That is the concensus around here.The Needham's are all ready to head home but CHLA's 4th floor authorities have other ideas.Although Zoey's lab's are on a upward trend, we are still a few days from release.She is having a hard time keeping her red cells and her ANC is slow going but luckily her whites and platelets are cooperating.I would much rather hang tight until the doctor's are completely comfortable to release her.I do not want to leave a minute too soon only to find our way back sooner rather than later.Leaving is bittersweet to say the least.We hate this place and love this place at the same time.We walk a fine line between wanting to run away from here at record speed and conversely hanging frantically to the door jams saying "please don't make us go".But it is indeed becoming that time.Today, May the 31st marks exactly 7 months since Zoey started chemotherapy.Halloween 2008 will forever be marked with that black X.7 months of tears and fears and joys and laughter.Many conflicting emotions coexisting in a very surreal place.The world of pediatric cancer.We have met some of our dearest friends here on this journey.We have also said goodbye and still today, face saying goodbye to some of the most spectacular human beings I have ever had the privilege of knowing.So today,on a most unorthodox anniversary we recall a day when our entire world changed.Yes,for the better and yet having lost forever pieces of ourselves that we will never be able to recover.Before us lies a life of uncertainty but before us lies ... a life.Something we continue to not,for one moment,lose sight of.Zoey is a medical anomaly,defying most medical reasoning but there lies the lesson.Zoey's life cannot be measured in numbers or statistics,prognosis and percentages.Her life has truly been measured in moments and miracles.A life covered in grace and in our eyes,endless possibilities.Emotions,for me, are running at an all time high.I spent the entire drive home last night in tears.Fearing living life without chemotherapy but ready to just get to living life.Please pray for the wisdom and peace we so desperately need as we venture once again into a new normal.We will need time to decompress and readjust and for me,be ready to handle what can only be described as a Post Traumatic Stress event.It will come.I need to be armed to withstand it's force and ferocity.I can do it.I have done it.I am not ashamed to admit I am scared.But my God and my faith will rally me and today,onthis day of Pentecost,I will call on the Holy Spirit to guide me.He will.I have no doubt of that.
Sunday, May 31, 2009
Get Me Out Of Here .....
That is the concensus around here.The Needham's are all ready to head home but CHLA's 4th floor authorities have other ideas.Although Zoey's lab's are on a upward trend, we are still a few days from release.She is having a hard time keeping her red cells and her ANC is slow going but luckily her whites and platelets are cooperating.I would much rather hang tight until the doctor's are completely comfortable to release her.I do not want to leave a minute too soon only to find our way back sooner rather than later.Leaving is bittersweet to say the least.We hate this place and love this place at the same time.We walk a fine line between wanting to run away from here at record speed and conversely hanging frantically to the door jams saying "please don't make us go".But it is indeed becoming that time.Today, May the 31st marks exactly 7 months since Zoey started chemotherapy.Halloween 2008 will forever be marked with that black X.7 months of tears and fears and joys and laughter.Many conflicting emotions coexisting in a very surreal place.The world of pediatric cancer.We have met some of our dearest friends here on this journey.We have also said goodbye and still today, face saying goodbye to some of the most spectacular human beings I have ever had the privilege of knowing.So today,on a most unorthodox anniversary we recall a day when our entire world changed.Yes,for the better and yet having lost forever pieces of ourselves that we will never be able to recover.Before us lies a life of uncertainty but before us lies ... a life.Something we continue to not,for one moment,lose sight of.Zoey is a medical anomaly,defying most medical reasoning but there lies the lesson.Zoey's life cannot be measured in numbers or statistics,prognosis and percentages.Her life has truly been measured in moments and miracles.A life covered in grace and in our eyes,endless possibilities.Emotions,for me, are running at an all time high.I spent the entire drive home last night in tears.Fearing living life without chemotherapy but ready to just get to living life.Please pray for the wisdom and peace we so desperately need as we venture once again into a new normal.We will need time to decompress and readjust and for me,be ready to handle what can only be described as a Post Traumatic Stress event.It will come.I need to be armed to withstand it's force and ferocity.I can do it.I have done it.I am not ashamed to admit I am scared.But my God and my faith will rally me and today,onthis day of Pentecost,I will call on the Holy Spirit to guide me.He will.I have no doubt of that.
Wednesday, May 27, 2009
Time ....
... it seems to being going at warp speed.Hard to believe, when life primarily consists of sitting,sitting and sitting some more,in a hospital room all day long.We are rapidly approaching the 4 week mark inpatient.They said 4-6 weeks and I guess they knew what they were talking about once again.My mind is spinning.I am pulled in so many different directions.I sit to blog and I have a million different topics I want to address but do not have the time,space or ability to sort them out,to make any sense.I have unanswered emails.Beautiful comments left here to reply to.High school graduation to prepare for.New grand baby to make way for.Friendships neglected.Relationships in need of repair.5 other children who need me on vastly different levels and oh yeah,a husband,that come Saturday,I will have been married to for 22 years.And ... I have only scratched the surface here folks.Conclusion:I am running on fumes.Light vapors barely sustaining me.But,I flip that autopilot switch on daily and go.Hoping and praying that I can put off hitting that wall that I KNOW looms somewhere in the not so distant future.So tonight,instead of touching on one of the aforementioned topics,I am choosing to avoid and just post once again on Miss Zoey.She seems the least complicated of choices right now,believe it or not.What has Wednesday brought us?Number one,a VERY pale Zoey.I mean seriously pale.Can you say,transfusion?Yes that will be on the agenda tomorrow.Platelets lower but leveling off hopefully and white count is up by a little.Still no ANC and still probably going to fake us out with an increase than decrease than increase,over the next few days.The good thing is that they have decided to draw labs daily so we can watch for trends.Zoey's spirits are the best that I have seen in days and days.She is charming the masses at CHLA and she keeps me smiling absolutely nonstop.Speaking of stop,I better stop now.Tired and sore from my evening runs and still,at 12:30 am,a few more things to be done around here.Prayers for an increase in numbers tomorrow please,as I am going stir crazy in 409B and so want to bring my baby home.Where she belongs.
