Pictures can be deceiving .....

.... especially these ones.These were taken last night when Caitlin and Danny stopped by on their way back to San Diego.Zoey was so darn cute.She really put on a show for them.However,there was much more going on than meets the eye.As I have mentioned in a few posts,Zoey has been battling nasty allergies while inpatient and what is now,finally,being acknowledged as a a cold.Hello??? I have been trying to tell someone,anyone who would listen,that there was so much more going on.But as usual,I'm just the parent,no degree and therefore have no idea what I am talking about.Oh sure,to my face I am told I am my child's best advocate and a partner in her care but the bottom line,behind closed doors,I know nothing.Or at least nothing they want to hear.So today,after documenting ALL day long the downward spiral of my daughters health,maybe now someone will listen.And trust me,they will listen from now on.I just received a call from Mark and Zoey has Pneumonia.Yep,after begging for someone to do something for my child who was coughing up a lung,along with her feedings,we have confirmed Pneumonia .... not allergies.Well,sure glad they went to medical school and not me,the ever present, overreacting, nagging mother.What do I know?Now what about the parents who obediently listen to those they have put their complete faith in caring for their child,no questions asked and in the case of our hospital,with an eighty percent Hispanic population,there comes a major language barrier.What about them?Mad does not even come close to expressing how I am feeling.Disappointed beyond belief and if anyone out there knows me,this does not end here.Tomorrow another 4th floor rampage.This is a matter of life and death.No exaggeration. No dramatization.Plain and simple truth.We insisted they do a swab for RSV.Not that it does us any good at this point but what about the countless others that have come in contact with Zoey over the last say,week and a half?I would have thought that the moment they saw Zoey had a cough and runny nose that they would do whatever was in their power to prevent a spread of a potentially life threatening virus to run through our floor.Simple proactive response not reactive.Let us not forget the NORO virus that shut our floor down at the first of the year due to blatant mishandling of initially infected children.So tonight I sit here thinking what good did it do me,or rather and more importantly do Zoey,to keep the medical staff, entrusted to care for Zoey,up to date with changes I saw in her?What about the children that do not have their parents there?I have the benefit of having had Zoey born into crisis and basically revolving from one thing to another over the last 2 years and I know her like the back of my hand.what about parents who do not have the experience and the wherewithal to see subtle signs?Negligent care by medical personnel costs lives.I will be darned if I will stand by and allow anything to happen to this precious child after her fight for life over the last two years.Especially due to lazy,sub par medical care.Sorry folks but I am beyond, beyond.An angel was watching over Miss Zoey today,along with some divine intervention.You see this morning when labs were drawn Zoeys ANC went up instead of down.Not the right direction of course but in this case,the presence of Neutrophils allowed the Pneumonia to be seen.If she were neutropenic then it would not have been seen and we would be shooting in the dark with various big gun antibiotics.Tonight the prayers need to be flowing.Zoey needs to kick this thing,quickly.This round is already taking a lot out of her and the road is bound to be long until we see daylight to round 4.Scared?Not really.Frustrated?More than you could ever possibly know.Most important thing now however is Zoey.I will try tonight to flip my frustration to some positive vibes and powerful prayers.It's midnight and I am going to turn into a pumpkin so it is bed for me.Update tomorrow.

"It's the circle of life, and it moves us all, through despair and hope, through faith and love, 'till we find our place, on the path unwinding”

This morning I attended the memorial service for sweet Thomas. What an amazing out pouring of love and support for this child and his family.Our church was filled to absolute capacity.We wish so desperately that there were something,anything, we could do to ease their pain,lighten their load and change the course of this journey that they must now travel.We continue to pray for peace and strength for their days ahead and,I,like so many others,feel privileged and honored to have traveled a bit of this road alongside them.The Hearne family has so unselfishly shared their courageous boy with us and we are forever changed because of him.Godspeed little man.

This afternoon was Caitlin and Danny's baby shower.I found it to fall on a most appropriate day.Celebration of life.Much like the morning as well.The beauty of new life and rebirth.A testament to the holy season we are in the midst of.My faith was not shaken today.I truly tried to not seek answers for the why's of life and the sadness that surrounds us on this latest chapter with Zoey but instead focused on the knowledge that we may never understand but we can rally in faith that we are not alone on our journey.I saw the pure goodness and joy in both places today.God's perfect plan in the circle of life.

Today Caitlin and Danny were truly humbled by the generosity and love shown to them as they embark on the greatest journey of their lives thus far.And once again we,as a family,were humbled as well, by family and friends who showered us with their unconditional love and support.The only thing missing:Zoey and Mark.How I longed, in so many moments of the day,to be a complete family,sharing the beauty of the day together.Mark missed us as well.Zoey has struggle a bit the last few days.The harshness of her treatments over the last 5 months begins to show it's face the deeper we head into rounds.She is still Casper white and Monday's labs will give some insight as to when a "red blood pick me up" will come.Her g-tube is yucky,yucky,yucky.Not quite an infection but being closely watched.And to top it off,the princess has a cold along with the allergies that have plagued her with every admission.Not horrible stuff but enough to make some parts of her day not so very happy.But like everything else Zoey does,she is fighting her way through it all.Continue to pray for our little love.Pray too please for the Hearne family as they navigate through the days ahead,adjusting to their new norm without sweet Thomas.And for Caitlin and Danny and their very own little love, to be named Ava,may she continue to grow healthy and strong as we anxiously await her arrival into this great big wonderful world.

