Crazy, joy filled days ...

Having all the kids home, under one roof, has caused this winter break to fly right by. Too fast. Mark's company shuts down for two weeks as well, so we truly have all been together. Complete. Christmas Eve Mass was beautiful. I looked down at the row of my family and was filled with such overwhelming pride. One moment, a strange one to some, brought me to tears. Zoey was due for a feed. She was in Jessica's arms and I told Jess to send her down my way but she said she would do it. And there it was. My first born, with my last born, hooking up her g-tube and very effortlessly and confidently feeding Zoey, just like it was second nature. Our beautiful norm and to me, the sight was just that, beautiful. Christmas morning found all happy with their haul and we relaxed the majority of the day until we went to our dear friends house for Christmas dinner. The Seguy's, a family that we have known since Caitlin and their Lauren were in preschool, called at the beginning of the week and invited, ALL 11 of us, to join them for dinner. I cried at the invitation. It was so gracious and touched me in ways I could never explain to them. We enjoyed a wonderful meal with the 4 of them and some of their own extended family members, followed by great conversation and some cut throat Bananagrams. We are filled with immense gratitude and love to the entire Seguy family, for including us all. The timing of their invitation could not have been more perfect as this year found our family at a crossroads of our family traditions due to a very sad and devastating estrangement from my extended family.

We have had many late nights, playing board games and utilizing our gift of Wii Sport's Resort... a huge thank you to Matt's parents, Mike and Jean, for that. Lots of lazy pajama days. A trip to Legoland and today Mark, the boys and Taylor, headed to the snow. Danny, Caitlin and Charlotte left this evening. I was so sad to see them go but they needed to get back to their home and life. School starts back on Monday for Danny and I want them to have a few days to hang out, just the three of them before their busy lives resume. Matt went home for a few days prior to Christmas and he just began as an official hire with McCormick Ambulance Company. Yesterday was his first shift...1pm to 1 am. He will be anxious to get to a 24 hour shift that is for sure. He is covering the Hawthorne area. Pretty intense area of LA so I am sure he will see a ton of action, variety of calls and gain much needed experience before he applies to paramedic school. Very proud of him. The rest of us are status quo. Happy and healthy except for a few stray colds here and there. Zoey took about a week but finally kicked whatever that was that she had. Very strange bug and when she she was down she was down and out and now she is back to her smiley, loving self. No plans for the New Year. Staying close to home. Relaxing and savoring the remainder of everyone's time off.

As much as most might think we would be anxious to usher out this past year, and trust me, we are in many, many ways, this past year has also yielded great joys alongside the greatest and deepest of sorrows. We have had to make sense of the senseless and pull from the darkest of days the blessings buried in the depths of those moments. Our hearts have broken time and time again as we have said goodbye to far too many of our precious little friends. We have watched our friends, fellow parents, begin the unimaginable: the walk through the remainder of their lives, without their children. We have watched, awestruck, the amazing strength, resiliency and courage of the youngest of young, shouldering the unfair with such forgiving spirits. These children and their families have changed us forever.

We bid farewell to this past year with a mix of emotions. We enter into 2010 with much of the same. Uncertain of what lies ahead for any of us but equally confident that the faith by which we have relied on thus far, to see us through, will continue to be our ultimate guide. We look to God tonight and thank Him for His unwavering, unconditional love, even and most especially when we have questioned yet another obstacle placed before our littlest love. We are indeed blessed and look to 2010 with great hope. With that hope and steadfast faith, we will no doubt continue to find our way.

Our family wishes you all a very, very Happy New Year, abundant in love and laughter and overflowing with health and happiness.

I have never been big on resolutions but thought I'd leave you with this. My wish is that I might live a little closer to these beautiful, simple words.

