my bed,my husband, my children.I have missed seeing their faces as they talk and play with Zoey.I have so missed that glint in her eye and the magic of her smile when anyone enters the room.I have missed my family being a complete unit or as complete as it can be when 2 are grown and on their own.But they will be back,Jess tonight and Caitlin tomorrow.I cannot wait for them to see Zoey and she them.Zoey has adapted to being home beautifully.She too has forgotten what the past month has held.A reminder will come soon enough.She seems to be doing well.No fevers ... thank goodness.That would be a one way ticket back in.She is a little pale today.Probably her hemoglobin is a bit low.Other than that she looks great and seems to feel great as well.There are some moments in my day that I have to be jolted back to reality and reminded that she does indeed have Leukemia.Not quite the reality check I like.But our reality ... for now.That's about all I have for you.I am fully and completely embracing and cherishing our moments.And these moments,these days,right now ... are beautiful.

Walking Papers .....

We are home and when I say we, I mean ..... Zoey is home!!! We were given the go ahead to get the heck out of there.I said quick, before they change their minds, lets go.Seriously,I felt as if I was bringing home a newborn.Such joy with an added twist of trepidation.Elated and fearful at the same time.Uncertain but oh so ready to be sprung.If only for a bit.We were given a week.Actually 8 days.We need to begin round 2 on December the 1st.But 8 whole days .... what a gift.And this week ......Thanksgiving.There is truly much to be thankful for.We intend to make the most of these 8 days.The boys and Taylor are out of school.Jess will be home.Caitlin will be home.All of us under the same roof.I smell a Christmas card picture in the making,don't you ?Being home brings a sense of nothing has changed and yet at the same time,everything has changed.We look at Zoey and it is so very difficult to see Leukemia as being part of the child that sits before you.And I mean sits.She literally sat for over 20 minutes.For her to master such a milestone, while under going chemotherapy, is nothing short of miraculous.Zoey, is nothing short of miraculous.The road ahead is long and filled with so many unknowns but we feel so blessed that Round 1 has been kind to our little love.Blessed that Round 1 was no match for a mighty fighter like Zoey.We take Round 1 for what it was.Knowing that the next rounds might not be as kind.I do not intend to envision too far ahead of myself this week.I do not intend to project what may come our way or more importantly, come Zoey's way.I do however intend to cherish our moments these next 8 days and give thanks to God for seeing us through the past 24 days.I have often said at different times in my life, that I do not know how people see themselves through times of great adversity without faith.I have been tested on that theory many times over the last 21 months.And once again my conclusion is the same.You cannot.Or at least, I could not.I cannot fathom walking this road without the unwavering strength of God.His steady hand,His faithful promise to not abandon me, has sustained me in my moments of doubt.And although my deep prayerful times have been limited,dictated by sheer exhaustion,I still have felt the power, in the knowledge that I am not alone.Tonight I sleep with my courageous child beside me.She being a constant reminder of all that is good and forgiving.I am filled with immense gratitude, even with the hand that has been dealt and the journey that still lies ahead.I will rest well tonight.We all will rest well tonight.Especially the princess.Keep praying ..... see what we can accomplish when we do ..... a child sound asleep,at home,in her own bed,right where she belongs.

The Friday Run Down ....

Mark didn't get to the hospital until about 11:45 so that put me home at around 1am.A normal person would have staggered up the stairs and crawled right into bed,probably still clothed.But... no one ever accused me of being normal.Whatever normal is nowadays.So after a quick pick up of the house and a load of laundry started,here I am with a post.First, to Miss Zoey.She was charming as usual.At one point, two very darling nurses came in and told me,rather forced me, to leave the room.Something I haven't done in 23 days.Sure, I go to use the bathroom or run downstairs to grab some food but I never venture far or for too long.This afternoon I popped out and into another mom's room for a bit.She has a little guy,Christopher,who also has Down syndrome and also got more than his fair share of garbage.And now at ten,he is battling ALL.And battling he is.A year after diagnosis and he still spends a great deal of time as an inpatient.It was nice to chat with his mom, as I felt it was another person who understood and felt a lot of the same things that I do.So thank you Laura and Gina.I know Zoey was a TON of trouble for you and you REALLY hated doing it.I also peek in and check on Madison and her mom and dad.They have moved a few doors down from us. Madison's mom Julie, has figured out that I have a major sweet tooth and has been bringing me down goodies.We sit and talk and she feels like an old friend already.As I sit and talk and get to know these other parents, I so wish I could take this all away from them.From all of us.But we continue on ...together ...because we have to.We continue on,for our children,the ones I truly wish I could take this all from.Zoey smiled ..all day.Waved ...all day.Was happy ..all day.Her white count is at 2,which is great,for a kid who has just gone through chemo that is.Her platelets went up to 66 which is an increase of 20 thousand,which is awesome.Her hemoglobin went down a little but not enough to require a transfusion.Her ANC is 40.Extremely low but up 10 from yesterday.So she is still heading in the right direction.Her g-tube site is 75% better.Still not looking perfect but I am sure perfect will not be seen till way after this entire ordeal is done.They have switched her to oral antibiotics from IV ones, so that is also a positive change.So the waiting continues.I arrived home to an amazing little package.My niece Sophie and her Brownie Troop did a community service project and we were their project.How lucky were we.They put together an amazing array of gift cards for us.Starbuck's,Jamba Juice,Cheesecake Factory,Baja,Subway,a Visa card.The list continues.It was simply amazing and more than the gift cards, were the amazing cards that the girls made. Each with a special note and picture.One said "Zoey you are a Rainbow".How cute is that?Each one was so touching and absolutely made my day.Caitlin called today with another piece of fabulous news.She found out that a story or it actually was a post that she did here on this blog,is being published in "Gifts Volume II"!I am proud beyond belief.What an honor and what a testament to the love between two sisters.I guess that does it.I am looking forward to my entire day home tomorrow or rather today as it is after 2am.We once again humbly thank each and everyone of you for your continued support and prayers.I cannot and will not say it enough.Your love carries us through to another day.