"Keep your face to the sunshine and you cannot see the shadow."~Helen Keller

A few pictures of my little sunshine,who continues to light the way for me.This round seems to be taking it's toll on me physically and emotionally,whereas Zoey continues to not miss a beat.Her numbers are on the decline and by the beginning of next week we should have a better idea of how long we might be hanging around CHLA.Should,being the operative word.Zoey is still sporting that pasty white glow.Hemoglobin is not too awfully low but the way things are looking,a transfusion will probably be in order soon.If not Friday than over the weekend for sure.Last round Zoey only had one transfusion of red and no platelets.Hoping for a similar round.At the risk of sounding like a broken record,I am exhausted.By the time I sit down at night,I barely have enough energy to post let alone check on our friends.So friends,sorry.You are all never far from my heart and I think and pray for you often.That's all, as I am truly unable to keep my eyes open for another minute.Our humble thank you's ... as always.


*Dad surprised us and stopped by for lunch.Nice distraction in our day .Zoey wanted nothing to do with me once Mark walked through the door.

My bed beckons .....

but before I oblige,a quick update.I arrived home later than I usually do when it's my evening home.8:30 tends to be my norm but today it was more like 9:30.What a difference an hour makes.Mostly from the stand point of spending time with the kids.The boys were still up but seeing it was late, there wasn't much time for hanging out and catching up before it was teeth brushing and off to bed.We snuggled into the bottom bunk and read a few books.After prayers it was off to do a few loads of laundry,pick up the house a bit,unpack my hospital bag and well,still tons to do to make the morning go smoother but honestly,I just don't have it in me.I am exhausted.If my head hits the pillow before midnight,I'll be happy though.As for the princess ... finding her way.This morning she awoke and the first thing I noticed was that familiar pasty whiteness to her precious face.A few rounds ago I would have put money down in Vegas that her hemoglobin was down but as each round has proved,that whiteness is just a precursor for things to come.Meaning,her paleness is just an outward signal of the treatment taking hold.Labs were drawn and numbers have already started to drop and now the familiar number dance begins.Zoey has remained fairly constant in putting forth a pattern to her bottoming out and I feel certain this round will be no different.In fact I seriously doubt if my mental state can take anything other than a Zoey picture perfect round.But,it's a crap shoot folks and our floor this week lies testament to that.Very strange vibes up there this week.Eerily quiet and the grouping of children and families that we have grown close to over the last 5 months seem to all be around.Various stages of treatment but all there.The quiet and stillness won't last long.Unfortunately,beds will fill before you know it, with new diagnosis' and returning patients.How I wish there weren't a need for those beds to be filled.Speaking of beds,we were moved into an enormous room.I am telling you,even though we have a roommate,what a difference some space makes.I kid you not,if they try and move us,I will not go without a fight and I might seriously consider chaining myself and Zoey to what ever solid fixture I can find in there.That's how great this room is.Talk about a boost for your mental health.And as for roommate,can I just say,oh,my,gosh!!!His name is Christian.He is two.He has AML and he has Down syndrome.Darling,absolutely darling.I guess that's all for now.Not very exciting but trust me,when you are talking 4E,you can do without excitement.Now,I have a confession to make.That bed that is beckoning me isn't exactly mine .... it's Joe's.I have had the hardest time this round going to bed without Mark and without my littlest love right next to me.So, when I head up stairs lately I have been crawling into Joe's bed and sleeping with him.Joe wanders into my bed every night anyway so I figure I will save him a trip.Tonight Jake is in there as well,it's a full size bottom bunk,so tonight I will sleep soundly next to my two best little guys.Keep those prayers coming please and tomorrow I will post pictures of the brave little hero.