"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~

If your still with me, mega pictures to follow. Most are self explanatory. Some from Christmas Eve. Everyone in their new Christmas jammies, except Matt who went upstairs and in true Matt form, whipped up his own! Everyone sprinkling Reindeer food out on the lawn, followed by our traditional read of "Twas the Night Before Christmas." New jammies, reindeer food and all of us piled in one room for the book read, have been traditions since the big girls were very little. A few from Christmas morning. The only one in need of explanation might be Jake with his favorite Santa present. He asked for a ventriloquist doll. Why? Not quite sure, but much to Jakes surprise a "Slappy" arrived wrapped under the tree. He didn't ask for that one, didn't know they even existed but Jake is quite taken by the "Goosebumps" books, saw one of the shows, I believe called "Night of the Living Dummy," nice, I know, with the very creepy "Slappy" as the main character. ...He doesn't read the books mind you but rather "collects"them for the covers...that's my Jake. And then there is Joe ... need I say more... favorite gift that morning... Ultimate Dart Tag .... the pose is classic Joe!


















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Simply Amazing Gifts ....

I received Christmas gifts from my family this year,that left me in an absolute heap on the floor.No joke.I opened the first,an amazing,amazing picture book, put together by Taylor,saw the front and was a goner from there.I said and I quote,"If this is the only gift I get,my Christmas is complete."Well,Caitlin proceeded to pull out the mother of all ... my blog ... published.My blog,in hardcover,from entry one,on March 16,2008 to Zoey's leukemia diagnosis on October 27,2008.Every entry,every picture,every single,solitary comment,all published.The cover is beautiful,the back is beautiful,the inside jacket is beautiful,her words written at the very beginning,beautiful(I re-posted them below.)Two other books are in the works.The next book beginning with the day after diagnosis,up until her release from the hospital in June 2009.The 3rd will take us from home at the end of chemo,through the next year.I was blown away.The work and more importantly the love,poured into these books,just takes my breath away.My gifts finished with another present that revolves around the most important thing in my life,in fact they are my life:my family.I was given a Flip video minoHD camcorder,to record all of our beautiful moments,especially while on the go.I am blessed.Of course I already knew this and it wasn't because of the material gifts I received but rather the love that was expressed so unselfishly to me, by my children.By my husband.Our Christmas was amazing.Simply amazing.But my true gift,the ultimate gift is the gift of these beautiful souls that surround me.They are simply amazing.More Christmas pictures to come ....


*I wish I could show you the entire book by Taylor.Not only the pictures but the captions as well.The first page reads:
"For a mom who graciously gives,constantly perseveres,and never ceases to inspire ..May this book be a reminder of how much each of us love you and how much you have blessed us all."
Do you see why I lost it??Feel free to click on any of these pictures posted and that will enlarge them for you.

*Here is what Caitlin wrote in the front of the blog book:

These pages capture our moments. The beautiful, the tough, the heartbreaking, the amazing. Simple moments and moments filled with uncertainty and pain. Incredible moments of victory and defiance against the odds. All of these moments delivered to us through the existence of one miraculous being, our Zoey Grace.

Who would have known that an online journal would be able to reach out and touch so many? Could we have guessed that Zoey’s journey and your journey as her mother and as a writer would inspire, unite, and encourage countless people? Your writing has been raw and real. Your words have been eloquent and honest. Your messages have given hope. Your heart and its goodness have been revealed through the power of your thoughts which you have selflessly transcribed into a timeless space that immortalizes moments.

Because of your diligence and commitment to sharing, we are able to reflect and rejoice. What a precious gift.

May these pages be a tangible version of what was before only accessible through the computer. Look through them with pride. This is your beautiful work.

Continue writing, continue capturing our moments.

For to us a child is born,
to us a son is given,
and the government will be on his shoulders.
And he will be called
Wonderful Counselor, [a] Mighty God,
Everlasting Father, Prince of Peace. Isaiah 9:6

Serenity ...

It's been an interesting few days here.Miss Zoey continues to keep us guessing and as of this morning,we have no answer as to what is going on with her.Nothing in your face has shown up.No fever.No cough.No sniffle.No throwing up.Nothing.And that is beyond frustrating.For, only those of you that have walked the road of cancer know,there is always,always this nagging little feeling that you just cannot escape.And that,I hate.

