Wednesday, June 10, 2009

This Side of Chemo ...



I have to be honest,I really thought things would look different from the other side.I thought my days would be spent wondering and worrying about Zoey's future and the dreaded "R" word ... relapse.I thought I would spend an exorbitant time pondering the what if's and contemplating life if leukemia decide to show it's ugly face again.But I have to tell you,I have spent little or no time at all thinking or talking about any of it.Maybe it's denial or avoidance.Perhaps burying my head deep in the sand.Maybe it's shell shocked exhaustion.Maybe it's just the mere fact I do not have a single moment to stop and think at all.Or perhaps it is the amazing grace that once again envelopes me when I truly relinquish control and see this life for what it is and that is:an absolutely beautiful life.A single look at Zoey and one could see nothing else.I find myself eager to reenter the world.Go where we want, whenever we want.Unrestrained from rules and the paralyzing paranoia of germs and crowds.I am planning and contemplating outings and activities.I am anxiously awaiting the day I can stroll into Starbuck's and Target,Zoey in tow,no mask and be a regular mom,doing regular stuff with her children.I long for the time we can all go out to dinner.Which, as a family of 8 plus boyfriends and soon to be grandchild,is incredibly insane but I cannot wait to say "Table for 10 plus 2 high chairs please".These are the simple things I long for and we are getting there,little by little.Taylor graduates on Friday,outdoors,so we all will be going.Yes,even Zoey.Life on this side is still hectic and crazy and ever so busy but beautifully busy.No tubes and lines.No late night vitals.No sleeping bag and bench to sleep with and on.No communal bathrooms and trust me,I miss that the least.I do however miss intensely our friends who are still walking their journeys.I call and check in and have planned visits already.And as for Miss Zoey ... she hasn't missed a beat.She looks healthier than she did 8 months ago.She has MORE hair than she did 8 months ago.She has reached milestones that we could never have imagined she would reach, 8 months ago.Her road ahead will be scattered with other obstacles.That is a given.That was a given from her very first breath.But today,at least she has been blessed WITH a road.We only have 10 months left of Early Intervention.We intend to capitalize on that to the fullest.OT,PT,Vision and feeding therapy, as she has become totally g-tube dependent, as well as whatever else we can get our grubby hands on.She has barely been able to begin Early Start due to all her challenges.Flat on back for 6 months until heart surgery.Recover,therapy for a few months and then BAM,Infantile Spasms.Recover, a few more months of therapy and then BAM,Leukemia.My heart cannot take one more BAM,thank you very much.So, as we begin our walk on the other side,we walk with confidence and faith ,as our eyes are fixed on the future.We have our first post chemo clinic appointment on Monday.Poor baby will have to be accessed again.She hates that.That appointment will lay out her post chemo plan.How often we have clinic.How often we check labs.When her port will be removed and when will we be able to say "Been there.Done that"When will we be able to say Zoey is cancer free?When will we truly be able to breathe deeply and say this is done?Monday we also have a follow up neurology appointment with Dr.Shields at UCLA.He hasn't seen her since September ... he is NOT going to believe what has gone on in the last 7 months.I think he has been fairly impressed with the resiliency of this child before cancer became part of her medical history.Lord knows what he will think now!Zoey has been blessed with seizure freedom for a whole year now thanks to Topamax.A drug that no one thought would work.Including Dr.Shields.There is not a day that goes by that we are not filled with complete gratitude and humility for that gift.We are totally loving life on the other side.We continue to be blown away by the tenacity and courage of this small child.We continue to be filled with hope in the future and fully intend to savor the moments and days here on the other side.

23 comments:

Mommy to those Special Ks said...

:) I'm glad to read it's not consuming you and you are enjoying real life again! It took us FOREVER to get unpacked, I remember looking for something like 2 months after our last hospital stay and it was still in a bag from the hospital! haha We were too busy LIVING though so I didn't care!
I'm glad the Topamax is working for her! I'm on it too, for Migraines. I am on week 3, I think. How much is Zoey on? (I would guess a lot less for her tiny size!) My mom's company (uhh the one she works for I mean) makes it.

vicki said...

i saw your blog on another bloggers post with prayers for your daughter so i decided to come and read your blog and i have to tell you that i admire you in so many ways,staying positive knowing you have a special needs child and seeing that bright happy little girl i have to say you are so blessed, i have added your little zoey to my prayer chain and you also knowing that HE is always in control has helped me with my many issues and seeing how you are so positive and knowing while it won't be a easy road for her she has a wonderful set of parents who are right there for her. god bless you and your family i shall be keeping YOU all in my prayers god bless vicki

Denise said...