*We have been so very blessed to have met not one,not two,not three but FOUR of our blogging buddies.First there was the very handsome Reid.Let me tell you,that boy is to die for.Then came our buddy Jax and his amazing family.Lacey and Ray are two incredible parents and as we sat on the floor that day I so wished they lived closer.A little over a week ago it was the darling Preslie and crew.Who,we felt in an absolute instant, as if we had known them forever.A side note shhh, don't tell anyone but they could possibly be moving here.Can you believe that?Jax and his family are talking about that as well ... how lucky would I be?Last but not least is the sweet Ella Grace and her equally sweet mom Denise who came up yesterday.Ella was born with the same transient leukemia as Zoey and the wacky world of blogging brought us together.Is that not amazing.These families took time out of their days,fought traffic,altered their family trips,after very long days on the road and still found their way down to CHLA to spend time with us.I cannot begin to tell you how much all of these families and their beautiful children have come to mean to us.Thank you is insufficient.We love you all.
Tuesday, May 26, 2009
Briefly ....
Things remain about the same with Miss Zoey.Her labs show little change,which is actually good.The last three weeks has yielded a steady decline of platelets and red blood cells,both necessitating multiple transfusions but we might and this is a cautious might,we might, have leveled off.Zoey's platelets have only gone down by 4 thousand in three days and that is huge in my book.Usually they take a massive hit but this minimal decrease could be a sign that her marrow is going to kick it up a bit.Could be but ... we will wait and see.Speculation is futile in this numbers game.One thing for certain is that she has been extremely happy and giggly and chatty and so much fun.She appears from the outside,to be feeling better than I have seen her feel in a very long time.Please pray that she will be on an upswing here sooner rather than later.That is all tonight.I got home at about 10:15,took by obligatory 2 mile run,cleaned up,picked up,did some laundry and now ... bed.Thank you to all of you for your support of me in my latest endevour.So many incredible comments.Incredibly beautiful comments.Next week on the agenda ... fundraising ideas.Yuck ... but has to be done.
Saturday, May 23, 2009
"For we walk by faith,not by sight"~ 2 Corinthinas 5:7
In my case,for tonight's purpose only,I am going to switch out walk in this verse, with ... run. Because you see, my little excursion this morning was all about that .... running.Those who know me,know,I use to love to run.Some people hate running but not me.I have always found strapping on my ipod and hitting the road, therapeutic and freeing.However,over the last 2 years there has been no time at all,not even a moment, for running or for that matter,any exercising,period.And I have missed it.So for a girl who seldom does anything half way, I am jumping in,head first or should I say feet first and began,this morning,training for a marathon.Specifically the Nike Women's Marathon.By my side or more than likely,way out in front of me, will be my amazing daughter Jessica.As you may or may not know,Jess ran her first marathon last year as part of Team In Training. Her baby sister Zoey being her personal inspiration.At that time, Zoey's TMD seemed enough to qualify her as a survivor,at the tender age of 14 months.Little could we have known,back then, that today, May the 23rd 2009,Zoey would be knee deep,fully immersed in the fight of her life with AML.Jess continued running this past year,even becoming a mentor and running coach with Team in Training.With the LA Marathon preparations coming to a close on Monday,Jessica has decided to once again become a full fledged participant and set her sight on the Nike Women's Marathon.A marathon that has solely benefited the Leukemia and Lymphoma Society for the last six years.I have been toying with the idea of running it myself for the last few weeks.I haven't discussed it with anyone.Just asked Jess a few questions and then,last night at around 10pm,decided why not?Right now might be the very best time.My inspiration comes not only from watching my daughter fight for her life,battling this horrific disease over the last 7 months but my inspiration comes also from seeing first hand the embodiment of true courage in the fight of countless others,just like her.Today after coming home and showering I did not question my decision or my ability to do this.Not one little bit.Instead I will rally my body and spirit,push myself to my limits strictly because ... I am able.I am healthy.I am strong.I am called to do something and this seems like a great place to start.The biggest challenge I see is the fundraising aspect.It is a requirement to participate.A big chunk of money but the cause it goes towards,all well worth it.I am very poor at asking of others.Monetarily especially and especially in these tough times.Jess and I have some joint money raising ideas.Some I will be doing here.All that I am excited about.Soon we will have our own page set up for people to visit,see how our efforts are going and if they like,to donate.I am called.No, am actually required and expected to give back and this is a start.I am truly excited.Not nervous but truly excited.There are some wonderful things planned over the next few months.I cant' wait to share it all with you as it comes.This all feels hopeful and purposeful at a time when very little feels purposeful.I hope you will all stick with us on this next journey.The day we leave CHLA certainly won't be the end.It will actually be the beginning and this,this is an awesome start.I can't promise that each week I will feel as upbeat.I am sure there will be moments where I will say,what the heck and who the heck do I think I am ?Old,out of shape and busy.Seriously busy.But in those moments I will look at Zoey and all of her friends and say,I will do this.I will succeed.I will because I am able.I will because they do.They will carry me when I am tired and they will whisper ever so gently to me,don't worry,you can do this,we are right here with you,propelling your heart because we now dwell there with you.Thank you my 4th floor wings.You will not only help me to run.... you will enable me to fly.