She continues to be pale and tired.Not herself in the least bit.Each morning I awake praying to find her better and for the last few days I have been greatly disappointed.So much so, that yesterday we thought it was time to call her doctor who happened to be on service this weekend.Thank God.The saint that he is,met us at his office,mind you,on a Sunday and gave her the once over.He checked her out from head to toe and still .. nothing.He even did a clear catch urine cath and as he was looking at it under his scope I was so praying for a UTI but no.We have been going easy on her feeds,thinking her tummy is bothering her and it looked as if she was ever so slightly de-hydrated so in the end he wanted me to do a Re-Hydration Protocol which entailed us giving her 500 CC over 4 hours of a mineral/salt solution.He also sent her for labs.Uggg.I hate blood work and what's more,I hate waiting on the results.But off we went,on a Sunday, to our local hospital.Luckily he called ahead and there was a technician waiting for us to do the draw.So no excruciating ER waiting.Have I mentioned before what an incredible pediatrician we are blessed to have?I mean he seriously goes above and beyond for these kids,his kids.

Zoey was poked for the second time this week,much to her dismay.In fact the entire morning was traumatic for her.She has really gotten to be so scared and so aware of when we are in a medical setting after all she has been through.Her little heart starts beating fast and she starts sighing really heavy and holding on super tight to me.I feel so bad for the little girl sometimes and as I sat,holding her down for her urine cath,I was really angry.I feel in so many ways,enough is enough.

We left the hospital and headed home to decorate our poor neglected tree.We made smores and listened to Christmas music and I waited patiently or maybe that was impatiently,for her doctor to call.Finally he called to say things looked OK.Her platelet's are down a bit.Hemoglobin down a bit.White count down a bit.Lymphocyte's down a bit,which is good because last Monday they were high,making us think she was fighting or had been fighting something.Maybe that is indeed all we are seeing now but yesterday,I told her doctor that I felt as if I was in the Twilight Zone as this little episode is eerily reminiscent of last October.And that,I hate more than anything.

Once again we are in a wait and see mode.This being chalked up to a virus,which I know, in the logical portion of my brain, is highly likely but remember that illogical portion,that portion that has seen too much and knows too much?That portion is very difficult to ignore in these moments.

For now I have no choice.For now I trust in Zoey.In God.I circle back to what I have known for a very long time and that is:I never had the control to begin with.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

--Reinhold Niebuh


*Pictures:Jess with one of her very first ornaments ... she was and still is,such a cutie.Jake putting on his angel ornament that he bought on his own this year for a family gift... he is such a sweetheart.Joe ON the counter,admiring the ornaments yet to be put on ... he is such a "busy" boy.And Miss Zoey and Taylor,putting on a pediatric cancer research butterfly ornament ... Zoey is such a miracle and Taylor is an incredible big sister.Just missing Miss Caitlin.She and that little grandbaby of mine will be here tomorrow.We cannot wait.

Under the Weather ...

I knew the moment I picked Zoey up from her crib this morning,that something was off because I didn't find a smiley face looking up at me as I peered over the rail of her bed.Instead... pale face.Like serious pale.Like,mom,I don't feel good, pale.The other tell tale sign was her little tongue was going,ever so gentle in and out,only the way it does when she is super tired and doesn't feel well.I held off feeding her for a bit seeing that she did this little gag thingy when I first picked her up.Eventually I fed her slowly,it stayed down and the rest of the days feeds went much the same.I bolus feed her and I feed her rather fast.2 ounces in about 2 seconds.Seriously,almost that fast.Followed by 2 more a half hour later,as well as an ounce of water with it.That is our routine every two hours till bed time.Today I think we probably missed a feed or maybe even 2 but it shouldn't matter all that much.I didn't want to over load her if she was fighting off a stomach bug.And really,I am not certain what she is fighting off.She laid in my arms almost of the day.Slept about 2 hours and was more than ready to go to bed by 7.So that is where my little love is.Sound asleep basically before I set her down.Hopefully she will be her perky self in the morning.Another bummer of the day was that Zoey and I had had a date with Miss Gwendolyn.We took a rain check and rescheduled for the first week in January.Made me sad but in the end it turned out to be the best thing for Zoey and I am certain the Strong's appreciated us keeping our germs to ourselves.