24 Hour recharge .....

When Zoey was first diagnosed,one of the most difficult parts,excluding the obvious of course,was trying to keep some normalcy amongst the chaos.We have gotten pretty good at shooting from the hip when life has thrown us a curve ball the last few years.We all tend to come together and develop a game plan and move forward.Cancer became a whole new ball game and required more of a battle plan rather than a game plan.But once again our family and friends circled the wagons and we have found our way through what,at the beginning felt insurmountable.My children never cease to astounded me with their adaptability and my husband has never,not once, lost his "the glass is half full" attitude.The big girls have sacrificed and the boys have had to learn to wait,be patient and except their lives being turned upside down,again.One might envision a family totally coming undone.Frazzled,fried and totally stressed out but honestly,we look fairly well,normal.We have not come undone rather we have become cohesive.We have bonded and we have learned that we are stronger than we ever knew.We have of course missed our together time.We miss going to church together.We miss going to the park and out to dinner together.We have missed just hanging out at home ,all together.Yes,cancer has taken some time away from us as a family but these times are just moments in the bigger picture and that bigger picture is what we have kept our eye on for the last five months.Each and everyone of us have said that we have willingly traded these moments for the lifetime of moments that await us.We do this now,we miss these family moments now,with the hope that we will have a lifetime of family moments waiting in the not so distant future.We have to hold on to that.We all have made plans for that time.That "after cancer time" but we know that we cannot miss these now moments while we wait.During round one we found that for everyone involved, it was best that Mark and I both spend an entire day,separately,home on the weekends.Friday night to early Sunday morning became my day home and it has continued that way since October.A wee bit more than 24 hours goes by really fast but we truly try and make the best of it.Today was no different.Nothing ever too exciting but just some good,easy going time together.Most Fridays,Jess is home for Team in Training.Sometimes Caitlin and Danny as well but this weekend,just the boys and Taylor and I.We stayed in our jammies till late morning.Taylor took off for work by 10:30.The boys played with their Legos and their robots and I caught up on emails and blogs.We headed for haircuts followed by a visit to a new "old time"candy and soda shop that just opened.Jake,Joe and I visited Taylor at In N Out and I reluctantly gave into the boys pleas for burgers.Anyone that knows me,knows we don't do red meat so suffice it to say this was big.Winced as they ate,not so much the boys.We filled the afternoon and waited for Taylor to get home from work and after she showered we took off to surprise Zoey and Mark at the hospital.And boy were they surprised.Zoey was so excited to see the kids.She was literally jumping out of our arms to be held by the next eagerly awaiting arms.She showed the kids her new trick:Blowing kisses.Pretty darling.Blows kisses to all who cross the threshold of her room.We just stayed a little while and then headed to The Griffith Observatory.A very cool planetarium.In Joe's words,better than Disneyland and wished he lived nearby so he could go everyday.As we were leaving Taylor and I were commenting on how packed the streets and parking lot were at almost 10:00pm and although the Observatory is spectacular we wondered why,and Joe quickly stated,"Well,because it's amazing!"The kids were sound asleep within 15 minutes.Joe passed out with what almost looked like a grin,mouthed hanging open, wearing his souvenirs:an astronaut suit.I would call the day a successful recharge.Tomorrow I head out early.I will miss my days like these with my little and big loves but more will come.Much more and because of these missed moments those moments will be all the sweeter.

"Inhale, and God approaches you.Hold the inhalation, and God remains with you.Exhale, and you approach God.Hold the exhalation, and surrender to God"

A few weeks ago I sent this very quote to my friend Tish.Today news came.News I knew was coming but still somehow,it took my breath away.Yesterday,Thomas,Tish's beautiful eight year old little boy,lost his 8 month long battle with a rare form of brain cancer.So rare:Thomas makes number 55,ever.Thomas fought this disease with such bravery.He fought this disease with such courage.And,as I wrote to his mom tonight,Thomas fought this disease with such beauty.Thomas'entire family shared every step of their journey with such unselfish grace and dignity.I often step back and wonder if I could ever be as strong.Tonight,I once again write of such indescribable sadness but like so much of the 4th floor,that sadness is equally balanced by indescribable blessings.My 4th floor of unparallelled contradiction.My 4th floor family.My daily inspiration and my source of constant strength and perspective.In truth,not at all my floor but instead Zoey's floor and a floor belonging to all the rest of these children that lead us on this path of uncertainty but shine so bright that they light the way.Tonight I breathe a little heavier but with each breath, that same air I breathe is filled with angels all around me.Thank you Angel Thomas,you were a valiant soldier who left me forever changed.

*Zoey has completed her 96 hour chemo and we begin the wait for counts to plummet and than rise again.If we can avoid complications then we are looking at approximately 2 1/2 weeks more.This is scary time we enter now and where prayers for her body and it's strength to fend of the bacteria foe are needed.So proud of this child once more.

"Where there is sorrow,there is holy ground."~Henry Wadsworth Longfellow

How in the world can I begin to convey to you what the last two days have held?A mere 2 days but in some strange,once again inexplicable way,these days have felt like weeks.Miss Zoey had a most difficult start to round 4.Just as expected,at about hour eight of chemo hitting her system,full force,Zoey let the world know she was none too happy.Nothing could ease the stress and tension and overall agitated state of her body.No soothing words,poorly sung lullabies,or gentle rocking and swaying would help.There was absolutely nothing this mother could do to rescue her precious 2 year old from the horrible side effects from the onslaught of chemicals,necessary chemicals,that were coursing through her veins.I often just stood over her as she tried to give into sleep,and I prayed.That was all I could do.Just pray.Heartbreaking to say the least.Benedryl took the edge off a bit but only time would be the true test.Time and of course Zoey.This child once again powered through this horrendous phase like the amazing warrior she is.Today her smile reemerged and except for some nasty tummy issues, she has gotten into her chemo groove.At 10pm tonight she hit the 48 hour mark and at 10pm Friday night,the chemo portion of round 4 will be complete.Quite the milestone our little love will have reached.So we wait and I marvel and I pause and I remind myself that this is no dream.This is our new identity for now.A family,a child,fighting cancer.Today was a particularly difficult day for other reasons not related directly to Zoey.In fact, difficult doesn't even begin to skim the surface.Gut wrenching news came that our sweet friend Sol Merie,Zoey's little Down syndrome partner in crime,will go home,minus her miracle.It is not meant to be.All this beyond my understanding.The very thing that was suppose to lend itself to cure,having Down syndrome,doesn't seem to have made a difference here.Leukemia has the upper hand and the rest of us are left wondering how can this be possible.Not Sol Merie,the little light that shines for us all on 4E.Tonight, Sol Merie's daddy came and danced with his "two" little girls.Zoey loves him.She nuzzles into his shoulder and never wants to let go.Tomorrow I will have to say good-bye,or as Sol Merie's daddy says,not good-bye,just ... so long.How will I say good-bye to this beautiful family?To Sol Merie?I love this little child.So tomorrow will come and with it, I will come armed with the only thing I seem not to be completely 100% depleted of and that is my faith.Tomorrow,I rise,because I can and my faith and I will walk the very holy ground of CHLA 4E and W.Send your extra prayers of strength and courage along with me, won't you?Because tomorrow I think we are surely going to need them.