Friday, May 22, 2009
Another Day with My Little Love ......
Oh sweet Zoey.They were not lying when they said this last round was going to be a doozy.Two platelet transfusions,two blood transfusions,all in less than 3 weeks and still ... low platelets and low hemoglobin.Tired little love,don't these picture say it all?Zoey and I love hanging out on our bench.Not much room but we make it work.She rolls a bit.Sits in the window sill and has a view of the comings and goings of everyone.We are content and enjoy each and every moment of our time together.Giggles and laughs and book reading and lately she just rolls off my lap and falls asleep on the bench with the sun hitting her precious face.I just sit there and study her perfect face.This morning,as evident by the pictures,she was totally worn out.By days end she was much more like herself and freely giving out smiles and kisses.We continue to do the numbers waiting game.Could not even begin to speculate as to when we will be sprung.Until then we make the most of our days.Cherishing them,surrounded by our beautiful friends and loving nurses,that have become family.In a strange,inexplicable way,I will miss my daily routine on the 4th floor when it is our time to go.I love it there and at the same time, hate it there.Speaking of there,Mark is doing his Friday to Sunday morning gig there.Tomorrow he will be kept company by his good friend Jose.Jose has come a number of times over the last several months and hung out with Mark and Zoey.Makes all the difference in passing the time there.We love you for your friendship Jose and thank you for loving us.And me,well tomorrow I am getting up early and embarking on something that will either be being done at the absolute worst timing or the absolutely perfect timing.I'm hoping for the latter.Are you curious?Come back tomorrow and I will let you in on it.Keep the prayers for the 4th floor warriors coming.I wish you all could meet these kids.You would be changed forever.I know I am.
Wednesday, May 20, 2009
"In the dark dreary nights, when the storm is at its most fierce, the lighthouse burns bright so the sailors can find their way home again. In life the same light burns. This light is fueled with love, faith, and hope. And through life's most fierce storms these three burn their brightest so we also can find our way home again."
~Author Unknown.
Ever facing forward,doing my very best to fix my gaze upon that beacon,who's glow can often vacillate dramatically between a glimmer and a blinding light and regardless of circumstances that surrounds us daily,it still shines.
Zoey seems to be feeling a bit better.Three major antibiotics will tend to do that when infection is dragging you down.In her case,that darn g-tube is the culprit.That g-tube looks one thousand percent better and for Zoey's comfort,we are very grateful for that.She did go up ever so slightly in her white count,.22, but we tend to not get too overly excited about that as Zoey has been known to take a few steps forward and like 10 back, in a very short period of time.We will however, have a better idea when Friday's labs come.Zoey's disposition is wonderful and she continues to plug along with very few major issues.We are forever grateful for that and know,on the 4th floor, this is a rarity and a blessing.Love to you all and thank you for your steadfast friendship and your faith filled prayers.We are lifted and carried by them all daily.Prayers please, especially also for Sol Merie,Pablo,Madison,Kai,Sarah,Justine,Jaden,Ricca and Klein.Warriors of the fiercest kind.All of them.
Tuesday, May 19, 2009
Fatigue once again, wins ....
Lots to report but just do not have the energy to report them.Instead,I will keep it as brief and as simple as I possibly can and then I HAVE to get to bed.On my nights home I am never in bed before 1am and tonight, I just have to try and make it happen.Thankfully I function well on very little sleep or I would be in some really serious trouble by now.Especially after the last 2 years.I feel it beginning to take a toll on me though and I definitely can SEE it catching up with me.The mirror does not lie and oh how I wish it did!Enough of that though,first up instead,Miss Zoey ... little stinker.Or "trickster" as our roommate Jayden's mom calls her.Lulls you into thinking she is going to do one thing and then she changes it up and does another.Just making sure we are paying attention I am convinced of that and wants to make sure we are not getting too comfy on our hospital issued cot/bed/bench,as not to miss any of her antics.Last night,2:15 am and I am awoken to coughing,gagging,retching from Zoey's bed.I fly up only to find her throwing up,or at least trying to and also,just by feel,can tell she is on fire.Thus the reason for throwing up.Fevers do that to her.From there we scramble a bit to asses things and then,finally, the big gun antibiotics come out.Poor love.She felt like garbage and looked about the same.We checked out her g-tube,which had been heading south over the last few days and we see it was REALLY,REALLY not looking good.She was already on a fairly decent antibiotic but it obviously was no match for a girl with a white count of .12!!! I don't even think that counts as a white count actually.The g-tube site was nasty looking and bleeding,which was lovely but by the end of today it was looking better.Zoey's platelets went under 5 again and with the g-tube bleeding and bruising and risk for internal bleeding,she received another transfusion of platelets.That makes 2 in less than a week which has never happened before and only proves the strength of this round.Zoey's marrow is spent.Hit hard and not finding it easy to recover.Mark called a few hours ago and she was spiking a fever again but hopefully it will settle back down and she will be able to get some sleep tonight. She is so tired, the little love but at the same time, so very charming and silly and loving and forgiving.She never,ever ceases to amaze.I have to abruptly end this.Joe has woken up and I am literally falling asleep between words.I leave you with a few pictures of my handsome guy Jake on his First Holy Communion.I will post more on that tomorrow as well as our wonderful visit with precious Preslie and her mom and dad.I forgot my camera but Mark downloaded from Michelle's camera onto his computer their photos, so I will post more on that as well.Till then pray for Zoey Grace.They were not lying when they said this round was going to be a battle.On the whole though,I can tell you, she is fairing far better than most on that floor and with that said ,please pray for those amazing children as well,please.