I have felt off today as well but I did receive the H1N1 yesterday and I am certain I fall in the 10% of the population that have some side effects.Zoey's not the only one who finds herself in the smallest percentage grouping.Zoey did get hers second shot last Friday but I highly I doubt that was her deal but as for me I'm fairly certain it was.Much better tonight though.

I decided to re-post these pictures from this day last year.My sweet warrior girl.Amazing how much she has changed since then and feeling beyond blessed, that today, we are fighting some virus and not the beast of Leukemia.

Slow and Steady ...

Miss Zoey and I awoke early yesterday and donned our Pablove shirts and headed to CHLA for labs.Wearing our Pablove shirts,as I wrote to a friend last night,felt empowering.I felt carried by the spirit of the beautiful boy Pablo,as well as so many others,gone far too soon.I felt capable of facing whatever we would face.Yesterday,I felt strong.Don't get me wrong,I also felt that familiar pit in my stomach,but as a friend wrote to me,that feeling was just a feeling coming from a mommie taking her baby to clinic.

Zoey's numbers looked alright.Not bad.Her lymphocytes were up a little, which would make sense since she has been nursing that cold for a few weeks now.Nothing to worry too much about.We still would love a bit more ANC.We are only at 1060.Up a bit from 2 months ago.White count at almost 4,which is also up a bit as well.Platelet's are holding at 200,000 and hemoglobin is 17.That is some serious rich red blood coursing through Miss Zoey's little body.17 is well above the upper range of normal but her doctor just shrugged it off.To be sure though, we are making a long over due appointment with her cardiologist.High hemoglobin can sometimes indicate an issue with heart function.I think however,in the end, the consensus is that Zoey is doing this marrow recovery in her usual way ... her way.I was once again reminded that children with Down syndrome do not follow the "book" and when there doesn't appear to be a cut and dry answer,well,we blame it on that extra chromosome.One doctor told me that some of her patient's with Down syndrome take a whole year, to a year and a half to fully recover.Sounds as if Zoey is going by that book instead.We were cut loose for another 2 months and that,that felt amazing.

I had so many emotions hitting me yesterday.Joy,sadness,gratitude,helplessness.A mixed bag as I walked the halls of that hospital.As I drove.As I spoke and wrote to other mom's,my friends who I have come to love dearly,who don't have their little loves with them this Christmas.Hoping, as I walked away or hit send, that my words were adequately conveying what I hold so deep within my heart.And to you my beautiful mommy friends,you know who you are.I love you all.I love your children.Thank you for allowing Zoey and I to be part of your journey.

So today.A new day.A blessing and a gift.Not taken for granted.Embraced and brimming with perspective and hope.Slow and Steady both Zoey and I go.

I've got nothing for you ...

Seriously.No interesting topic for discussion.(don't EVEN get me started on Tiger!)No exciting little tid bit to share.Nothing.And you know,I kind of like it.And I kind of hate it.Makes me feel a bit too,well, comfy and normal and with Zoey's first blood draw in 2 months, happening Monday,I really shouldn't be getting so cozy.I remember in October,at her last clinic visit,her doctor saying,"See you right before Christmas."And I ... almost choked.In my mind I was thinking ..."No not before Christmas,please."No sense in voicing the superstitious thoughts floating around in my head at that exact moment to her doctor,as he never would have understood.He is a black and white,highly intelligent guy, who would brush off the ill timing,at least ill timing from my vantage point,as his feeling would be and are,that things will be what things will be.And I know that.A t least in the logical portion of my brain I know that, but in my not so normal thinking portion, right before Christmas seemed like the absolute worst timing.But off we will go come Monday.Me,Miss Zoey and possibly a little dose of Xanax.Can't hurt and definitely,defintely might help.

Quick,funny Joe story:The boys have been watching a lot of Christmas movies lately.The other day they had finished watching "Santa Claus is Coming to Town".They were playing and Zoey was totally into rolling around and following them around the house.Joe decides that Zoey will be the baby left at the Kringle's door step and proceeds to read the "note" left for whoever finds the baby.It reads:"Here is your cute baby.She doesn't eat by mouth.She eats by G-Tube.Hope you know what a G-tube is."PS.PS."She doesn't like mashed chocolate" So funny my little Joe.