Heather...I am so glad to hear you are living your life without being consumed by the "what ifs" What good does it do us anyway? I am so proud of you for moving forward so easily and I truly pray that you finally get a break from the "BAMS" Love and miss you guys!!

Anonymous said...

Heather you and the entire family have earned "life on the other side". It has been such a long, journey since Zoey's arrival and yes, even before, when you knew of a few obstacles this little one would have that it seems reasonable that you are a bit pensive. (BAMS) But I like hearing (you saying) that you are enjoying life on the other side. Mommy, daddy, Jessica, Caitlin, Taylor, Jake, Joe and Zoey ALL DESERVE it. Just remember all of us out here in blogland (is that a word) are so, so happy for everyone and we are keeping our fingers and toes crossed that this next year will be cancer free.

"A table for 10 and 2 highchairs please" - what an awesome thing!Enjoy......

Hugs to everyone

Aunt Bluebelle

Zoey is sparkling more and more in each photo. (and learning new tricks too)

The VW's said...

I'm so happy for you! HUGS!!!

Ian Marrey said...

not exactly camera shy is she........:-)

and why not when she's such a charmer

Anonymous said...

While I am having a hard time believing you will ever be free of germ phobias, I love the fact that you are enjoying your new freedom. Call me when you have a moment, I want to come see you all.
kathleen

Lacey said...

I'm so excited for you, its like starting life all over again. Zoey will have forgotten what the grocery store looks like, she will be amazed. like I said, we need to have that BBQ!!

Melissa said...

I'M SO PROUD of you Zoey!! My goodness, what a fighter she's been & the strength that she's had all along has inspired me so much. Every single time I come & visit your blog, I become so INSPIRED & shed tears of joy!!! God Bless you sunshine...Keep on fighting & being such a great little girl! You are an inspiration;)
Will keep on praying for you
{{hugs}}

scrappy quilter said...

I'm so excited for you and all that the future holds. She is one little trooper who has so much spunk. I'm glad things are going well for you. Hugs..

Carey said...

No more BAM's. Seriously! Hooray for busy! although some days I'd like to just play in the backyard all day long!!!

Victoria Strong said...

I must say I am so relieved to hear you are not paralyzed by fear -- and no one would blame you if you were. But to see sweet Zoey playing and smiling, well, I am just so glad you are getting to as well. I can't wait for you to get to sit around that big table of 12 and see all of your wonderful babies surrounding you (with lots of noise and people in the background)!

And a play date sounds great -- how does your July look :)

Mia hat eins mehr! said...

Nobody deserves that more than you do, my friend. Will email you about october, yet there are no current plans, I´ll talk to my friend soon about it!

stephanie said...

Yeah, don't look back, just keep looking forward,the view is so much better. Love ya!

Kelly said...

Rock on, Miss Zoey Girl!!!

therextras said...

I am happy to see this particular struggle in your lives. ;) Barbara

sheree said...

yeah, I'd say you've had your fair share of BAM's! I have a wonderful feeling you won't be seeing anymore of those ;)

ABandCsMom said...

Yes. Yes, it's Joany and Carly from carepages!! I figured that I read so many blogs, I may as well have one too!

Monica said...

Zoey looks like she is doing her morning stretches. :)

If I need a smile...I just come here and look at that sweet face. I know she doesn't always feel good...but she is always so full of joy.

Miss Zoey you are beautiful!

Jeana said...

I'm praying for you guys, praying that you will not be hit with another BAM. You guys are so strong, thanks for inspiring me.

Michelle said...

Ahhh Heather I am so grateful that you have been able to smile, to watch Zoey from the comforts of your home, thrive and smile and roll and get into things...I love it. It fills my heart with joy to know life as we know goes on, the sun is shining, your family is bonding once again and my friend, you sound happy. It's a great feeling to feel free, and not have a moment to let those 'what-if's creep in, cause we both know they try! Keep smiling my friend, keep smiling! Love to you all!

Kristy said...

What a beautiful thing to be able to say you are on the "other side". Zoey looks AMAZING!!! I am so happy that your family is going into the summer with such sunshine. We love you Needhams!!! xoxo

Jeanette said...

I know that there are so many wonderful people that follow sweet Zoey's journey. I am honored to have been watching and praying for her for the last 7 months. She is truly an amazing little girl. And you have been such a wonderful and honest inspiration. My dear friend and Godmother to my kids is about to have her last round of chemo, on her second round of cancer, before receiving the "remission" status. I have learned so much over the last many months that has helped me to understand her journey better. thank you for sharing your lives. Zoey is such an amazing little girl... I pray for her to settle down into life without the hospitals! Congratulations.