Monday, March 2, 2009
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.
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32 comments:
Wishing you a blessed Birthday Zoey. You certainly are a hero.
Keeping all of you in our prayers.
Heather you are Zoey's hero, and so is her daddy, and her brothers, and sisters. You are my hero certainly, as Zoey is. Sending lots of love, Christi Harman
Well, after a long hard day you and mommy are home with daddy, your brothers and sisters. I must say I had a hard time yesterday thinking of you spending a rough day (your birth-day) in the hospital. But,,,,,here you are home again with everyone. Please enjoy your family time while waiting, waiting, waiting, for the next step.
Wonderful photos of your special day (Sunday) only big sister Caitlin was missing. but she did the wonderful video of your life's journey.
And birthday girl, if you did not want cake, that's okay too!!! Love your independent spirit - you go girl!
Love and hugs to everyone
Aunt Bluebelle/Loraine
I see that Aunt Bluebelle noticed the exact same thing I did...I'm missing from that picture :(
it made me a little sad but it's just a picture, i was there in spirit.
I like the Rody...and Zoey's outfits....i want them all...hint hint
Cait
Zoey is a hero, but mom is too. Your responses to all that happened with Zoey yesterday, were exactly what my responses would have been.
Carly too, had a terrible time with her ANC trying to recover. The culprit, her oral chemo. She took a reduced dose for months and months. Here we are, 4 1/2 years after that horrible work "leukemia" entered our lives.
Zoey will conquer this, as she has many other issues in her little life.
We continue to pray for all of you,
Joany and Carly
Thank GOD! Happy Birthday Zoie and I'm so sorry you were on such an emotional roller coaster, I pray for your peace! BTW I did see captions on the montage, beautiful!
Thank you for writing this -- you have a great way with words that truly speaks to my heart. Many of the things you write I am thinking but it's hard for me to put into words.
Thank you.
HAPPY BIRTHDAY ZOEY!!!! Sorry you didn't get to start round 4 today... it's a bittersweet thing, I know. When the time is right, the counts will be there. We love you and pray for you EVERY day!
My dear Heather...you are all my hero's...thanks for teaching me so much in these last few months. I am so so happy the tests came back good. It truly was an ominous day around here...I know why now. Please call when you need to...I know most of the time its easier just pacing, crying, hoping...then to have to talk it out, but I am always here!
Happy birthday sweet girl. I can imagine that you want to get in there so you can get it over with that much faster. I would go crazy to, packing everything just to come home and wait some more.
I'm so glad that you called and kept me up to date on the progression of the day. You and Zoey were in my prayers all day long. I wish I was more of a comfort to you during these times, but often times I don't know what to say so I just listen...and then pray. I'm so glad everything turned out well though. Truly an answer to prayers. Happy Birthday precious girl!
I know that she is certainly MY hero, as are you! So quit beating up on the friend I love so much!!
You are amazing Heather, and worrying about how you 'handle' things or feeling the need to apoloize, is completely unecessary in these times!
I understand the apologies to Z, the Mommy 'I'm sorry's' for not being able to endure it FOR her, I totally get that, but you are, without a doubt, the best Mommy I know, she is one very lucky girl!!Love you and thinking of you and the Princess...give her extra birthday kisses from me and her BFF!
we have the total right to break down sometimes! you must get your emotions out, then regain yourself...all of which you did. those people you lashed out of understand, im sure. zoey is a trooper! i held my daughter as she merely got her blood drawn for the first time yesterday and it was awful! i thought of your family at that moment, and wondered how you endure it all! you guys ROCK! the lil ones don't know why we have to put them through so much, but thankfully at this age, they don't have that great of memories!!! thank goodness! keep your head up! easier said then done! i wish i had the perfect thing to say, & all the answers, ;)!!! i'm reminded also of how this medical field is just but a "practice." they can't even figure out what's wrong with my daughters skin! it's very annoying, so i cant even START to imagine how annoyed, mad, sad, glad, relieved, anxious you get at times! ill stop rambling now! have a great day, once again the pics are awesome! thanks for sharing! *love erin*
BTW, i was waiting all day to hear how things, were going!!! lol! im a dork for sure!
First of all - happy birthday, little princess! You look wonderful in your red skirt (how great you can wear T-shirts and bare legs outdoors - it is still winter here. I envy you!). Funny to see that "Rody" is known all over the world ;-)
Second - I felt so terribly sorry for you, Heather, after I've read about your day and your feelings. You are so brave, you just don't realize it anymore, because you are used to face huge challenges!
