Monday, June 15, 2009

Free to fly ....



I have often said, over the last 8 months, how scary it was going to be once chemo was over and done with. The time when Zoey would have to fly on her own and we along with her. That time is now and today, on the day of our first clinic visit, post chemo, we are spreading our wings and letting the wind take us where it will. Our day was long. Left the house at 8:30 am and walked or rather slightly staggered, back in around 6 pm. No, I was not drinking but after the last couple years, who could really blame me. Anyway, we were at Children's half of the day and then headed to UCLA for a neurology appointment with Dr.Shields. Zoey was a trooper. Evident by the pictures. Yes, she is in the back of the car. No, I did not transport her around LA in that fashion but it did serve as a nifty changing station and g-tube feeding water hole. She got a major kick out of sitting back there and was quite proud of herself as she tossed her diapers over the bumper's edge repeatedly. Labs look outstanding, without sounding too cocky or over confident because we all know what happens when I am feeling comfortable and confident and that is: another shoe drops. But truth is truth and the labs look great. White is 2.41. Hemoglobin is 14.4,(I think that's higher than the vast majority of you or I), red is 4.64 and platelets are 277,00.ANC is still lagging at 570 but that is to be expected. It will be awhile before her immunity is up to snuff. We go back for labs in 2 months and she will probably have her port-a-cath removed sometime in the next month or so. We talked about the future. Zoey's doctor shoots from the hip and I like that. He said if we could get 2 years out and no relapse, we, or Zoey, SHOULD be in good shape. All in all her doctor was pleased and gave us the go to live our lives. Reclaim and re-enter and that means: maskless. Yes, no mask. How strange is that? Scary strange. So much so I still made her wear it throughout the hospital and in the elevators and parking garage. It will take me a while not having that germ barrier safety net. What will take me no time at all will be sliding, inconspicuously back into society. In fact in between the two appointments I stopped at Coffee Bean, got my daughter out of the car and waltzed right in and ordered up my favorite. That felt amazing. Haven't done that in 8 months. Got a few looks. Not my imagination or that chip on my shoulder. Amazing, seems as though some people have never seen a child with Down syndrome. Or at least their double takes and subtle stares when they walk by, lead me to that assumption. Now the coffee, or in my case, the Pure Chocolate, stop would have been perfect but it elicited a feeling in me that I really and truly would rather forget. It took me back, in one split second, to a time last February, when I dropped Joe off at preschool, walked into Starbuck's with my daughter and felt comfortable and capable and regular. Zoey had had her heart surgery, overcome Transient leukemia,fighting tooth and nail at PT after an inutero stroke and we were just going to hit the "Down syndrome stuff." Easy, right? Wrong. That morning I left Starbuck's and went home, fed my daughter and watched her have her first seizure. IS diagnosis followed and life changed instantaneously, mostly for Zoey. See why I don't like comfy and capable? But there is no denying that that is what I feel right now. That is what I felt today as I strolled out of Coffee Bean. From there it was UCLA. Not one of my most favorite jaunts but had to be done. Dr.Shields was blown away by Zoey. In his words"IS and leukemia is part and parcel" with Down syndrome but he couldn't recall a patient of his that had had both. Well Dr.Shields, this is Zoey we are talking about. She does things in her own unique way. Zoey has gained almost 8 pounds since she began Topamax last May and her dosage has not budged. 6 of those pounds have been gained in the last 8 months. Zoey's IS is considered symptomatic because of her stroke and with that there is a 50-50 chance if we weaned her off Topamax, her seizures would either return or be resolved. His opinion is not to change anything right now and to that I say,"Thank God,"literally thank God. I do not think I could emotionally handle the wean right now. Too much for this woman and I am not afraid to admit it. We will go back in 6 months. Call if we see a seizure. She is on a fairly low dose so we have wiggle room and the card of a Hemispherectomy if we get into trouble. And that folks is an absolute blessing. So many of our friends are still struggling with unresolved seizures and are still searching for their miracle. Zoey is lucky. Despite all of it. From Down syndrome to leukemia and all of it in between, Zoey is lucky. If I ever lose sight of that and become blurred on the blessing of where she is at then I am missing the bigger picture. We are ready to fly. So often in the past I have been just flapping to no avail but today I am lifted and carried by hope and faith and by one little girl, that I spent the day holding and hugging and kissing and telling her how proud I am of her and how proud I am to be her mom.