"Underneath prayer disappears adversity."Pepper Giardino

Well,Mark didn't leave work until right before 11:00pm so that put me home a little after midnight.So much for a bath ,a little TV and a good nights sleep.I came home and did some things around the house,finished some laundry and now,at 1:05 am I am posting .... quickly.Late this afternoon the therapy dogs came by and usually Zoey isn't really interested in our fine, furried, friends,but today she quite like this little Terrier named Maddie.So I thought I would post a few pictures.They really don't do their visit justice as Zoey was literally trying to lunge out of her chair to get her hands on her.Today was such a long day.I now will only get to see the boys briefly in the morning before I head out again.I can't believe we have been in the hospital 3 weeks already.I lose track of time down there and the weeks have just run into each other.We are hoping that Zoey's numbers will keep on climbing and maybe the boys will be able to come visit over the weekend.I think it's time.Maybe the ideal time too.She hasn't lost any of her hair and she looks so good that I think seeing her will do them a world of good.Well,I have got to get to bed.As you pray for our tiny warrior today will you please keep ALL the warriors that reside on the 4th floor,in there as well.I would love to share with you some of he stories that are played out there daily but I do not want to intrude on the privacy of these families.Suffice it to say that the strength and resiliency,the hope and the faith, along with the fear and the reality,of daily life up there is cause for me to question and at the same time see with such clarity ,the true meaning of living life.I will say though,that Miss Madison had a super hard day.Her little body is so tired from being poked and prodded and put to sleep and woken up and quite frankly, enduring too much for a little girl who is barely four.And her entire family could use a ton of prayers as well.Their journey is going to be long and rough in many moments and the prayers of others will help see them through during their difficult days.I know it has made a tremendous difference in our lives ,especially on those days where we just could not pray for ourselves.So pray hard for all the 4th floor warriors,please.

"Faith makes things possible .... not easy."~ Author Unknown

Ok, I'm better now.... well at least my spirits are better.A huge thank you to everyone, for all your amazing words of support and encouragement,emails and calls.Even during those moments, when I feel so alone,I know I am not.My sweet Taylor,who had every right to stay really ticked off at me,didn't and in fact,made me an amazing cd to listen to and printed out the lyrics to a song by Casting Crowns.She is just a child herself still,trying to find her way through this stuff,just as we all are and I am so proud of her.Anyway,new day and new stuff to report.First,Zoey is doing great.We have finally gotten a handle on her g-tube deal.At least she is not squirming in pain every time we touch it.Her white count has come up to 1.17 and her ANC is 50.So it looks like things are on the rise,which is a good thing.But with it,comes the the fact that her body will "figure out" she has some infection at her g-tube site so by all appearances the site will most likely look worse before it gets better.She will be well covered as far as infection goes,with a heavy duty antibiotic on board and we can be at ease that she shouldn't run into trouble in that area .The great thing is,that throughout this g-tube fiasco,she has not ever had a fever.Which is huge.Her disposition is nothing short of amazing.She continues to wow us all.Our days are filled mainly with just hanging out,her and I.Labs are only drawn early in the morning and besides being hooked up for her antibiotic,we are pretty,well .... bored.We haven't left our room in 3 weeks.Even with a mask,the germs beyond this room,scare the heck out of me.So until her numbers are on a really good rise ... we stay put.There have been so many things,too many in fact,that have been worthy of blogging but for the sake of time I will sum things up a bit.For the most part,all the nurses and doctors are fabulous.I did have to tell the charge nurse that one nurse in particular, was never, not ever to come near my child again.I did have to tell one very cocky and full of himself resident that he needed a major attitude adjustment and it wasn't quite in those laid back terms.I did have to get patient advocacy involved on the air conditioning situation and on another huge issue.Mainly,nobody had me sign a consent form for her very first bone marrow biopsy and they basically took her without talking to me.Far from happy and I made that known.We are not here to make friends and it is our number one priority and responsibility to advocate on behalf of Zoey.With that said,I know already that there are a few nurses that I will and have become close to and will more than likely be in our lives for a long time to come.And unless I am completely missing the mark here,I think they feel the same way.Even with the hushed tones of ... "Watch out for the lunatic mom in 411".Zoey has shaken things up a bit here and there.Last night in fact she decided to get us all moving at 12am until 3 am, with some major portacath issues.Suffice it to say,our neighbor was probably not pleased with the goings on, on the B side of the room.Thankfully, all was taken care of.Much to the relief of the nurses and myself.Our neighbor is no longer darling little Madison.She was moved the other night,at 11pm!!Who does that to a sleeping mommy and child?And the kicker was that housekeeping came up to clean her side of the room at 2am.Much to Mark and Zoey's dismay.The courtesy factor here is much to be desired.Sick kids,stressed out parents and still people come in like gang busters with load voices and rude activity levels.They keep saying how the new hospital in a few years will be so much better.Well,just a heads up ..... we don't ever plan on seeing that building.MAYBE to come back and say hi but God willing,not ever as an inpatient.EVER.We miss Madison but she has popped by to say hi a few times.Keep them in your prayers today please, as she was having her port put in and was having her scan done.Tonight I head home.Not until late though.Mark has to put in a few hours of overtime and can't get here until probably nine or so.The boys are spending the day with our goods friends and they are sure to be spoiled.When all is said and done we will probably be doing a bit of deprogramming of those little guys.It was the same in the NICU days.Everyone took them places,bought them stuff and didn't want to discipline them, so we had to teach them that not every time someone walked in the door, were they taking you some where or bringing you something.Then again,I guess they deserve a little tender loving care as their little lives are just in turmoil and they too are doing the best they can.Well,Zoey is awake.I will once again close with our thanks and gratitude and the request that you keep those prayers coming.It may sometimes sound as if they aren't making a difference but trust me ...they are doing wonders.