The pictures:Jess was studying for her Micro-Biology final.Matt was pouring over his Thomas Guide and learning the lay of the land in Ingelwood and surrounding areas,where he is an EMT and Zoey was pathetically going between the two,looking for love.Jessica finally picked her up and was reading to her in a cute,children's book reading type voice but the things coming out were words such as "parasites,fungus" etc. and a plethora of other terms that I could not even pronounce, let alone spell.Zoey thought it was a crack up.She could have cared less about the words,she was in heaven just listening and sitting there with her big sister.Side note would be how absolutely proud I am of Matt and Jess.They have not stopped since graduating from Pepperdine in May.Not skipped one beat since finishing a rigorous 4 year education ,only to jump right back into the fire.They are focused and determined and their work ethic is unparalleled.The nursing and firefighter professions will be lucky to get these two, that is for sure.

Well the weather outside is frightful ..

Okay.We are in Southern California so how frightening can it be?For us,cold and rainy.Cold equates to high 40's today and as I type this I think it's in the mid 40's with it dipping to high 30's tonight.So yeah,frightening for us thin skinned Californians.And before I get any backlash from my East Coast,Mid-West,Utah friends .. I do know cold.24 years in Upstate NY gives me all the knowledge I need.Don't miss the cold.Do miss teaching my children about snow forts and sledding and skiing.Yes,we can go to the mountains for that but honestly,we can't and never have been able to afford it.Holiday in Mammoth or Big Bear has never been in the budget.One day maybe.

Anyway,I ventured out this afternoon and bought fixings for smores and hot chocolate.The boys readily exchanged their after school healthy snacks for a good old sugar high.I quite enjoyed it myself, as did Matt and Jess.Zoey looked on,taking in the action and I tried to entice her with some chocolate,anything,to get her to eat something but she would have no part of it.My very favorite line of the day:Jake saw the picture of his marshmallow on fire and he said something along the line of:"Cool,my hands look like they have been cut off by a light saber like in Star Wars."Joe thought that was hysterical.Oh,my cute boys.

I really am not a fan of the rain and cold but I made the most of it.Zoey got showered this morning and I put her right back into some fresh jammies.I felt like having the boys play hooky from school but opted out seeing Christmas break is just around the corner.My cards are out,the house is decorated and the only thing left is shopping.A few things done here and there.I am not stressed in the least bit because I figure if
I managed to pull off Christmas last year,with Zoey in the midst of round 2,then this year should be a piece of cake.

Nothing too exciting to report here.Joe and Zoey are still nursing colds that just won't let go.Jess had a stomach thing this past weekend ... SO hoping that one passes the rest of us by and so hoping we can all make it to and through the holidays relatively unscathed.

One last thing.If you are looking for a little something to do for others this holiday season,here is a perfect opportunity.Many of you here,know of our little buddy Gavin that just passed away.His mom has begun a fabulous holiday drive for Du Pont Hospital where Gavin was treated all of his little life.Gavin wore Babylegs all the time.They are the perfect thing for tiny legs of little ones, whose precious bodies need to be hooked up to lots of tubes and lines.In fact,Gavin's infamous skeleton Babylegs were the first I saw,the summer before Zoey was diagnosed and I immediately bought a bunch.Zoey literally lived in Babylegs her entire 9 months of treatment.Anyway,click here and learn about Karen's campaign and hear how we can all honor her tiny but might fighter Gavin.Babylegs has a 2 for 1 deal going on right now too.If you do decide to participate here is the address to ship them to:

Karen Owens
PO Box 985
Boyertown PA 19512

Miss Zoey ...

I received a comment the other day and the last part of it asked ... "And,how is Zoey doing?"It got me to thinking that it has been awhile since I have given an update on her and where she is at and an over all run down of the girl wonder.And what a wonder she is.