*I want to extend a HUGE thank you for the amazing outpouring of support in word and comments for my marathon and the generous donations to my fundraising efforts for Team in Training. I am grateful and humbled and thank you all from the bottom of my heart.

*I wanted to also say that somehow I lost my entire blogroll and had to start from scratch. Please do not be offended if you are not there. I will have to wait for a comment from those who are are missing so I can add you. I tried to go back on the last several posts but I KNOW I have missed a great deal of you.

*Zoey has a new button that Rebecca so lovingly created for her. I would be honored if people still posted one for her as prayers are still needed. Zoey has a long road ahead of her.

* Last but not least, please keep a few people in your prayers. One our little buddy Jax. He is having surgery tomorrow and although the surgery is relatively routine, this little guy likes to keep everyone one on their toes and could use all the good vibes he can get. Then there is my Caitlin. Baby Ava/Emma is due in less than 4 weeks and Caitlin is starting with some possible Preeclampsia symptoms. As a mom, being so far away from her leaves me feeling helpless and of course worried so extra, extra prayers for her and baby girl. That's all. If your still here, thanks for hanging. It was a long one. I swear, this new era should include some shorter posts and new format or I might lose some of my beloved readers.

27 comments:

Angi Grasso said...

Heather, I think those stares in the coffee shop are because Zoey is so darn cute:) Keep on living...she's got a whole lot of that left to do!! So glad you guys can get out an about, it is so important... Angi

Anonymous said...

Congratulations on those great numbers - Zoey looks very healthy and oh so happy in those pics - love them and I just can't get over how she has grown in the last 8 months. Your blogs are not long - we (and I think all your blogging readers will agree) love reading about the family, especially those of us who are soooo far away, keeps us connected. You guys are are on our "forever" prayer list and will say a few extras for Jax and all your other special friends. Go out and enjoy life, as you certainly deserve it!!

Robyn from Otisco

stephanie said...

I agree with the comment above. Zoey is gorgeous and people can only stare in disbelief of her beauty. They were good stares, Heather!
Good news all around... knew it would be.
You too sound fabulous, I'm so excited for you and your family.
Will keep Caitlin in our prayers, that the rest of her pregnancy passes quickly and safely.
Thinking about ways to help your fundraising.
And who knew Sophie could run!Maybe she'll join your team... she would need a chaparone,LOL
Kisses to Zoey, our love to all.

The VW's said...

Zoey, you are amazing and adorable!

I was thinking the same thing about the staring in the coffee shop. At first I thought, I can relate to that, but then I looked at Zoey's picture and thought, "Of course they would stare! Look at that girl, she is PRECIOUS!"

Prayers will continue for your sweet girl and all of you! HUGS!

ABandCsMom said...

Congrats on those great counts! Enjoy your new found freedom. It's so great! I agree with everyone else, Zoey is just so darn cute, people can't help but look at her.

Peter Olson said...

I agree with Angi, Stephanie & the VW's. Zoey is a beautiful little girl. She is a blessing from God!
I love reading your blog and looking at the pictures. I have a link to "Little Wonders" from my blog "Fighting AML".
I pray that Zoey continues to get better and that you are blessed in your efforts.
Peter J. Olson

blogzilly said...

Zoey really is amazing, as are you all with your positive nature in the face of all you go through. You are all a huge inspiration to me.

Mo said...

Wonderful news!

Brian tells me all the time that being happy and relaxed does not increase my chances of something bad happening to me. I'm dubious, but I try to listen.

Prayers for Cait as she navigates the last month of her pregnancy. She is so close - Zoey is almost an aunt!

rebecca said...

Zoey is one amazing girl. I was quite honored to be able to create your blog and that new button. :)

Please give her a kiss from Elainah.

Bea Braun said...

No mask what a miracle!!! We can't wait to see her in church. You'll never be able to leave with all of us oohing and aahing at Zoey. Of course people stare, she is completely adorable. Lots of prayers for Caitlin. Living in your commune would sure make life easier for everybody! Enjoy your carefree summer day!

mommaof4wife2r said...

hooray for soooo much! and here's what i think...no lucky-ness in that girl...all blessed-ness! she is a beaming reality of the awesome power and love of god. she's so stinking cute and i just want to give her a big hug...maskless!

Junior said...