The Face of Courage

I wish I could be posting that everything is better.That everything has blown over and that everything was settling into a new, manageable norm.I wish I was posting that this is all one humongous nightmare and we have just woken up to find it all a dream and that life is just as it use to be.But not today folks.That would not be the true and accurate picture of the Needham's reality.Today found me facing the very stark reality of our lives and the lives of those around us as we continue to do battle with cancer.Today found all of my children,in their own ways, trying to live their lives as if nothing has changed when in fact, everything has changed.Today found me once again ticked off at the world.Not just for me.Not just for my family.My children.I am ticked off for others, like Zoey's new roommate.A little sweetheart that I have fallen in love with.A little sweet heart that has found her way into our world by chance or fate.You decide.She is the 4 year old daughter of Taylor's manager at In n Out.Yep,a great big world out there.A huge hospital and beside us,one curtain pull away is Taylor's boss's child.So strange.She won't be our neighbor for long however.I wish I could say she was heading home but unfortunately she has been diagnosed with Neuroblastoma and will head over to 4 West when a bed opens up.Sad state of affairs when ALL the beds are full of children with cancer.Today I wore my "Leukemia Sucks" t-shirt.Do you get the idea how very,very fitting and painfully true I believe that statement is tonight.As for Zoey.Pictures speak for themselves.She is the hero in this often sad tale but at the same time she is the one and only, that keeps smiling,keeps battling and keeps all the negative stuff at bay.She puts us all to shame,especially me, with her courageous coping skills.She leaves me tonight begging God to show me the way.I feel beaten and broken tonight and so uncertain of my ability to see this through with the grace and dignity that Zoey so deserves.Personally,for me,tonight is one of the darkest of the last three weeks.I feel lost,scared and alone.I feel shame,anger and down right despair.But when tomorrow comes,I will,wanting or unwanting,I will,get out of bed,put one foot in front of the other and face the day that lies before me.My disposition will perhaps not prove to be pretty but I will be present in the day.Like it or not.Keep Zoey close at heart and prayer as we have moved to yet another antibiotic for her g-tube site.The 4th one.The big guns have been brought out to ensure that things do not go bad ...quickly.With a white count of 0,things can and are a bit nerve wracking.Not that you would know it by looking at her.She is beauty and light and that should be enough.And on most days it is.Today though,I yearned to bring her outside.To go to the park.To pick up the boys.To spend time as a complete family.To just do those mundane,everyday things.Not happening.Not for awhile.So for now,I pray like crazy and have faith that this too shall pass.Sooner, than later, would be nice but I will settle with eventually.Wish I were filled with a lighthearted tone this evening but I am nothing, if not honest.Brutally often.Tonight thank you for tolerating the rant ......or breakdown,hard to say which one it was.But ..thank you nonetheless.Oh and some extra prayers for little Madison.Our roommate.Tough week they are about to embark on.They could sure use some extra prayers coming their way.

"Hope is faith holding out its hand in the dark." ~George Iles

I was planning to inundate you all with pictures of Zoey but since Saturday is my full day at home,the camera remained with Mark at the hospital.Tomorrow maybe I will skip a post and just bombard you with photos.Each time I spoke to Mark today,I would say:"How's she doing?", his response, always the same:"She's great".He said she was full of energy,thanks to that fresh transfusion yesterday.Happy and full of kisses and giggles and waves for everyone.Zoey seems to be the hit of 4 East.Nurses love snatching her up when they clock in for their day.The doctors seem enamored with her as well.Even the ladies who pop in to sweep and empty the trash,stay for a bit to bask in the wonder of Miss Zoey.We had an old friend come by today and she commented that she knows what she's seen on the blog updates but she was still surprised to see this little love looking and feeling so great.Zoey just has this magic about her and you just cannot help but be captivated.As far as her numbers go.Her counts are of course the same:zero.Who knows when we will see those pick up.Her platelets are at 22.Now, normal is 150-around 250 so obviously hers are LOW.Protocol is,in the absence of any bleeding,no transfusion until she hits 5.Kind of scary but they,meaning the doctors,know their stuff.They have also switched her antibiotic again.3rd time has got to be the charm.This one is a broader range antibiotic that covers infections of the skin better.Her g-tube site looked about the same Mark said.No better,no worse so maybe it will take a turn for the better over the next few days.I missed her today.I did better being away from her today then the past two Saturdays.Still,I had this inexplicable feeling, in certain moments, that she was here but I suppose that is normal.Speaking of normal.Our new normal isn't exactly falling into place smoothly.A groove hasn't been found.More like a pattern.Some consistency to schedules thanks to wonderful family and friends that have stepped up and are so unselfishly giving to us their time and most especially to the boys,their love.Joe, my poor little guy, has some issues going on to say the least.So apparent today.I emailed his pediatrician today and hopefully a meeting of the minds may yield some answers on how best to help him.For a child who has behavior issues,namely ADHD and defiance stuff,life altering events like this, do not bode well.As for me,my stress,knowingly or unknowingly,limits my ability to be as patient and understanding.Honestly,I felt like an utter and complete failure.He was so out of control in some moments today that I was at a loss as how to parent him best or at all really.Seriously,I spoke out load, that I wondered just how far God was trying to push me to the edge before I lost it.Jake becomes the innocent bystander while Joe and I go at it.We sat and watched a movie tonight.Towards the end Joe said,out of the blue, "I am sorry I can't behave,I can't help it,I try,it's just so hard.I don't do it on purpose." Well ...that was all it took for me to go completely over.This little child is in such turmoil inside.He went on to say he missed his baby sister and asked "How many more medicines she has to get till she comes home?" He was crying.I was crying and Jake was crying.I paused the movie, we talked and it became more and more evident that we are all in crisis.I told the boys we have to be strong and brave and pray that Zoey gets better and can get home to us for awhile.I can't tell them the one thing I yearn the most to say and that is ,that everything will be okay.I can't promise them that because I do not know what the future holds .We have no guarantees that this will play out the way we all hope and pray it will.Those thoughts become unimaginable and therefore I do not and will not dwell there long.I have no way of sheltering any of my children from a far deeper sadness and tonight, I saw with clarity, my inability to protect them from the reality of cancer.What a day.What a night.No mommy of the year award for me tonight.Quite possibly Child Protective Services may come knocking.Yes, tomorrow is a new day.The boys want so very badly to see Zoey but they still have remnants of colds that they started last week.Bad timing.They need to see her and she needs to stay germ free.Pictures aren't cutting it for them so hopefully before long we can get them down there to see her.I head back early tomorrow morning.Mark will be home to do damage control on my behalf.My sister Shannon is coming down to keep Zoey and I company tomorrow.Hard to believe Wednesday will be our 3 week mark.A lifetime crammed into such a short time span.My prayers can only be that time continues to pass relatively quickly,that my tiny fighter continues to do battle as courageously and effortlessly as it appears she has been.That our family will continue to rely on the support of those that surround us and that we look to God to carry us in our weary moments.My expectations of myself have been totally unrealistic.I have got to give up the supermom complex that I often waltz through this life with and let go and allow things to flow as they are meant to flow.I so wish I could wave my magic wand or click my ruby slippers and return us to a simpler time.One that found us,a family of 8, just wading through this life,doing this life we have been blessed with, justice. A time that mirrored similar characteristics of the one we find ourselves living today,the common thread a resilient little girl,who asked for none of this but has been far more forgiving then the rest of us.I love you Zoey.My sweet,sweet child.I go because you go and so it continues.We battle forward ..... together.