* Zoey was in a non picture taking mood today so ...these are about as good as it gets.As for Jake,do you see this face.This face is truly so angelic and sweet and kind hearted and loving.You can just see it so very clearly in his expressions and his body language.So proud of him.So very proud.
Friday, May 15, 2009
A Girl and Her Daddy ....
Pictures speak louder than any words I could add.Suffice it to say,this child absolutely adores her daddy.As for Mark,he absolutely adores this child.This child of mine continued to be worn out and cranky and irritable most of the day.She received a transfusion this afternoon and I am so hoping by tomorrow the spunk will have returned.Platelets went down again.She is at 26,000,normal is 140,000-250,00 but we will hold off transfusing her unless she has active bleeding again and as for her white count .... it is at .3,and for those who might be wondering what a normal count should be well,it should be around 6.0-11.00.Zoey barely hits a range of ... any!!Scary ,as white blood cells are what helps you fight infection.Blood draws are on a Monday,Wednesday,Friday schedule and I am hoping by Monday that she will have zeroed out and will have only one way to go and that is up.And up means one step closer to home.It will probably take some time.Maybe another 2 weeks before home will be on the horizon.I learned today that although all her other rounds of chemo were 1/3 less than a typical child's would have been,this round was the FULL shabang.The previous rounds were a bit less due to the highly sensitive little bodies of children with Down syndrome and their ability to withstand not the leukemia but rather the chemotherapy itself.The last round they want to hit them extremely hard to hopefully ensure the eradication of any nasty abnormal cells.No wonder my baby is tuckered out.Lots going on this weekend on the home front.Jake will have his First Communion on Sunday and tomorrow night we will finally be meeting little Preslie and her family, as they are out here to hit Disneyland and San Diego.I am so excited and will post pictures for sure.That is all for now.Lots more to say but exhaustion has the upper hand once again.Prayers for our little love this next week as she is highly susceptible to infection right now.We are so praying she misses the big gun antibiotics in yet another round.Virtually unheard of on our floor but another amazing example of Miss Zoey and the beauty of her courage,resiliency and grace.
Thursday, May 14, 2009
Finding Our Way ...
The days are going at warp speed in some moments and in other moments so very painfully slow.Painful to my heart mostly.I find myself frantically trying to "fix" everyone.Comfort everyone.Bring joy to everyone.Much to my dismay I fail on all fronts.Seriously,who the heck do I think I am?Egotisticly thinking am able to take this away from everyone,be it a parent or most especially a patient,hardly.But I continue to try because I quite frankly do not know what else to do.The stories on the 4th seem to be converging in a strange circular kind of way.Zoey and I are surrounded by some of our very favorite people up there.Each one,battling and fighting and battling some more.These children and their families are my hero's.My courage.My strength.They bless me and remind me of purpose and plan.And since fixing and repairing and waving my magic wand seem to be futile .... I pray instead.As I leave CHLA on my nights off,I barely make it out of the parking garage before I break down.I manage to keep it together and run on autopilot most all day long but as soon as I am alone ... it is all over.The events of the day are replayed over and over in my head and my helplessness and inability to fix this "thing" for everyone is absolutely overpowering.So I pray and that is all that seems to work.And then I pray some more.I will continue that tactic, as it seems to yield far better results than my superwoman complex could ever accomplish.I was reminded by a sweet friend's email tonight,to not spread myself too thin.I fear that is advice that comes a bit too late.I am not merely thin,I am paper thin.Only mode I tend operate in.To my friend,thank you for being just that ... my friend.I am lost without that support.Pray for my little love,her warrior friends and perhaps,for good measure,one for me.I am on the edge ... again and I would prefer to not have to use my wings.The arms are tired once more and the mind is mush and the heart is heavy.I am needing to dig into my reserves to sustain me for the duration and it is absolutely,positively exhausting.Speaking of which,12:45 am .... time for me to turn in.Thank you once again for your steadfast friendships and your loving prayers.all of which never go unnoticed.
* Miss Zoey is TIRED.Tired but darn cute.Her white is .3 folks which is well,practically zero and not conducive to fighting off infection.Her platelets are getting eaten up again, even after the transfusion and her ANC is so low that they can't even calculate it.This is all expected and expected is manageable.Manageable I can handle,it is the unexpected that I just can't handle in my fragile state.Not the most flattering pictures of Miss Z,she was busy looking everywhere except the camera but this picture is more about her two buddies rather than her.Zoey's two friends in the picture are Jayden,our round 3 roommate and as luck would have it, our roommate now as well.We couldn't be happier.The other sweet child is 10 year old Klein.Klein is one of those old souls with the most caring and compassionate hearts.Klein is in need of some serious,serious prayers.His road has been hard already and his journey is nowhere close to being over.Pray hard for this guy.He is remarkable.Truly remarkable.
Monday, May 11, 2009
The Day after Mother's Day ....