*Sol Merie and her daddy and Zoey dancing yesterday.

Finally,round four begins .....

After an extremely long day,Zoey's 4th round of chemo is under way.At 10pm this evening, her bottle was hung and with the exception of changing bottles as they each empty,chemo will remain coursing through her little veins for the next 96 hours straight.We have never begun at night like this before.Makes me a bit uneasy I must say,as I feel as if the daylight hours lends itself to me being better able to watch for reactions and side effects.However,vitals will be done around the clock and I am sure things will be fairly uneventful.At least lets hope and pray they are.Mark is with Zoey tonight.We started right in with the routine that seemed to have worked well the other 3 rounds.I will be with her everyday,except Saturday and will stay 3 nights a week and Mark will stay the other 4 nights.We just need to get into the groove again.5 weeks at home has certainly spoiled us and although I was ready to get moving with another round,being back is so tough.But we will adjust.Just as we have in the past and before you know it,we will be home.Seems far off again but it will come.One day at a time ... one moment at a time.Please pray for the little love.Day two is generally really hard on her.My reminder on the harshness of this regiment is likely to come sooner rather than later.Zoey has been such a trooper today.For now,all smiles,interspersed with a few cautious once overs for new faces who enter her room and more of a "if looks could kill", glares for anyone who even attempts to touch her.But for dad,as you can see,all smiles.Well,I am off to bed.I can tell that the familiar feeling of not being able to put two coherent words together, will soon be creeping in.Thanks for checking in on our tiny hero and thank you for your continued love,support and prayers.

The Best of Times .....

That is what I would have to say the last five weeks have been.We have been so very fortunate to have had 5 weeks home between rounds.Can you believe it?Virtually unheard of.And the fact that Zoey has remained healthy has been such an incredible blessing.These weeks have allowed us to reconnect and rejuvenate and appreciate the beauty that often lies unnoticed in our daily lives.But tomorrow,the word from the big house,that would be CHLA,is that round 4 will begin regardless of her numbers.It's time.She looks good.Great in fact.Her numbers are outstanding and well,time to get rolling.Two more rounds to go my little love.That's all.We are in the home stretch.Scary stretch but home is at least on the horizon.This round will be identical to the last three.Hard,nasty,toxins pumped into Zoey's tiny body for 96 hours straight but a necessary evil.A means to an end,God willing.We gather as her family and all that love her and ask our Heavenly Father to bless this sweet child.To cover her in His grace and carry her through these days.To bring strength to her body when it becomes weary,because there is no way around it,she will become weary.In those moments we can only rely on faith and faith alone.Zoey is an amazingly,resilient child and we have no doubt in her ability to knock out this round in the same Zoey fashion as she has done each and every other time.We once again humbly thank you for your unwavering support and love for our family and most especially Miss Zoey.I will send word from our home away from home as soon as I can.Most likely tomorrow night and until then,Zoey sends her love,kisses and trade mark hugs,to you all.

Beautiful boy ....

I have had the most difficult time moving past my post about sweet Thomas.Everything seems so inconsequential and pales in comparison to the journey that the Hearne family is walking.I don't believe it will be anytime soon that it will become easier.Today,in many ways, seems to be the absolute wrong day to begin posting again,almost disloyal in this strange inexplicable way.Today,is Jake's 8th birthday.Thomas is eight as well.I have found myself comparing the two often over the last several months.As Jake has lived his little life,playing outdoors,going to school,building Legos,I have tried to make sense of why it is that Thomas isn't doing all of the same.I can't wrap my head around it.I don't think I ever will.Yes,today is my beautiful boy Jake's birthday.My loving,and kind and patient and sweet and funny and smart,beautiful boy's birthday.A little guy still,in so many ways.I often stare at him as he sleeps and still see a glimpse of my precious baby boy.A baby boy after three girls.So odd but so very natural at the same time.As if he was waiting all that time for the perfect time to make his appearance.People have often wondered about the age difference with our children.Some assume a second marriage.Others assume a "mistake".We are always eager to tell his story.The coming of Jake Matthew into our lives.We quickly tell of Taylor's birth when I was 27.A difficult pregnancy.Third child.Life seemed fairly complete.I had my tubes tied during my c-section.Regretted it before I hit the recovery room.Regretted it for nine years.Then a journey with another family spoke to our hearts and reminded us once again about the important things,mainly the importance of new life and family.In June of 2000 I had my tubes reversed and the miracle of Jake came the following spring.He led the way.Headed up our "second" little family.And lead he does.An amazing big brother already.A sweet and gentle soul.8 years ago the blessing of Jake.We love this little man and can already envision the older man he will become.But for today we rejoice in his 8 year old self.The beauty of our days with him right now.And beautiful they are and how absolutely blessed we are for the gift of sweet Jake.Tonight I pause and thank another beautiful boy for his life and the courageous way he lived it at a time when baseball and soccer should have consumed his days but didn't.Because of Thomas' life I will cherish and treasure all of my days with Jake all the more.Thank you to Tish for the gift of your beautiful boy.