"If we are facing in the right direction,all we have to do is keep on walking"Buddhist saying

Sorry that it has taken me so long to post an update on Miss Zoey.We finally have internet access in the room but I haven't had the computer with me the last few days.The computer that can be used by the 4th floor,yes,one computer for the entire floor, seemed to be occupied each time I passed by the room today. I had to wait until I was home tonight but once again I am so tired.My eyes were extremely heavy driving home tonight.That scary kind of heavy that it seems that they will for sure not stay open before you hit your end destination.Next week I will have a computer with me and in my down time during the day it will be so much easier to post.I have so many things that happen throughout the day that are worth sharing but at days end exhaustion takes over.Tonight another quickie.The news of the day is that Zoey has zero blasts.Great news,to say the least.I was nervous that Round Two would happen before her body had a chance to recover.I know she would have been fine but there were increased risks and that would have kept me on edge for sure.Now her counts can come up and her g-tube can heal and maybe we will even get a chance to come home in between rounds.That would be great,for everyone.We all are beyond exhausted.Joe is probably the one that is showing the stress the most.In fact he just woke up with a nightmare ..again.Second time this week.Poor baby.His mind is so full of stuff.Zoey was more lively today, thanks to a red blood transfusion.I took pictures of the little darling over the last few days but in the rush to get home I left the camera at the hospital.Tomorrow I will catch up with photos and a few stories I wanted to share with you but for now,I have got to call it a night.For now, I head to bed thankful that Zoey weathered the day so well and immensely thankful that her numbers will be given a chance to kick back to normal.For now I take a deep breath and go to bed wishing we all were asleep under the same roof but knowing,until then,if we can follow Zoey's lead and remain strong,we will see ourselves through this.Thanks for those prayers.They did the trick.

This is going to be a very quick update.I am on a rampage here at Children's.I have been trying for 3 hours to get the air conditioning turned down in Zoey's room.Her nose is even cold.Engineering is dragging their feet and I am about to lose my mind.Zoey's ANC has finally hit zero.And her white count is.6.Finally we have bottomed out.Tomorrow at 8:15 she will be having her bone marrow biopsy.Within two hours of that we will find out what the next step will be.Please focus your prayers on NO BLASTS!!!! Which means that there are no immature cells circulating in her little body.If there are blasts, they will not wait for her counts to rebound and they will begin Round 2.We really want Zoey's body to have an opportunity to recover before her next treatment begins.Starting Round 2 at this point would leave her even more susceptible to infection.As it is, they have her on an IV antibiotic due to her g-tube infection.Her poor belly is so red and so very tender.Today she was a little less smiley.Not quite my happy little love.Made me sad.She is sleeping peacefully now and with any luck will have a quiet and restful nights sleep.Big day tomorrow for Miss Zoey and she needs all the prayers she can get.Once again a huge thank you for all your love and support.

"Toughness is in the soul and spirit,not the muscles."Alex Karras

Fatigue wins.Tonight I am absolutely exhausted.My turn at home and by the time I have done all that needs to be done,which is a ton,I have no reserve left.Morning arrives before I know it and I think that I sleep so hard in my own bed,that when I wake ,I don't remember dreaming.I actually cannot remember one dream that I have had over the course of the last two weeks.Miss Zoey was tired as well today.She did not nap yesterday and didn't give into sleep until ten o'clock last night so I think her tiny body was paying the price today.She still was full of smiles and kisses but her eyes were so heavy most of the day.Her g-tube has really taken a turn for the worse today.They decided to put her on Keflex,an antibiotic,for 10 days to be on the safe side.It is red and inflamed and very tender.She winces every time I have to fiddle a bit with it.Hopefully we will see some improvement over the next few days.Zoey also needed a platelet transfusion.Again, not because of super low numbers,hers are at 40,000,but mainly to keep her above 50,000 for her bone marrow biopsy on Friday.Speaking of which,I continue to be a bit uneasy about the unknowns associated with the procedure.I so hope that her blasts will be zero but I will have to mentally prepare myself if it turns out any less than what I hope.I just want her body to have a chance to recover adequately before Round Two.The doctor assured me that if blasts were present that it would be,in no way,an indication as to the ability to treat her Leukemia.Just an indicator of having to kick it up a notch to be certain we are on the right track.But no matter their words of encouragement,I still am kinda freaking out.Just a bit.Zoey's little roommate headed home.Sweet thing.I will miss her precious face,her tiny voice and her momma who tried to often no avail,to calm her fears and anxious heart.So much to carry for such a young life.Christopher went home as well.I told his mom I hoped I wouldn't see them again.She looked at me with this look and said "Well,you know we probably will be back."Christophers road has been long and far too difficult as well.And, unfortunately,a beautiful four year old has now become our new roommate.Another child and family filled with fear and uncertainty.That's the thing around here,the beds never stay empty for too long.Makes me so angry.And sad.I find myself doing these deep sighs every time I leave or enter the 4th floor.I feel this twinge and tingle go up my spine each time I walk on the elevator and ask someone which button they need me to press ..... and they often say 4.Nothing needs to be said after that.I called Mark within minutes of leaving the hospital and asked him if he knew how very much I hated Children's Hospital.The fact that I know the in's and outs of the place is something I really did not want to put in my knowledge base.But once again we are settling in to a new groove,our new normal and I know we can do this.I am angry we have to but I know we can do this.My confidence to wade through the crap continues to grow and that fact definitely scares the heck out of me.You know what happens when this family finds their comfy place don't you ?Life usually decides to turn it up a notch just to keep us on our toes.Tonight I pray for peace and strength.For Zoey,for me,for all of us.Peace to all of you as well and our sincere thanks as well for your faithful support and prayers as our journey,Zoey's journey continues.

*As I mentioned,Zoey has been fighting sleep during the day.It doesn't help that there is constant commotion in her room.Vital signs,meds,transfusions,feeds.You name it and they cram it in.She finally gave in to a short nap this afternoon.I couldn't resist this picture.She looked so peaceful.For that, we are thrilled.

The waiting game ....