Yesterday, when I posted "Invisible Woman"I just knew it would so not be applicable to some of my incredible blog friends.Friends, who's journeys were far more complex than feeling simply invisible.You see,I find I have my foot in the doorway of two worlds these days.Much like many of you who come here daily and still yet,there are others who come here,who spend the majority of their days strictly relating to and living in only one of these worlds.For me,one world finds me trying to do my best in the role of a blessed mother of 5 typical children,while the other world finds me equally blessed but often not so gracefully trying to navigate my way through as the mother of the amazing Miss Zoey.On some days these worlds seem to be complete polar opposites.Yes,they are of course filled with joyous similarities but simultaneously they are also filled with glaring incongruities.Tonight I found the following on a dear far,far away friends blog.It spoke all the things I wished to say to accompany "Invisible Woman" but lacked the eloquence to speak them.Thank you Claudia for posting this.Claudia and I started commenting and corresponding over a year ago.We have tried to support each other consistently over that time and I feel often ,that I have failed to give to her all I have wished, to ease her hearbreaking journey.I have at the very least, tried.In the end,regardless of our separation by a very large body of water,I hope she knows I love her and feel honored to have been welcomed and embraced into her private and personal journey.Before you read on,an update on Zoey which really amounts to not a whole lot of an update.I forgot my camera the last few days,so no pictures.If there were you would possibly mistake her for Casper.Yes,that familiar transparency has over taken her darling face.No transfusion yet.She did however receive platelets.Poor babies lips started bleeding badly.She almost look as if she had permanent ruby colored lipstick on.Sad and not so pretty.Other than that she continues to find her way.As do I.I am struggling this round but I leave that for another post.Keep those prayers coming please.
Thoughts of a Mom
By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers.We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.But we, sisters, we keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses, and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
Thoughts of a Mom
By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers.We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.But we, sisters, we keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses, and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
Saturday, May 9, 2009
The Invisible Woman ....
"It all began to make sense, the blank stares, the lack of response, the
way one of the kids will walk into the room while I’m on the phone and
ask to be taken to the store.
Inside I’m thinking, “Can’t you see I’m on the phone?”
Obviously not. No one can see if I’m on the phone, or cooking, or
sweeping the floor, or even standing on my head in the corner, because
no one can see me at all. I’m invisible.
Some days I am only a pair of hands, nothing more: Can you fix this?
Can you tie this? Can you open this? Some days I’m not a pair of hands;
I’m not even a human being. I’m a clock to ask, “What time is it?” I’m
a satellite guide to answer, “What number is the Disney Channel?” I’m a
car to order, “Pick me up right around 5:30, please.”
I was certain that these were the hands that once held books and the
eyes that studied history and the mind that graduated summa cum laude
– but now they had disappeared into the peanut butter, never to be
seen again.
She’s going … she’s going … she’s gone!
One night, a group of us were having dinner, celebrating the return of
a friend from England. Janice had just gotten back from a fabulous
trip, and she was going on and on about the hotel she stayed in. I was
sitting there, looking around at the others all put together so well.
It was hard not to compare and feel sorry for myself as I looked down
at my out-of-style dress; it was the only thing I could find that was
clean. My unwashed hair was pulled up in a banana clip and I was afraid
I could actually smell peanut butter in it. I was feeling pretty
pathetic, when Janice turned to me with a beautifully wrapped package,
and said, “I brought you this.”
It was a book on the great cathedrals of Europe. I wasn’t exactly sure
why she’d given it to me until I read her inscription: “To Charlotte,
with admiration for the greatness of what you are building when no one
sees.”
In the days ahead I would read — no, devour — the book. And I would
discover what would become for me, four life-changing truths, after
which I could pattern my work: No one can say who built the great
cathedrals– we have no record of their names. These builders gave
their whole lives for a work they would never see finished. They made
great sacrifices and expected no credit. The passion of their building
was fueled by their faith that the eyes of God saw everything.
A legendary story in the book told of a rich man who came to visit the
cathedral while it was being built, and he saw a workman carving a tiny
bird on the inside of a beam. He was puzzled and asked the man, “Why
are you spending so much time carving that bird into a beam that will
be covered by the roof? No one will ever see it.” And the workman
replied, “Because God sees.”
I closed the book, feeling the missing piece fall into place. It was
almost as if I heard God whispering to me, “I see you, Charlotte. I see
the sacrifices you make every day, even when no one around you does. No
act of kindness you’ve done, no sequin you’ve sewn on, no cupcake
you’ve baked, is too small for me to notice and smile over. You are
building a great cathedral, but you can’t see right now what it will become.”
At times, my invisibility feels like an affliction. But it is not a
disease that is erasing my life. It is the cure for the disease of my
own self-centeredness. It is the antidote to my strong, stubborn pride.
I keep the right perspective when I see myself as a great builder. As
one of the people who show up at a job that they will never see
finished, to work on something that their name will never be on. The
writer of the book went so far as to say that no cathedrals could ever
be built in our lifetime because there are so few people willing to
sacrifice to that degree.
When I really think about it, I don’t want my son to tell the friend
he’s bringing home from college for Thanksgiving, “My mom gets up at 4
in the morning and bakes homemade pies, and then she hand-bastes a
turkey for three hours and presses all the linens for the table.” That
would mean I’d built a shrine or a monument to myself. I just want him
to want to come home. And then, if there is anything more to say to his
friend, to add, “You’re gonna love it there.”
As mothers, we are building great cathedrals. We cannot be seen if
we’re doing it right. And one day, it is very possible that the world
will marvel, not only at what we have built, but at the beauty that has
been added to the world by the sacrifices of invisible women."