*Jake and my niece and Jake's best little buddy,Sophie Grace.

Tears are God’s gift to us. Our holy water. They heal us as they flow. ~Rita Schiano

Today my tears flow.They flow for a fellow mother,another family,for a precious boy.Today my tears flow for Thomas.A magical boy,filled with the most gentle of spirit and the kindest of heart.His mom,my friend Tish writes, "God Answers Prayers. He not only answered our every prayer these past 8 months, but He never failed at guiding us with each and every bump and roadblock along the way. God's plan for Thomas and our family is to take him HOME to heaven."Those words embody the Hearne family and the manner by which they have lived their lives through the unimaginable.This is a family that led by example with their unwavering faith and their awe inspiring courage as they battled with every thing in them to see Thomas to cure.It is not to be.I ask you to lift this family in prayer as they walk these last moments with this amazing boy.May God cover them in His grace and carry them through these days.It has been a privilege and an honor to walk beside them as they so unselfishly have shared their journey with all of us.They are not only part of our CHLA family, they live right here in the same town as we do.We attend church together and have been supported by the very same incredible community as we,two families,have waged our war against cancer.And for anyone who doubts it for one minute,let me tell you, ... this is a full on,all out war.That reminder came loud and clear today.This is our peer group now.These are the families that we lean on, and listen to and cry with.This is our life now.Today I am sad but I am rallied by one small boy and the way he has lived his life and by his living I move forward .... because he lived.

"A baby is God's opinion that the world should go on"~Carl Sandburg

Our lives since Zoey's birth, has given us that wondrous gift of perspective that I often talk about.We once believed that we possessed it,perspective, but in reality it looked as if we needed a refresher course.So Zoey came and bestowed upon us the gift of her life.Her perfect life.Perfect by our definition, not that of medical science or even some portion of society.We live and breathe Zoey and because of Zoey we live and breathe a bit deeper and much more fuller.And with that, we truly strive to place importance on that which we feel is most important.In our case :LIFE.With that said,it is with immense pride and resounding joy that we announce that our little world will be getting just a little bit bigger.And before you all have a heart attack .... no I am not having a baby .... but Caitlin and Danny are.They will be welcoming a sweet and precious baby girl into this world at the beginning of July and we cannot wait to meet this child.Danny and Caitlin are two of the most amazing young people I have ever known.They are rooted strong in faith and family and with that and the love and support of all of us,they will more than find their way.We wish however,that they did not live so far way.It would be a whole lot easier to lend a hand if they were closer but their life, right now, is in San Diego.We will continue to love them unconditionally and give to them all we can in spite of distance and together we will forge this new road that God has so graciously set before us.Before them.It is truly a blessing.Please join me in praying for this new life.That she continues to grow healthy and strong.Please pray for Danny and Caitlin as they embark on this most amazing journey called parenthood.We definitely keep things exciting around here,don't we?I would surely take this kind of excitement over some that has occurred in the past ... this,this is a beautiful thing.We are incredibly thankful that God had the opinion that our little corner of the world should go on.

Each time I go there, my heart breaks by just that much more ...