Not much to report.The day has been fairly uneventful.Zoey was in such a great mood all day but then again,what else is new.She had a few visitors from her NICU days and she wowed them all.She waved and charmed them and did her thing.Everyone feels so absolutely bad for us,especially her and I find myself having to reassure them!She also had a visit from our friend Christi,who is also Zoey's vision therapist.We had a wonderful visit and a huge thank you to Christi for keeping me company and helping me pass the time.The days seem to go relatively fast though.I cherish this time spent with my littlest love.I know that may sound strange to some and yes I would like to be passing the time with her at the park instead but here we are and I am making the most of this one on one time with her.We really just play and snuggle and read and snuggle some more.She is so magical to me and just doing simple things like changing her diaper gives opportunity to connect with her and just look at each other and remind myself what a blessing she is to me and all of our lives.Friday they will be doing another bone marrow biopsy.Protocol is to check on things 14 days in.If there a zero blasts,immature cells,then we continue to wait for her numbers to rise.If immature cells are found then we jump to Round Two.PLEASE pray for zero blasts.We really want her numbers to recover a bit,head home for a week and then come back for the next round.So pray hard all my faithful friends.I am off to bed or rather bench and then another day ...for that I am grateful for.

"When it is Dark Enough, You Can See the Stars"Ralph Waldo Emerson

Tonight I arrived home to find Joe already asleep.He was a holy terror for Taylor this evening.As per Taylor's description. I think she slipped him his Melatonin a bit early.Who could blame the poor girl?She has been doing the mommy and daddy role solo, most every day.Have I mentioned how proud I am of her?I mean really,really proud of her.Today was especially difficult for her.Both boys have come down with colds.I know,great.I have a child with a white count of 1 and an ANC of 90 and colds are circulating around the house.Maybe it's a good thing I spend most of my time at the hospital.Maybe I will miss it.Hopefully.All the more reason to start eating better and trying to rest when I can.Much easier said than done.But tomorrow I plan on loading up on the vitamin C,just in case.So from the numbers you can see that she STILL has not zeroed out.Who would have thought I would be wishing for my child's immunity protection to be completely wiped out?But it is a necessary evil.It's the only way she can then turn around and head in the right direction and then,maybe we can head home for a week before Round 2.Zoey,as you can see from the pictures,had another fabulous day.They took her off IV fluids so that makes her tube free.Which is great.Do you see something else interesting about the pictures?Look close ..... that's my girl ..... sitting ..... alone ...unsupported ..... by herself.Granted,she was not up for long,maybe a few minutes but hey at least she's up.She hasn't been this close to sitting since right before seizures, which was in January.How is that for resiliency?I mean seriously,the child was just diagnosed with Leukemia,she just finished her 1st Round meds. and now is when she decides to sit.Amazing,simply amazing.Today I briefly met a couple of Zoey's "friends" on the floor.First there was Faith.Faith is 3 years old and has ALL.Just diagnosed and they sent her home but have her heading back on Wednesday to begin treatment.Hardly seems fair to be sent home only to have to basically turn around and be readmitted.Kind of a tease.The other child I met was Christopher.Christopher is 10 and oh I could just squeeze him.So cute.He also has ALL,like Faith but has been in patient for a long time.So sweet these kids and because of their little extra something,something I just want to grab them and love on them.Who knows,maybe one day.Well,that's about all.I am going to settle in and head to bed.Novel concept considering it is only 11:30.Early for me.Keep those prayers coming .... look at Zoey,you can tell she feels them.For that we are humbled and most especially grateful .... as always.

These aren't very clear of the little Princess.I forgot my camera in the rush to get out of the house this morning.Mark was able to upload these from our phones.Quality is a bit to be desired but at least you get the idea ..... Zoey remains her happy self.Although today when I arrived she was a little pale and her energy level was slightly off.When they drew labs we found her hemoglobin was fairly low and it was decided she was in need of some fresh red cells.Four hours later,pink returned to her cheeks and she was off and running.Well,not literally but you know what I mean.Today was an uneventful day.My spirits took a hit over the last few days,as noted by a few of my discerning children.Taylor feels perhaps I should snap out of the current state I have found myself in and perhaps she is right.She reminded me that Zoey has been smiling throughout all of her days here and I suppose I should take her lead.Taylor is probably right.Although better said than done, as I pass my days in the confines of these halls.But Taylor,I promise to make a better effort today.The report is much the same here.White count a solid 1 and ANC 130.She is hovering at the zero mark.I will be so thrilled when she hits the upswing but when that will be is any one's guess.Today I had the pleasure of chatting with the very sweet grandparents of a little guy from our town.Our church in fact.His name is Thomas and he is surrounded by the most incredible support system.The hall was filled with laughter,as his cousins and brother were busy doing what kids should be doing .... being joyful ,carefree kids.Thomas is 8 and he has called Children's his home since July.His family and his story are inspirations and I have been honored to spent,if only brief moments, with his mom and family.His family remains prayerful,hopeful and unwavering that Thomas will be healed and before long he will be joining his cousins and siblings in their pranks and wide eyed wonder approach to life.In fact he will be leading the pack.Thomas and his type of cancer is irrelevant here.As we pass parents,grandparents and loved ones daily in the halls,the only thing you need to know is that some child is doing battle behind the closed doors.Some family is trying to stay strong and positive amidst such fear and uncertainty.It is not easy.For some it is unbearable but each day I see not only the resiliency of these children but of their families as well.Once again I am surrounded by inspirations,Stories slightly different in content but stories that will leave me changed when our time here on the 4th floor is done.A new peer group.A new set of people to lean on.How I wish it were not in these circumstances but as life has proven time and time again,it doesn't always play out the way you wish.So you take what it does hand out and you do the very best you can and you pray like crazy that you will all come out the other side.That is all for now.3:30 am and I am going to try and catch a few more hours of sleep.Thank you once again for all the kind words,the support in the form of phone calls and emails.I know it is never easy for most of you, to know exactly what to say and do but we have to tell you ...that's okay.Just knowing you are out there makes all the difference.