This is an excerpt from a book called "The Invisible Woman".This was given to me, at a time last spring, when I was busy building walls and was reminded by a dear friend that what I really should be focusing on was the beautiful Cathedrals I was building.I so needed that reminder that day.I continue to need that nudge from time to time.I send it lovingly, once again, to all of you mom's who come here daily.Remind yourselves often of the great works you are doing each and everyday.I want to also acknowledge those that come here and find that this excerpt doesn't even come close to mirroring your life and what goes on in it on a daily basis.I understand that as well.You all inspire me at a time when I know you would rather not.You would much rather just have a normal,whatever that is, run of the mill, carpooling mom life.I get that as well.I truly do.I wear a lot of different hats as a mom nowadays and soon will don a new hat ...a grandmother.It is often difficult to distinguish which one to put on from time to time but the bottom line for me is that,regardless of the specifics of my life as mom and the daily ebb and flow of that job,I am truly doing what I have always aspired to be doing.How incredibly blessed am I?Enjoy your day ladies.Take in,savor and cherish those cathedrals you are building.
way one of the kids will walk into the room while I’m on the phone and
ask to be taken to the store.
Inside I’m thinking, “Can’t you see I’m on the phone?”
Obviously not. No one can see if I’m on the phone, or cooking, or
sweeping the floor, or even standing on my head in the corner, because
no one can see me at all. I’m invisible.
Some days I am only a pair of hands, nothing more: Can you fix this?
Can you tie this? Can you open this? Some days I’m not a pair of hands;
I’m not even a human being. I’m a clock to ask, “What time is it?” I’m
a satellite guide to answer, “What number is the Disney Channel?” I’m a
car to order, “Pick me up right around 5:30, please.”
I was certain that these were the hands that once held books and the
eyes that studied history and the mind that graduated summa cum laude
– but now they had disappeared into the peanut butter, never to be
seen again.
She’s going … she’s going … she’s gone!
One night, a group of us were having dinner, celebrating the return of
a friend from England. Janice had just gotten back from a fabulous
trip, and she was going on and on about the hotel she stayed in. I was
sitting there, looking around at the others all put together so well.
It was hard not to compare and feel sorry for myself as I looked down
at my out-of-style dress; it was the only thing I could find that was
clean. My unwashed hair was pulled up in a banana clip and I was afraid
I could actually smell peanut butter in it. I was feeling pretty
pathetic, when Janice turned to me with a beautifully wrapped package,
and said, “I brought you this.”
It was a book on the great cathedrals of Europe. I wasn’t exactly sure
why she’d given it to me until I read her inscription: “To Charlotte,
with admiration for the greatness of what you are building when no one
sees.”
In the days ahead I would read — no, devour — the book. And I would
discover what would become for me, four life-changing truths, after
which I could pattern my work: No one can say who built the great
cathedrals– we have no record of their names. These builders gave
their whole lives for a work they would never see finished. They made
great sacrifices and expected no credit. The passion of their building
was fueled by their faith that the eyes of God saw everything.
A legendary story in the book told of a rich man who came to visit the
cathedral while it was being built, and he saw a workman carving a tiny
bird on the inside of a beam. He was puzzled and asked the man, “Why
are you spending so much time carving that bird into a beam that will
be covered by the roof? No one will ever see it.” And the workman
replied, “Because God sees.”
I closed the book, feeling the missing piece fall into place. It was
almost as if I heard God whispering to me, “I see you, Charlotte. I see
the sacrifices you make every day, even when no one around you does. No
act of kindness you’ve done, no sequin you’ve sewn on, no cupcake
you’ve baked, is too small for me to notice and smile over. You are
building a great cathedral, but you can’t see right now what it will become.”
At times, my invisibility feels like an affliction. But it is not a
disease that is erasing my life. It is the cure for the disease of my
own self-centeredness. It is the antidote to my strong, stubborn pride.
I keep the right perspective when I see myself as a great builder. As
one of the people who show up at a job that they will never see
finished, to work on something that their name will never be on. The
writer of the book went so far as to say that no cathedrals could ever
be built in our lifetime because there are so few people willing to
sacrifice to that degree.
When I really think about it, I don’t want my son to tell the friend
he’s bringing home from college for Thanksgiving, “My mom gets up at 4
in the morning and bakes homemade pies, and then she hand-bastes a
turkey for three hours and presses all the linens for the table.” That
would mean I’d built a shrine or a monument to myself. I just want him
to want to come home. And then, if there is anything more to say to his
friend, to add, “You’re gonna love it there.”
As mothers, we are building great cathedrals. We cannot be seen if
we’re doing it right. And one day, it is very possible that the world
will marvel, not only at what we have built, but at the beauty that has
been added to the world by the sacrifices of invisible women."
This is an excerpt from a book called "The Invisible Woman".This was given to me, at a time last spring, when I was busy building walls and was reminded by a dear friend that what I really should be focusing on was the beautiful Cathedrals I was building.I so needed that reminder that day.I continue to need that nudge from time to time.I send it lovingly, once again, to all of you mom's who come here daily.Remind yourselves often of the great works you are doing each and everyday.I want to also acknowledge those that come here and find that this excerpt doesn't even come close to mirroring your life and what goes on in it on a daily basis.I understand that as well.You all inspire me at a time when I know you would rather not.You would much rather just have a normal,whatever that is, run of the mill, carpooling mom life.I get that as well.I truly do.I wear a lot of different hats as a mom nowadays and soon will don a new hat ...a grandmother.It is often difficult to distinguish which one to put on from time to time but the bottom line for me is that,regardless of the specifics of my life as mom and the daily ebb and flow of that job,I am truly doing what I have always aspired to be doing.How incredibly blessed am I?Enjoy your day ladies.Take in,savor and cherish those cathedrals you are building.