Children's Hospital of Los Angeles, in case you were wondering. My guess is you probably knew that though. Today was a sad day. Zoey is fine. Home ... but fine. Her ANC actually dropped. Should have foregone the Bactrim again this weekend. Won't make that mistake next week. It is also entirely possible that the chemo they gave her in her lumbar puncture, although the one they chose is not usually suppose to lower ANC, in her case maybe it did. There she goes again, doing things her own unique way. All the rest of her numbers are great. White: 4.07, Red: 4.62, Hemoglobin: 14.3 and platelets: 256,000. Then the kicker, ANC 530. Down from 690 last week. I really prepared myself for her ANC not being 1000 but I didn't dream it would go DOWN. Saw her doctor in the hallway briefly. He continues to assure me she is fine. Me, I worry. Just my nature. He said he has had kids take 3 months before they are ready again. 3 MONTHS!!! I so was hoping for a normal summer. Normal for us at least. Well, I left the office, not nearly as dejected as last week. I left knowing at least we were going home. So many are not. The outpatient clinic today, primarily the Day Hospital, held things that I wish no one to be a part of. I left that clinic feeling grateful and guilty at the same time. Strange combination, I know. From there Zoey and I headed to the 4th to visit some friends. First stop Jayden. Our fellow AML patient and former roommate, who is battling a nasty blood infection. They haven't been able to get a handle on it yet though. Hopefully the anti-fungal they are going to try will do the trick. Next a quick hello to Ricca, another AML buddy, who looked tons better then the last time we checked in on her. Her spunky little self. Poor baby hasn't been out in like 2 months. From there came a few reminders of the fragility of the floor. Devastating news about a fellow Down syndrome darling who has relapsed and will go to Bone Marrow Transplant, I believe her mom said, next month. I was in shock. If you saw this magical child you would think of Zoey. Whole head of hair, constant smile and now...a bigger fight ahead. A donor has been found in a sibling so that is one major hurdle won already. All I can do is continue to pray and pray. What else can we do? News also came of a little guy who I knew had relapsed but now it looks like he will head to the BMT unit as well. I was so hoping that it wouldn't go that way. That unit is a whole new ball game. We all know that on the 4th floor. Those kids are warriors times a 1000 percent. This sweetie didn't find a match in his sibling, so a donor will have to be found in the National Marrow Bank or during a drive. This particular baby, I call him baby because I don't think he's quite yet 3, still a baby, still so much left to do, well, he happens to live in very close proximity to us and the community has come together to sponsor a drive for him. The drive happens to be at the school where two of my girls graduated from and where this little guy's daddy works. I would like to take this opportunity to talk to you about registering as possible bone marrow donor. The process is easy. Usually the initial test is a mouth swab and then it goes from there. Simple but a potential selfless lifesaving act. I linked to this site last year, knowing full well then that this could be a possibility for us or rather our sweet Zoey and even if Zoey was not at risk, I would still feel the exact same way. Almost ten years ago we lost a family friend to AML and although things did not end up the way we all had so prayed for it to, she did find an international donor. We have to do something. This thing, this thing called cancer... we need to make monumental steps towards a cure. Although research has come so far, we still have so much further to go. Today I decided, even in the midst of seeing Zoey to a cure, I cannot just wait. Everyday, be it leukemia, neuroblastoma, Wilms Tumor, Medulloblastoma or any other pediatric cancer, we have got to get to a cure for all these kids. We have to. My heart just can't take much more of this. We must reach beyond our comfort zones and dig deep. We have to do our part for all the precious children I have come to know and love. Kids like: Thomas, Pablo, Madison, Ricca, Jayden, Christian, Reuben, Gabriel, Faith, Sol Merie, Kai, Christopher, Sarah, Emily and Angel Luke and still yet, for the thousands I don't know. All fighting. All battling just to make it back to the childhood they so deserve. Please take the four minutes and see for yourself why we cannot sit idly by and do nothing. Pause my blog music to listen.

Dare I even speak it ....

I suppose I will.What is there to lose.Tomorrow we try again for Round 4. 7:30 am blood draw and an hour later we should have our answer.Come on ANC ... we need to make a 1000.If we do they have us scheduled as coming in as inpatient status soon there after.We verified with the 4th floor that there were beds available,because often there is not but it looks like we should be in fairly good shape to get settled in at a decent hour.Hopefully chemo starts as well.Baring any unforeseen set backs.Like what I am not sure but it could be anything.Mainly miscommunication but lets hope not.I am ready to start.But is Zoey?Her little body has had such a nice break.A much needed one at that.I have spoke to a few moms up there now.Some on round 2,3,4 or 5 and all having a really hard time of it.Fevers,fevers and more fevers.I pray for the little love.Praying hard that her tiny body will withstand the onslaught as well as she has in the past but again,anything is possible.We had a much needed relaxing weekend.Housebound isn't so bad.Underrated really.Requires you to stop and just be.Having everyone home was just what I needed.What we all needed.Tomorrow comes and with it the unknown,a measure of uncertainty but also with it the knowledge we will all fight this together and help sweet Zoey how ever humanly possible that were able.The rest we leave to God.Once again calling upon Him to protect her and cover her with His amazing grace.We will keep you posted but until then keep those prayers and good vibes coming.We have come to count on them and with that,have come to love you all.Bed calls,actually screams.It's 1:30 am and I have to be up at 5am ..not pretty.

*Zoey and Joe just loving on each other.Zoey trying desperately to "play' Wii.Zoey just being cute little,impish Zoey.

Another Birthday Celebration ....

Caitlin Sarah,sweet girl,you turned twenty today.My brown eyed beauty.You are so not the average and ordinary 20 year old.You are wise far beyond your years.Always have been an old soul.So loving and giving.Selfless and forgiving.Funny like no other.You make us smile with your quick wit and cry with your caring, compassionate heart.We love you so much Caitlin.We miss your presence here everyday and look so forward to your visits when you come home for a weekend.Your siblings adore you.All of them ...yes, even Jess And Taylor.Most especially the little guys and your little Zoe muffin.You have evolved into the most amazing young lady.Your work ethic is unparalleled and the love you have for your clients is inspiring.I stand in awe of your unwavering faith in God and His son and the way that same faith leads you in your daily life.Amazing things await you.Truly amazing,miraculous things.What joy it will be to watch you continue your journey and what a blessing you continue to be in all of our lives.


*And the new look ... a huge thank you to Rebecca for the amazing job she did on Zoey's blog.I am so thankful for the time you spent and the care you took in making it look perfect for our sweet little love.So, if you get a moment,click over and check out some of the other sites she has done.She is very talented and again a great big thank you Rebecca.