"I shall persevere in spite of everything,and find my own way through it all,and swallow my tears."Anne Frank

The house is eerily quiet.Jess has headed home.Taylor is at work.I turned on the TV for company.The boys are settled into bed after books.Calming effect on us all.I,dozing in mid-sentence as exhaustion hits, the moment my body comes to rest.In addition to a few books of their choosing,we are reading "A Cricket in Times Square".I love that book.One chapter a night and we are almost done.The stillness of the night is a stark contrast to the events of the day.The stress that has permeated the house is palpable.I began the day with expectations.First mistake.I figured I would be so thrilled to be home that I would surely make the most of my short time here.Instead I teetered on the edge of full on panic attacks all day.My children,once again did not get the best of me.Mark and I decided,well actually Mark decided,I should spent one more night at home.Reluctantly,I agreed.I will head down first thing in the morning for Mark to get back in time to take Jake to CCD class before church.They will go to church at 11am and then Mark plans on taking them bowling and filling the day with some much needed distraction.Something I failed miserably at today.I sit here with guilt once again that I have failed my children in one way or another.Especially the little guys.Joe sobbed when I put him to bed.He begged me to stay home another day.His behavior,as witnessed by Jess and Taylor also,is the worse it has been in months.We all,him especially,have worked so very hard at keeping his temper and behavioral issues at bay and well,it's all back, with a vengeance.Jake is a stress case too.Thinking he is hiding it but absolutely transparent to me.Once again I found myself repeating,to the boys, something from Zoey's NICU days, which was"It's not forever".It was deja vu.And not in a good way.My patience was less then in check today.I lost sight in some moments, that these are little guys who's life has been turned upside down.How do I make this better?How do I pave the way as not to leave wreckage along the way?These boys deserve more.My older girls deserve more.Zoey most especially, deserves so much more.Do I feel we are entitled?Maybe.Dues paid ...... I think so.Have I left unrepairable scares?Sometimes I think so.I made apologies all day long.Bedtime has always been our time to make amends.Children are so forgiving.Often more so than we are on ourselves.Being home,without Zoey,is beyond difficult.Even knowing Mark is with her.I have been blessed to have been able to be at with my children all of their lives,everyday.Being away from them has always left me with a feeling of missing something,a part of my very self.With Zoey,that feeling is magnified exponentially.I feel a literal ache in her absence.When I am at the hospital with her it is much easier to shut off the world back at home but when reversed I cannot resist the urge to not drive back down there and be with her.Hold her.Kiss her.Be still with her.How do I stretch myself in so many directions and still give to all, what they need?I can't.I can try but in the end,I can't.So once again I am forced to accept that which I cannot change.Surrender once again.Today Zoey continued her streak of amazing days.Mark said she was playful,smiling and she ate ...really well.We are beyond thankful that our prayers have been answered and Zoey has weathered this last week in such true Zoey form.We stand in awe of her grace under pressure.Her numbers are down but not quite zero.We are anxious for her ANC to hit zero and then we would know we would be on the upswing before long and possibly be sprung for a week or so before Round Two.Today has been an emotionally difficult day.I let my kids down today.I let myself down today.I quite frankly believe I let God down today.Yes,tomorrow is a new day.But what will it bring?Try as I might,I start off positive,ready to take on the world but somehow, sometimes, that all slips as the day progresses.As reality pays me a visit.A sometimes gentle but often an in your face reminder, that we are all a family living,or at least trying to live,in the wake of an unwelcome visit from cancer.How is it that Zoey seems to be fairing the best.Is it because she dwells in this constant state of grace?I think so.We thank God for seeing her through this past week.For easing her way and strengthening her body for what ever lies ahead.In the end, she comes first right now.All of us have the same end goal.To bring Zoey home healthier and stronger than ever before.Remaining strong and united as a family may prove to be just as big of a challenge.We remain faithful and hopeful that we will all emerge as unscathed as possible.Especially Miss Zoey.Pray for our tiny fighter.

"Everything is possible ...the impossible just takes a little longer"

This quote is so dear to me.I found it on blog at yet another time in our life with Zoey,when we were so uncertain as to what the future would hold.The story of this precious boy I found one dark February evening,changed me,forever.His life,renewed my hope.This quote became our adopted mantra and when we celebrated her birthday the very next month,we printed up this quote,had them framed and put them on all the tables at her party.The quote fit her life and the course it had taken up until that day and today we find ,once again that this quote defines Zoey and her journey over the last 20 months.I have placed one of the framed quotes at the top of her hospital bed and I look at it throughout the day, to remind me of the strength and resiliency of this child and what she is capable of.Once again, today found most of us in a state of flux.The boys struggled ..... a lot.Anger,defiance,crying ...you name it,they did it.Not unusual for Joe but for Jake, this is so uncharacteristic.As we settle into our new norm,they hopefully will find their way a bit easier.We all are giving 110% of ourselves to one another and still,somehow,fall short.My expectations are far to high for 9 days into this life altering event.Since I have absolutely no control on the course this "thing" will take with Zoey,I find myself trying to control things within my grasp, schedules,house stuff,events but even at that, I feel like I am failing.Every aspect of this latest leg of our journey, seems totally and completely frustrating.However,my frustration is short lived, as today was another outstanding day for Miss Zoey .Strange to classify a day in the hospital, fighting Leukemia,outstanding but I gotta call it like it was.She even ate some baby food today,which is a first since treatment began.Her g-tube site is a bit irritated,which is unusual for her.Her site,up until now, has always looked stellar.Since chemo can break down skin,thus the frequent diaper changing,it would make sense that her g-tube site might feel the effects.We are trying to stay ahead of problems and are religiously washing,drying and applying ointment to it, to prevent infection.We are watching a little cough as well.I think it is from the post nasal thing she has going on and her lungs continue to sound clear to everyone.Thank goodness for that.Her counts are doing their thing as well and we are just shy of zeroing out on her ANC level.Slow and steady everything goes.She is simply magical these days.She is also in the company of some amazing children on the 4th floor.I found out today that there are 6 other children who have Down syndrome,fighting Leukemia, right along side her.The oldest is 15 and Zoey is the youngest.Tonight as I write,Jessica is making a poster for her Team in Trainging.Little Zoey's picture is plastered across it.This time around,Zoey becomes their personal inspiration.The LA marathon is in February.Zoey will not be able to be at the finish line as Jess crosses on that day.Hopefully and prayerfully she will be close to finishing up her treatment.Mark and I will switch places tomorrow.I will try to make the most of my time with the kids before I head back.The day is sure to go way too fast.I continue to miss Zoey each time I come home.Certain in some moments she is here with me.In my heart,for sure.Today as I was riding the elevator up from buying some hot chocolate down stairs,a mom and her little guy came onto the elevator.He happened to also have Down syndrome.He was darling.His mom told me he was 7.They were there visiting friends on a different floor,thankfully.I said good bye as they got off.I wasn't sure if he heard me but just as the doors were beginning to close he turned to me,waved and said good bye,cute as could be.As I got to our floor,I stepped off and began to sob.I want to know I will see Zoey, just as that boy was .... 7 years old, smiling and happy.We all embraced Zoey,as she was forming within me,before she was born we too knew her.I never, ever felt robbed of what I was SUPPOSE to have because Zoey was is just what we all were always suppose to have.We have embraced and rejoiced in her being from day one.Never yearning for anything other than what you too, see before you.We could not and do not relate to the devastation that families feel when they received their diagnosis of Down syndrome.I do not mean to diminish those feelings of others,it just was not us.Haven't we done it all as we should have?We chose life,we chose Zoey.Why then does it seem as if we are being punished by the prospect of possibly losing her?My whole life, I will never understand how it is, that one small soul should have to prove herself time and again.Hope remains but is sometimes tempered by fear.Fear never winning but always present.Pray for this brave little love.Pray that she continues to show us once again, that she is the absolute wonder,she epitomizes courage and she has more than earned her right to be here amongst us.Just my opinion.A mother biased.A mother in love, with a little girl, that truly and fully completes us all.