~So much sorrow and pain
Still I will not live in vain
Like good questions never asked
Is wisdom wasted on the past
Only by the grace of God go I
~Ben Harper~musician-songwriter (from the song"Blessed to be a Witness")
There is not often a day that goes by on the 4th floor, that I do not recognize and remind myself how incredibly blessed I am.Today was no different.Today, was a difficult day for me on an emotional level.These kinds of days take more of a toll on me then the physically taxing ones.The journeys of others weigh heavy on my heart and leave me feeling helpless but never hopeless.Instead they force me to continue to be ever prayerful and mindful that miracles do indeed occur each day.At the end of each day I find myself asking and sometimes begging,which is not beneath me,begging for miracles for some of these children that I have come to love with every fiber of my being.
Zoey,our little love, is doing her Zoey thing.Knocking this out in true Zoey fashion.The first few days,primarily yesterday was a doozy but by evening our little Zoey had reemerged.So much so that she decided to party into the night until 1am!Yes,wide awake and full of it.We have a darling roommate,Justine.Justine is a soon to be 8th grade graduate but AML has decided to side track her for awhile.She is beautiful and sweet and Zoey is in love with her.Justine is a night owl,2 am being her average time to turn in and last night Zoey decided to join her.Very cute the two of them.Justine and her mom spoil me with food and water and great conversation and again, if not for the journey of cancer I would never have had the opportunity to meet this incredible family.Do not get me wrong,I do wish however that Justine was instead at school where she really belongs.Soon Justine.Soon.Well,we wait now.Zoey's counts are plummeting.She has almost no white count already and her platelets are very low.Transfusions are on the horizon.She is very tired and as I was reminded by the attending today,this road is extremely difficult on these kids and fatigue is to be expected.We continue to stand in amazement of Zoey's strength and resiliency.Superhuman at moments and defying explanation most all of the time.The finish line seemed so out of reach last October and now it is within eyesight.Please keep those prayers coming.This last leg is apt to continue to challenge her and she will need to call on whatever reserves she has hiding to see her to the end.Thank you for your steadfast support through your loving comments and emails.They are our reserves and will see us to the end as well.
*Last bottle of chemo ... finished ... done ...completed.Being taken down by our favorite nurse Laura at 8am yesterday.Loved the two pictures of Zoey, who spotted our family picture and worked tirelessly and eventually conquered, tearing it down.And then,my tired love ...
One last story:At 9 o'clock each night, 3 of our fellow AML warriors, make the end of the night announcements that visiting hours are now over.They patiently take turns,each repeating the same little shpeel and at the end,in each of their magical little voices they say:"And goodnight Zoey"It is the sweetest thing,followed by Zoey and I heading to the door where she blows them her loving gentle kisses.That is what this floor is about you guys ... that is the incentive behind my steadfast prayers each and every evening for God to send his grace and healing love to all of these courageous children.
Monday, May 4, 2009
Peace ....
I thought perhaps, when this day arrived, I would spend time in deep reflection on the journey of the past 7 months.I thought perhaps I would speak of the future and the uncertainty that it most surely holds.And I definitely thought, when today arrived, I would be filled with some degree of trepidation,anxiety and fear.Instead I feel peace.Complete peace.Peace ... that intangible feeling that I so often have yearned for over the course of the last 2 years.Tonight it is here and I am so grateful for it.We begin tomorrow knowing that we have done everything humanly possible to get to this day.....Zoey's final admission for chemotherapy.We are here and more importantly, Zoey is here and we are blessed and yes,we are better because of these days we have traveled.No matter what lies ahead we now know we are stronger and more capable then we could have ever imagined.To my husband and my children ...I am so proud of you all for the grace with which you have carried yourselves and the burdens you have so unflinchingly and unselfishly,carried.To my friends and extended family ... who have stepped up and sacrificed their family time and days off and down time to care for my little guys,a thank you is so insufficient.To my Camarillo community and beyond ... who have rallied behind us with fundraisers and gift cards and presents at our doorstep,we are humbled.To all of you in blogland ... who have reached out and supported us in prayer and words of encouragement ... you have enriched our lives in ways you will never,ever know.And finally, to my littlest love Zoey,my angel girl,my hero ...you are a gift that I am unworthy to have been bestowed with.You have endured more than any child should ever have to but you show me daily the true meaning of strength and courage and forgiveness.You light up my life and bring a joy unparalleled, with your infectious smile and your unconditional love.Our wish for you is that God continues to shine His amazing grace upon you.That He lift you in the days ahead and heal your tiny body so that we once again can declare ... been there,done that and conquered that fully and completely.Just before I put Zoey down tonight,I whispered in her ear how much I loved her,how hopeful I am for her future and how together, we will walk the rest of our days,hand in hand as I show her the beauty of this world and while doing just that, she is sure to show me more than I could possibly ever show her.I kissed her,signed I loved her,to her and as always she flashed that trademark smile at me.I will never know how much Zoey truly understands but I do know this much .. she certainly feels how much I love her and in her own magical way she tells me just how much she loves me.That will always be enough.What more could I possibly ask for.Forward on Miss Zoey Grace,tomorrow comes.
*This darling shirt that Zoey is wearing came from a blog friend.Is it not the cutest?I had a hard time getting a good shot of Zoey so you can read the words so let me tell you what it says:"It is all in my genes baby!"I think it is so very appropriate because I totally and completely feel that,for what some deem as an imperfection,that very same gene has enabled Zoey to be the innate fighter that she is.She is perfect,in every sense of the word ... the wings just solidify that!.Thank you Maryjane and mommy.We know it was a bit of a hassle in getting it to us but it was so worth the wait!
Saturday, May 2, 2009
The Day was Absolutely Beautiful ....