This eve, I was sitting in the waiting area of our pediatrist, 2nd time within a couple of days, because my 8-month-old baby suffers from bad cough and fever and I am scared to the bones of pneumonia. Sitting there with my worries I thought of you, how you manage to cope with the situation, with all the fear it comes along with, how you reproduce so much strength again and again to tackle the next challenge.
You truly, deeply, really amaze me, Heather! Great Mom of some also amazing kids (and real beauties, btw ;-))
Last: though I am not in the position to ask you a favour - if I was, I would ask you NOT to use your precious time to concern yourself with some www-weirdos. We are all desperately longing for new information on Zoey and the rest of the family, and the last I am interested in is some nobody trying to get his famous 15 minutes ;-)
Big hug - Alexandra
Happy Birthday Zoey!!!! You're amazing!!
I just want to say that I freaking love Princess Zoey Grace and I freaking love you Needhams... always have since I was 4 and I always will. Happy Belated Birthday Zoeyyy!!!!!
Love,
Caitlyn Marie MacKechnie :)
Wishing the princess warrior a very Happy Birthday!
Today was awful and I hope there are few like it in your future...but, Remission. This is good news. Very good news. I know it isn't a magic tada, all better, but it is hope and a fight and the potential for a future. I know there is still much more fighting ahead of Sweet Zoey, but I just know there will be many, many hugs and kisses, too. Sometimes the R word is a good thing. We are fighting for you Zoey.
That's the "R" word that I pray will be forever in your vocabulary. You're an awesome mother Heather, don't ever doubt that for even an instant. You're also an incredible human being, that in such an emotional time, you still concern yourself with other people's feelings. Lots of love coming your way, and you're always in our thoughts and prayers.
Sweet Heather,
So happy to hear that your scare was just that and not more. What a relief and what a roller coaster as usual. I hope you can relax at home today with Zoey and soak her up a little and forget that tomorrow (or soon) you have to go back to CHLA.
Hang in there. Sending you and Zoey and your family love and hugs.
Happy Happy Happy Birthday, Zoey!!!
xoxoxo
laura
Heather...you are way too hard on yourself. You have every right to feel the way you feel. It wouldn't be normal to hold all that in. You are only human and you are doing the best you can which is ABSOLUTELY AMAZING. Heather...you are my hero. Because of the things you write in your blog, I have come to appreciate Sophie more than I would ever have. Your honesty and faith and positive thinking and taking things one day at a time and I could go on and on. Your blog is like a self help book for me. I look forward to reading your words of wisdom.
Love and big ((((HUGS)))),
Elaine
Happy Birthday Zoey!! Great pics. {{{{SUPER BIG HUGS}}}}} to a wonderful family :)
p.s. I LOVE LOVE LOVE the music. And Gracie just came out and agreed without me even asking her. I've kept the site up to hear the music even though I was done reading your latest post some time ago. It's beautiful.
Laura
Happy Birthday, little angel! I hope this is the best year yet for you!
Zoey, your are quite the little hero!!! Your momma is right, you are THE definition of hero! Love you sweet girl!
Heather, Hang in there! You are a wonderful mommy and although we all 'lose' it every once in awhile and have to apologize to others, it's necessary to just be cranky some days! I can totally relate to wanting to be okay with everything and just giving it all over to God, but some times it's just TOO hard to do! It's a struggle, but we learn from these times.
HUGS!!!!!
I guess your thinkin' since you gave us so many pictures in the last post that it would buy you a few extra days...
Would love to know how the Princess Warrior is doing!
Love ya!!
wish zoey a belated birthday!! you are such a beautiful and amazing lil girl. you put a smile on so many peoples' faces that don't even know you...like mine! :) you and my little one share the same birthday by the way. sending lots of bright blessings and prayers your way
Happy Birthday Zoey! I hope you have at least a week of celebrations! You are a strong, mighty girl. Keep fighting, sweetheart. You're surrounded by a beautiful family and are truly a gift from God!
Happy late Birthday sweet Zoey :) Praise God that her bone marrow looks good!!! We had that exact same scare right around Christmas. Her numbers were not recovering for 5 weeks and they had to do another bone marrow biopsy to see what was going on. I am so sorry you had to go through that, but am so glad it is over and that she looks great! Praying for rest for you all and for her numbers to sky rocket this week. The week after our scare, her number went waaay up and I think her body realized it needed to get it's butt in gear so they'd stop poking her :)
Happy Birthday Zoe from Christian @ CHLA. I am so HAPPY that you received the great news.
So glad that I came across your amazing website!
Happy Belated Birthday, Zoey!!!
Hang in there little one; Sorry your day started out so crummy for both of you. You are both such an inspiration with your strength, grace and honesty. You too, mom and dad and the rest of the crew - hang in there! We love you and miss you. Great pics! Beautiful family - all of you!
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