Early Friday morning and I was unable to get to the computer yesterday.Each time I passed by, it was being used.Today we are going to once again try and get someone up to check on the wireless in our room.What a difference that would make when it comes to keeping in touch with everyone.Six work orders have been put in so far and still,nothing.So frustrating.Zoey had another really great day.She had a PT session and was full of energy and spunk.It is so strange.Mark and I have both noticed an INCREASED energy level since she started treatment.I have no idea what to attribute it to but it is actually such a relief to see her so engaged and wanting to interact and play and definitely flirt with one and all who comes into her room.Her ANC level was 190 yesterday so ...today may be the day that zeros out.White count is 1.2 and platelets dropped 30 thousand.They are at 44.However,they ended up transfusing her because they have found that her port, that administers chemo,iv fluids,and draws blood,will heal better if we keep her above 50 thousand.Her hemoglobin remains at a level where she can put off a red blood transfusion for a bit longer.Once again the day was uneventful and we are so blessed that another day is under her belt with nothing out of the ordinary popping up.As for the rest of us ...yesterday was a tough day for us.Some more than others.Me especially.That grace state kind of went out the window.I found myself angry to be here.Angry to not be able to be doing what once seemed mundane tasks.Angry to not be home for the rest of my children and for them to not have Zoey and I home with them.I tried to push down those feelings but found I was better off to acknowledge them and move on.I am not sure I have exactly moved on but I am at least trying.Well,I better head back to the little love.Morning around here will begin before long.Mark will be here tonight.Jess will be coming home and I will stay home until Saturday night.The balancing act continues.The scheduling of the boys,who watches them and where they need to be,continues to be a challenge.But with any luck we will be settling into a groove next week.Thank you again for all the prayers of support.Thank you for loving us and our family and most especially Zoey.Hopefully my feelings will circle back to that happy place today ..... I sure hope so.

grace:elegance or beauty of form,manner or motion

I wish I could say there were an overpowering emotion that charted the course of my days but the truth of the matter is, that my emotions seem,well,somewhat none existent.I believe by necessity, my days just go in a weird self driven manner.The days go because they have to and I go because I must do the same.Make sense?If it does,good because I don't think I understand it myself.Some would say I am being propelled by adrenaline.Survival mode.Some would say it is denial, motivated by self protection.Some may say it is just good old fashion shock.Me,tonight,I think I choose to believe it is grace that is sustaining me.Some may say I may be in for a rude awaking one of these days and quite frankly,they are probably right.Don't get me wrong,I often think my days are spent walking in the foot steps of some other persons life.I cross the threshold of the 4th floor elevator doors and cannot believe my child has cancer.The big "C" word.The, no not me, that must be someone else's sad chapter of their life but most certainly not my life.But no,this is my life,my 20 month old baby daughters life.Yet another unbelievable but undeniable diagnosis.My true feeling can be summed up in a shirt that my dear friend Tera sent me.I plan on getting a few more.It is so me and is so appropriate.And, sorry mom, if you are reading this,I know you have always hated this word but the t shirt I will be wearing tomorrow reads "Leukemia Sucks"...... I like it,short but sweet and straight to the point.So, you see, if I am left with my thoughts, this seemingly unemotional state is actually riddled with myriad of inexplicable feelings.I am certain that this is part of the process,part of the journey.Can I just say that this latest lesson,if that is what it's called,is one that I am not enjoying much.No one on that floor is.Especially the precious children.All of them so deserving to be far, far away from the place that they have found themselves.Today I am thankful that my heart has allowed grace to penetrate it's slightly hardened exterior.This grace that moves me and fills me,this grace that allows me to function and get out of bed each and every day, is a gift given by one who exemplifies the meaning of the word.Miss Zoey GRACE is my teacher and although I find myself apologizing to her for having to be labled with such an enormous title,I am so blessed to have been chosen to be her mother.I reap the rewards of that role daily and I intend to not let her down ..ever.So today it's grace.Tomorrow, well,I can't promise you it will be as pretty but I can promise you for it to be just as authentic.As for the little patient.Doing her thing.Happy and still smiling.Her numbers are scary low today.White count 1.1 and her ANC is 240.Half of yesterday and tomorrow probably will be zero as I suspected.The doctors are pleased as her counts are doing exactly what they should be.Blasts,which measures immature blood cells,are at 0 and platelets and red counts are down as well.Zoey is text book in the protocol thus far and our prayers are that this trend continues.It has to continue.And the home front ...... burn out is happening already.Joe didn't want to go to school so my friend who was watching him just let him hang out.Taylor is maxed out.She is trying to be mom and trying to remain a 17 year old.She is doing a phenomenal job.Above and beyond.But she is tired.We have a slightly tentative schedule for the up coming weeks so hopefully the kids and all the people who have so generously and selflessly stepped up to help,can have some type of constant.I am tired,Mark is exhausted.The other girls worry from a far but check in daily.We wish we could all be home together.No such luck.I am off to finish laundry and get a jump on lunches tomorrow.All is quiet.Just me and my thoughts.Not always a good choice but tonight fatigue may win.Once again a very humble thank you: to all of you who come and lend your support here with comments and prayers.To all of you that do not comment but come to check on our little princess.For the countless emails and phone calls.To Maureen who stopped by tonight with a very generous gift of gas cards from your mom's group.Please give your group a HUGE thank you from us all.What a nice way to end my day.To our family and friends,new and old,near and far,thank you,thank you.We have a long road ahead and your support eases the travel.We could never,ever reiterate that enough.Keep all the prayers and good vibes coming.Remember,"it takes a village" and this village that surrounds us surrounds Zoey, amazes and astounds us.So don't stop ..... okay?