Have you heard of St.Baldrick's Foundation?

Well,I certainly hadn't until my friend called me last night after seeing a flier in a local shop.Another initiation into the world of pediatric cancer.Here is it's description in a nutshell:St. Baldrick’s began as a casual conversation between friends and has exploded into the world’s biggest volunteer-driven fundraising program for childhood cancer!St. Baldrick's is the world's largest volunteer-driven fundraising event for childhood cancer research. Thousands of volunteers shave their heads in solidarity of children with cancer, while requesting donations of support from friends and family. In nine years, events have taken place in 18 countries and 48 US states, raising over $50 million, and shaving more than 72,000 heads.Is that not the neatest thing?What an incredible opportunity to be part of an event to show our support for young cancer patients worldwide.Now,I am not going to actually shave my head but I am going to go to our local event and help,along with my friend and our families and lend a hand in whatever we can.Maybe I can convince some of my men friends and family members to actually shave their heads.I probably would have had better luck if our own resident cancer warrior had indeed lost her hair during her last five month battle.Oh,Miss Zoey .. always have to do it in your own unique way.Anyway, we may have one taker ..my girlfriends son is thinking about it.Thinking.So if anyone is interested,go to stbaldrick's.org and learn a bit more about this amazing organization and maybe see if there is an event in your area.If you want to watch the video don't forget to pause our music at the bottom.

The love of a sister ....

Taylor is one amazing 17 year old.At least in my eyes.As a senior in high school,winding down her high school years,preparing for college,all the while working part time and fitting in a boyfriend she has dated for a year and a half ... she always makes time for her younger siblings.And sometimes by default.Taylor has become the surrogate mom around here.With Jess finishing up her own senior year in college and Caitlin in San Diego,Taylor is the go to gal.We most certainly could not have weathered the last 5 months without her self sacrificing.A large percentage of the responsibility falls square on Taylor's shoulders when we are inpatient for so long.She rarely complains and always goes above and beyond.She runs errands,takes kids to doctors appointments,cooks and well, the list goes on and on.And on top of it, when Zoey is home,Taylor spends a great deal of time loving on her,as witnessed by these very sweet pictures.We love you Taylor Morgan and we are so,so very proud of you.We know that life around here has left you having to do more than your fair share and we also know there have been times when it has been far from easy.You have done such a phenomenal job of balancing things,better than some twice your age and for that and so much more your dad and I thank you from the bottom of our hearts.

The Gift of Giving .....

Our friend Lacey,mom to the very darling and very brave Jax has opened shop.Like she doesn't have enough to do, she now has a site solely for the purpose of making blankets for little ones who spend a great deal of time in the hospital or those little loves who are suffering from complex medical issues.She and some blankie making helpers are selflessly doing this ... for free.Amazing and just another example of someone who is living outside their own little corner of this world and reaching out to give back to others.I am proud of you Lacey and we are honored to have one of your exclusive,made with much love,adorable blankies.So pop over please and congratulate her and if you know of a courageous little one who could use a cozy blanket,don't be shy,let her know.

Changed for the better .....

I was born and raised in New York.Our oldest two children were born there as well.We ventured west in 1989 and if the truth be known,I feel more of a native Californian that a New Yorker.Upstate New York that is.About 3 hours from the city.I didn't visit the city often.Life never lent itself to it.Kids came and we found ourselves needing to make a life changing decision.Mark is an editor.Television mainly.The two hot spots in his industry, back then and still probably today, were LA and NY city.We believed then and still do to this very day,that choosing LA was the best choice to raise a family.I am sure others probably might have a differing opinion but for us,we haven't looked back.However,there is one thing about the city that LA cannot hold a candle to and that is the shows.Like,I am talking Broadway shows.I do believe that if I lived in NY I would be a Broadway junkie.I don't know exactly what it is.Most likely that unfulfilled desire to sing and dance.And when I say desire,I mean,not that I have talent in either of those areas. I instead often dream that I would have been gifted by them.Instead I live vicariously through my of love music.All kinds.And to me,when I am all alone in the car,I think I have the best voice ever.Back in December of 2007.Taylor and I went to the play "Wicked" here in LA.Mark and I had actually given her two tickets for Christmas.I placed the tickets in a box and on top of the tickets placed a black cape,striped witches socks and a witches hat.She was so thrilled.I assumed she would invite a friend to go and I would be the chauffeur.No,instead I got the invite.Well,we both feel in love with the entire production.Every single solitary aspect.Totally in love.The music especially.So many of the songs but for me then and still now,one in particular.A song called "For Good".A while back,a very dear friend of mine posted about her own experience at "Wicked".She began her post with this line from that very song :"Who can say if I've been changed for the better,and because I knew you,I have been changed for good."I often think about this journey my family is on.That Zoey has taken us on.I know I have been changed.Seen things.Experienced things that have changed me.Honestly,there are days when I have wondered if it indeed has been for the better.There are sights and experiences that quite frankly I would just rather erase from the recesses of my mind.In fact I unfortunately know there are surely more of those moments to come.But if I get caught up in the dark moments that have left me thinking,how did we get here,then I diminish the children and families that I have met and been inspired by.My journey over the course of the last 2 years has been complicated to say the least.My so called peer group has changed dramatically.I have evolved from a "advanced maternal age" mother,to a mother of a child with extensive special needs and now I find myself a mother with a child who has cancer.Each of those steps, each of those sub categories, has left me changed in ways I could never describe.This last place I have found myself dwelling in,a mother with a child with cancer,is the one I know for certain that has changed me the most.After our crazy day Monday,before we left CHLA,Zoey and I stopped by the 4th floor to visit our friend who shares Zoey's birthday.A magical 11 year old,also fighting AML.As the doors of the elevator opened I was immediately met by not one family I have come to love,but two.From there it spiraled.One after another.Each family,each child trying to fight their way back to normal.All the while knowing this is their new normal.It is a doubled edged sword.On one hand I am so blessed to have these families in my life but on the other, there is that cold,hard reality of what has brought us together.As I was leaving the floor I realized that I have been changed and yes for the better.Because I have known these amazing children.Their parents.I have watched them face life's biggest and by far most unfair challenge and I have marveled in the grace and dignity and sheer unconditional acceptance by which they are doing it.I have been changed for the better and I thank the courageous little ones and their equally courageous parents for their part in that.I so wish you weren't.I so wish it was in my power to change this that has been dropped at our feet with no other option but to keep moving.And finally to Tish.My dear friend who first posted this line from "Wicked" :You amaze me and astound me with your strength.Your road with Thomas has been long and arduous but you continue to walk it with such beauty and unyielding faith.Your example has allowed me to walk my walk a little straighter and a whole lot stronger.Thank you ... have indeed changed me for the better.