Not only was the weather perfect today but the beauty I felt as I watched the day play out before me,was nothing short of perfect.Jessica Leigh,our first born,graduated from college today.22 years ago we knew that this day would come,we hoped and prayed that this day would come and indeed it came.Too fast in many ways but how blessed we are to be here.We are filled with more gratitude for this blessing then we might ever have had because of the road we now take with Zoey.Today we are surrounded by families and children who may never have this opportunity.An opportunity and right of passage,that many of us take for granted.Once more a lesson coming from the journeys of some courageous children and their families.We are so proud of you Jess.You have grown into this incredible young woman that amazes us and inspires us daily.Congratulations our oldest love.We adore you beyond any words we could possibly come up with.And to Matt ... we thank you for loving and taking such great care of Jessica.We love you for that and for so much more.Enjoy the pictures everyone.Notice the back drop.That is the Pacific Ocean and Pepperdine University literally overlooks and practically sits on the edge of the ocean.Breathtaking.However,one of the most touching parts of the ceremony today, was when the President of the University said something along these lines,when addressing the Class of 2009:"Today as you all gaze out over my shoulders at the incredible view behind me,the beautiful Pacific Ocean,believe me,it pales in comparison to the beautiful view that sits before me today."I couldn't have agreed more.
*Once again,the only thing missing from the perfect day, was our littlest love Zoey.From a medical standpoint, it was best to leave her home.She was well taken care of by my friend Debra.Thank you Deb for sitting with her.It was so difficult to not have her with us but we know she was being loved on and snuggled with and that made all the difference.Zoey seems to be doing well and we are cherishing our days knowing Tuesday will be here before we know it.
*Be sure to scroll done for more pictures.
Friday, May 1, 2009
Home Sweet Home ....
Arrived home last evening.Glad to be home but filled with a bit of apprehension.We have never come home knowing she will bottom out while here.They warn you that by the time you are ready to head back 5 days later,you will certainly see in your child the effects.Hemoglobin will have drastically fallen along with platelets,white and red.All resulting in an over all lethargic feeling for Zoey.Coupled with that will be the drop in her ANC.Her ANC rose from 780 to 2600.The reason being,is that it is her bodies stress response to the onslaught of chemo.Similar to what happens when the body is trying to fight infection.The good thing is that she had neutrophils ready to pop from her bone marrow in a protection of sorts,from her chemo.We have to be vigilant in watching for fevers and if we are going to see them it may be as we head closer to the five days home.If she spikes then we go straight to the Emergency Department at CHLA.Scary place these days.Most you see there are masked due to the Swine Flu outbreak.85% of the population that CHLA provides services to,is Hispanic.With the influx of not only patients but visitors as well,there is a very real concern of a Swine Flu outbreak there.Actually,it is only a matter of time.We so hope Zoey can stay fever free until she is admitted on Tuesday.Yesterday was a difficult day for the little love.She spent the majority of the day throwing up.This round they gave her a 24 hour bolus of her anti-nausea medication and it really was the wrong choice for her.Every other round we have kept her on smaller doses around the clock.Next week we certainly will not make that mistake.Poor baby.We finally had to give her a dose of Benedryl to knock her out and give her some relief.By the time we headed home she was a world better.We continued to wake her for her eye drops at home but will discontinue that this morning.Today she woke with that trademark Zoey smile and we are glad to see that back.Tomorrow Jessica and Matt graduate from Pepperdine.Hard to believe.Four years flew by.Zoey will not be going to graduation,even with it being outdoors.Too risky.I have two friends that will be coming to sit with her for a few hours and all I need to do is give them a crash course in G-Tube feeding.To us it is second nature but to others it is quite intimidating.Tonight we are having a graduation party for Jessica and Matt.My sister and brother in law again have graciously offered to open their home for us to host a gathering for one of our children.Since moving to the townhouse we are limited in the adequate space department.We have a taco guy coming to do tacos.Crowd pleaser for everyone so it should be a relaxed,laid back,fun filled evening.Caitlin and Danny will be home as well.And thrown into the mix is Matt's playoffs for the final four for the volleyball championships.Full weekend with much hope and prayers that Miss Zoey decides to behave herself and stay feeling well and fever free.That's the update here.We are kind of all over the place.Much like my mind and body these days.I am never quite sure which direction I am heading and am often just in survival mode.Doing what needs to get done and trying to enjoy the moments as I go along.Prayers all around for the Needham's please.We have a lot going on and all of it leading up to the final half of the last round for Zoey.I find it so hard to believe that that moment has arrived.Blessed that we,or rather she,has gotten to this moment.There is never a day on the 4th floor that that reminder is not given :We are, despite the current circumstances,blessed beyond words.Today I ask all of you to pray too, for a few of our little friends who are at pivotal points in their battles.First for Kai,who received his Bone Marrow Transplant on Wednesday.He needs prayers for his little body to accept his donor marrow and in the words of his mom,"We pray that these YOUNG stem cells can find their way quickly through Kai's blood and nestle in good and tight."We pray also for sweet little Madison who's tiny 4 year old body is fighting like a true warrior against neuroblastoma and all the horrible side effects of her treatment over the last last 6 months.And finally for our special love Sol Merie,who Zoey is not only connected to by an extra chromosome but AML as well.Sol Meri's journey is nearing the end and word has come that her family is bringing her home,to love her and release her outside the confines of the cold and harsh walls of CHLA.Knowing this child has been a privilege and a blessing and her infectious smile and beautiful kisses will remain with me forever.Please remember,each and everytime we leave the hospital,we leave so many that we love.My heart is always connected there,it always will be a place of indescribable sorrow but immeasurable blessings.Have a great weekend everyone.Thank you for your love.
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