Today finds the little love with another cold.Hard to say at this point, if it will be a mild one or go south like the last.All I know, is that when I look back at the last year,through treatment,that Zoey seemed to remain amazingly healthy.I think that guardian angel was watching extra vigilantly over her and this year,well,I have a feeling it may be a rough one.The difference though,is I have the confidence now in Zoey's ability to fight things and actually fighting things might not be such a bad thing.Build back her immunity system now that she is more able.As for her clinic schedule:December the 14th we return for our first labs in two months.The longest we have gone,almost ever, since Zoey's birth.We are back to regular draws now that her port is gone.Something she hated before and I am certain she will hate once again.Checking Zoey's blood has been second nature to us since she has been born.We have never known not checking numbers.Someday,I hope to put that routine to rest.For good.There is always major trepidation attached to lab draws.Before she was diagnosed it was waiting to see if she'd dodge the dreaded "L" word.Then she was diagnosed and now, it is anxiety,praying she remains in remission and can find herself in the clear with each passing month and with each passing year.Will I ever stop worrying?Probably not.Today she has a bruise on her knee and took a long nap.Logically,she banged her knee rolling around and she napped longer because she has a cold.A mother, of a child who has had cancer,her mind goes to the absolute illogical because a mother,of a child who has had cancer, has a much different reality than most.So we pray and we move on.

As for other areas in Miss Zoey's life.We are still battling food or lack there of.One day I so hope this child just begins eating again.I have to believe she will.We have the absolute best OT/feeding specialist so I feel we are doing all we can.The rest,like most everything else,is up to Zoey.Her other therapies are moving right along.Vision is consistently good but Zoey does have her therapist wrapped nicely around her finger and my stubborn girl has Christi busy keeping her motivated and interested.We have a new fabulous PT and today Zoey was fitted for a Rifton Walker.Can I tell you how excited I am for Zoey?To bring her up and into the world around her and take one major move forward, to one day hopefully walking, is truly exciting.The walker is super cute.I know that sounds weird but it really is.We picked a raspberry color and with any luck will have it by the first of the year.And finally speech.This continues to be Zoey's strongest area and quite frankly,I never dreamed it would be.As far as actual verbal speech,she has none.Hard to say if she ever will.She could possibly fall into the grouping of children with Down syndrome who have severe Apraxia.Who knows.But her signing and her receptive language,what she understands,is so encouraging.Because of Zoey's stroke she is classified as having Cerebral Palsy.With that diagnosis,we see in her, huge issues with motor planning.Not that she doesn't understand certain things but that her little body fails her from her brain to actually implementing the action.Sad sometimes,yes but I don't stay there long.I rejoice in what she can do and here is the run down of Zoey and her signs.Some are spontaneously and others are prompted and then she does them:daddy,wash,more,shh,water,phone,eat,bed/sleep,milk,hat,up,no,baby,by-bye,yes(with head nod),gives high fives.Emerging:mom,all done and hurt.Body parts she knows:hair,teeth,tongue,mouth,eyes,nose,tummy,ears and feet.She can point to pictures of most all family members when placed on her board.Zoey can:stomp her feet(of course while sitting!),she points up when she hears a plane.She will plug your nose when you say "P-U",she fake coughs and fake laughs,she gives hugs, blows kisses, waves her little hand in the air with a few fingers up for "I love you",claps, stretches and turns pages in books.Whew ... I think that is about all.We are so proud of Zoey and we cannot wait to see what lies ahead.It's sure to be magical ... just like her.

Christmas Card Photo Day ...

Getting 10 people looking good and acting accordingly, for a photo, is a nearly impossible feat but the day we did this,actually turned out to be fairly painless.We took them up at our church.It took about an hour.No tears.No screaming or yelling.I call that success.

My favorite moment of the day was when Mark and I were sitting on a bench,watching all the kids and he said something like,"I'm really enjoying this."He was serious too.I think he was just gazing at this family that was before him and he was overcome with emotion.Hard not to be when you have kids like ours.How the two of us managed to produce these remarkable children is beyond me.

My very "busy" boy Joe,was good as gold and very patient while taking pictures but I want to bring your attention to one in particular ... the one of Matt,doing his trade mark "dweebis"move,don't ask,but click on it,it will enlarge, and check Joe out in the back ground ... he escaped across the parking lot and was ... filling his pockets with rocks!That's my Joe.