A few more lines from "For Good"~


I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you

Today I was reminded once again why Zoey is my hero ....

I very reluctantly stumbled,or was that rolled,myself out of bed this morning at 4am.By 5am,the birthday girl and I were heading down the 101 on our way to CHLA.Ungodly hour if you ask me but what can you do.The events of the day were complicated and emotional and have left me both physically and mentally exhausted.I will start by saying:we are home.Yep,a no go on round 4.We didn't make the numbers ... again.I think I have decided to not even say when we are going down for a round until we are actually admitted.It becomes a real build up and then a huge let down.Do not get me wrong.I love to be home.We get comfortable and regain some semblance of normal.For a few brief moments I even find myself almost believing we are past this whole ordeal but on days like today,wham,reality check.Hated that the little love started her day hours before she normally does.Hated that she had to have that darn port accessed.It hurts like you know what, I am sure.Hated that on this day,her 2nd birthday,she had to return to the very place that found her fighting for her life as a brand spanking newborn.Life hit her hard that day two years ago and today was no different.After we found that her ANC had only gone up by a nominal amount,it was decided that although her 4th round would not start as inpatient,they would go ahead with the lumbar puncture,with chemo.In addition,and this is the biggest thing that I hated,they decided to do a bone marrow biopsy to make sure she was still in remission.Yes, I used the other "R" word I dislike and I dislike it mostly because it seems to imply,in my opinion, a false sense of security. However, the "R" word they used next,that I dislike even more is:relapse.The use of that word sends shivers down my spine and causes me to want to throw up.Seriously throw up.But that was the reality of the day.They needed to make sure that there was no other underlying cause for her ANC to be dawdling the way it is, other than her bone marrow still recovering.Like for instance:nasty leukemia cells.Can I tell you how extremely stressful it was waiting HOURS for those results?Can I tell you how disappointed I was in myself that my big talk of relinquishing control became just that:big talk.I was a mess.No doubt about it.I paced.I cried.I conjured scenarios in my already,vivid imagination.I lashed out at people.By days end I had made my rounds to make apologies to 3 different people.Today I learned that I am not as "all good" with what ever happens as I profess to be.I will indeed always hit head on what comes our way,whatever comes our way.I will have plan and action but I may most assuredly, have a break down before getting there.And today I kinda had a breakdown.I tried to pray my way out of it,I really did but to be perfectly honest,it didn't help the way I had hoped.Before we even received the results I was totally and utterly disappointed in the manner,or lack there of,by which I handled things.And the end result for the little princess:still in remission.The BEST birthday present I think she could have received.Today I spent a great deal of time holding Zoey tight and talking to her.Letting her know how brave I think she is.Remembering her birth 2 years ago,as I glimpsed her ever so briefly in the delivery room,telling her I was sorry.I told her I was sorry again today.A lot.I can't fix her and I often feel solely responsible for all she has had to endure.2 years ago I could not hold her as she had a double body exchange.Yes,it is exactly what it sounds like.All of her blood taken, 10cc's at a time,replaced 10cc's at a time and then done again.Today I could hold her as she cried and cried from the pain in her little pelvis from her biopsy.Today I could hold her as she smiled once again at me through her morphine haze.Today,at the end of the day I could hold her and rock her, as she finally gave into her exhaustion,though not before I could once again tell her how very blessed I am to be her mom and how extremely brave I think she is.How extremely brave I KNOW she is.Happy birthday sweet Zoey you are my hero.Today and always.


*Pictures:Zoey with one of her favorite things, crinkly paper,courtesy of our friend and Zoey's vision therapist,Christi,who is in the blue shirt holding Zoey.Continue down for more birthday celebration pictures.