Our Tiny Warrior ....

We have no wireless in Zoey's room so I have to quickly sneak away and use the only computer on the floor when it is available.It's a little after 11:00pm and the computer is finally free.I don't like being away long so I will make this short.She is asleep and she is liable to stay that way but I hate taking the chance of her waking and not being there.Also,I am due to change her diaper at 11:30.We change her every hour and a half as not to leave her long in any wetness at all.These drugs can and often will cause sores and the best precaution you can take is frequent changes and lathering her in Desitin.So far,so good.We set our alarm for the changes and I hope that it has prevented this potentially very uncomfortable side effect.At exactly 2:35 pm Zoey finished her first round of chemo medication.Round 1 still has a way to go but the medication part is complete.Like I had said yesterday,now is the wait and see side of things.Her ANC which measures her immunity capabilities is down to 450 so by tomorrow she will most likely be at zero.If not tomorrow then definitely by the next day.The rest of her numbers are in decline as well and we will see when and if transfusions are on the horizon.Platelets can go down to 10,ooo and she is at 80,before they will transfuse so there is the strong possibility that she will not need that.However,hemoglobin is one she will most likely need and quite frankly a fresh batch will give her some spunk when the time comes.The next two weeks will be interesting and informative and hopefully uneventful.Our fingers remain crossed that we can keep her infection free.Our room is stocked with Lysol wipes and extra hand sanitizer and well,let's say we are doing everything humanly possible to safe guard her.In the end,sometimes no matter what you do,you can't prevent something from slipping by.Let's just pray for nothing but in the event we see something,that it is minor.Our day goes by relatively quickly believe it or not.We play and read and eat and snuggle mostly and she well,she just smiles and waves.I feel like I am in the honeymoon period or something.Waiting for the big "thing" to happen but thus far ... nothing.Everyone else seems to be managing well.I am once again so proud of all of my children.They are resilient and adapt to our ever changing norm sometimes better than I.I head home tomorrow night and I will post a few picture of the princess.As surreal as it is to be here,I am not truly surprise by the grace by which this child is handling this latest battle.I am realistic to know that not every round will be like this and things can and probably will change and not always for the good but for today,once again in this moment,I am able to take it for what it is and not project too far forward.Zoey has once again taught me the lesson of rolling with the punches and as much as those punches have left me breathless, I am able to get back up and stand, preparing the best I can, for another sucker punch, that might very well come my way.I find myself hovering over Zoey a great deal,just praying for her strength and tolerance for what ever may come her way as well.The Needham's are handling this latest, following the example of the youngest member of the clan.Courageous determination is in her genetic make up as well as that extra something,something God decided to bless her with.Her battle continues .... and so do our prayers.

Trying to get into a new groove .....

Has it only been a week? It feels like a lifetime. Time has taken on a whole new meaning for me. Time now has become a waiting game. Specifically, waiting on Zoey's blood counts. They continue on a downward spiral. Downward spiral in this case, not being a bad thing. Chemo kills the good as well as the bad. Today Zoey's white count was 1.2. Yes folks, by tomorrow Zoey will have just about nothing in her tiny body to help fight infection. Lovely. I have now become more of a germaphobic than before. Is that even possible? I have to say that my biggest fear right now is that Zoey will not be able to fend off yucky stuff before her counts climb back up. Last night I noticed she has a weird cough when she first falls asleep. Only then. Seems like a post nasal drip type thing. Like maybe a cold already. Let us pray that this not the case. Less then 24 hours and her first chemo treatment will be complete. I still have a difficult time writing that. Chemo. The word itself is ugly. The diseases it treats far worse. The 4th floor is a sad place. Doors closed. Protecting fragile bodies from what lies beyond them. Families sitting in a room. Left with their thoughts and feelings. All of us trying, in our own way to figure out how in the world we got there. Focusing on our children. Praying for miracles. Not only for our own but for all these innocent children suffering in ways no one should. Zoey's roommate is a tiny, frail girl named Frieda. She is five and she is terrified each and every time someone enters the room. She screams out, "No Momma, No momma" ...... every time. She absolutely breaks our hearts. Today, when the doctors were in, they had an interpreter and basically, this five year old asked the doctors, herself, what was going to become of her life. Was she going to get better. She had a wisdom about her that NO child should have. She instead should be home playing with dolls, not pondering her life expectancy. Speaking of home, I am home. Mark and I have decided, for now, to do an every other night shift. We will have to see how it works as time goes by. Being home without Zoey continues to be the hardest part. As much as I need to pop home and take care of things here, it is, in many ways easier to just shut out the world when I am down at the hospital. I only wander from the room to use the bathroom and stretch my legs. I always wait until she has fallen asleep. I can't bring myself to leave her when she is awake. It was the same when she was in the NICU. Right before Mark got to the hospital today, she dozed off and I snuck out for a moment. I wandered down the hallway and ran into two moms. We began talking and I seriously fought off the urge to just run away. I stood between the two, one holding a darling one year old little guy. He has neuroblastoma that has spread to his bone marrow. I listened and and glanced back and forth as they spoke and tried once again to try and figure out how it is that I now have become part of a new mom's group, one that finds having a child with cancer, as the common bond. This is our new reality. We will do this, just as we have tackled every other seemingly insurmountable obstacle. I won't like it .... but I'll do it. Because I have to. Because Zoey needs me. I will not let her down, which may require me eating. But you know, food and me are not friends lately. I did manage to get down half a sandwich. I felt horrible afterwards. A week's worth of not eating, will do that to you. Shocks the system I suppose. I once again should try and get to bed early. Or rather earlier, as it is already after 10:30. I still have laundry and a few things to get done before I turn in and quite frankly I dread going up to my room. I miss my husband. I miss my baby. I slept with one of her stuffed animals the other night. It reminded me of her NICU days when I would bring home her tiny baby clothes to wash and I would take a onsie t- shirt to bed with me, just so I could smell her. Zoey had another great day. These pictures show you how absolutely amazing she is. It is as if she says, bring it on, I can take it, watch me. Dig deep princess, rough waters lie ahead but we all have faith in you. We have seen first hand what this child is capable of. Her strength and resiliency are unparalleled. She lights our way through the darkness. Shine bright sweet girl, I feel a bit lost. You lead, I'll follow and God just might have to carry us both.