Congrats on good news, and being able to get out and enjoy life again.

I have the same struggle with being able to relax, every time I do something seems to happen with Junior.

Hope said...

I agree, the stares are because Zoey is beautiful! She shines. I've been saying that for months.

Michelle said...

My friend...thanks for talking and thanks for listening yesterday. I was so much more 'at ease' after talking to you and knowing you and Miss Zoey are 'ok' and ready to fly! Always remember you will NEVER be flying alone...I know I, along with many others will be flying right along side, lifting you as you need it and certainly enjoying our blessed journey together! Kisses to all your family and we will certainly pray for Caitlin..please keep me updated on her and if there isanything she needs or we can do, but we will certainly start with prayers all around. Love you dear friend!

Anonymous said...

Long posts are A-Okay Heather - makes me feel(and others, I'm sure) seem closer than we are (miles apart) especially those of us here on the East Coast.

And kudos to your trip for coffee - shame on those that you felt were looking upon Zoey as different. - Well, guess what world...SHE IS! SHE A SPECIAL/MIRACLE ANGEL... sent down here to teach us all what is really important in life. So Zoey girl - you be the bright wonderful little beacon that you are. And I might add, you look like a "big girl" in your pink outfit.

As for long posts, I'm thinking that everyone thinks - that Bluebelle, who ever she is, is certainly long winded. I'm sorry, but that's the way it is!! Guess being an aunt, great aunt and soon to be great-great aunt cuts me some slack!

Love & hugs to everyone

(Aunt) Bluebelle

Cailin, Stay healthy, we are all thinking of you

Anonymous said...

Heather - Bluebelle again. I see your donation page, but did I understnd you to say you would post info for bracelets? I have several people in mind - not sure where info is located

Thanks

Blue

Krissy said...

Congratulations on such wonderful news!

I agree with many of the other commenters- I know I'd be staring, she's sweet as can be and adorable!

Jamie said...

hee hee! look at her! she looks great! Ohh this lil one just touches my heart..you are all so strong! keep goin Zoey!! woo hoo!
And let em stare! Shes adorable!

Anonymous said...

I'm a friend of Pablo's dad, Jeff, I've been following Miss Zoey's progress and am thrilled that she's doing so well!!! I'm with the other folks who have commented....she is so incredibly beautiful...people are looking at her because she's a head turner!

Jenefer

Lisa said...

Zoey looks great! I've been following your blog and I just love every picture of Zoey. Whenever I see her sweet face I tear up and smile at the same time. You and your family are in my prayers.

scrappy quilter said...

I'm excited for you....keep on flying friend. It's amazing to read Zoey's story, to see what she has accomplished. I firmly believe she has a whole lot more to show us all. She is one incredible little girl.

Judy said...

Oh Heather, I wish I knew you were going to be at UCLA. We're there every day! I would have loved to have met up with you!

Zoey looks amazing! You can truly see sparkles in her eyes! You're continually in our prayers!!!

Nancy said...

Yep, I have to agree. If I saw you and Zoey in a store, I too would be staring/looking. But truly, truly, it would be because she is so adorable! And while it might cross my mind that she had "something", it would be a brief thought and then I would just continue on trying to get her to smile, and talking to her like a fool...cuz that's what I DO with sweet babies! :)

Will pray for Caitlin and her little one!

Nancy in CT

Lacey said...

I swear I left a comment. But it disapeared. Huh, maybe my brain is just fried. She looks so great. I need a Zoey hug, I was to paranoid to touch her when we visited. If she would have caught a cold after that I would have felt so guilty.

Barbara said...

Your post lifted me up, Heather. Thank you so much for sharing Zoey (and your whole family) with us in cyberspace.

Joella said...

Praise GOD for everything he has done for your family and especially for Princess Zoe..... This day has been long overdue..... LIVE on Needham Family Live on!!!!! Zoe looks sooooooooooooooooo good in her pic, and she is getting soooooooooo big. Caitlin and baby girls is in my prayers. Congrats to Taylor, you have an amazing daughter! I would love to help some way in the fundraisers.... I make jewelry and I would love to make something we can sell and donate all the profit to your race, in honor of Zoe, downs and leukemia... what is the ribbon colors for L, for D it's blue and yellow ,right? Here is my blog jzaccessories.blogspot.com, look on there and see if you have any ideas you would like, we can change colors...... Let me know what you think. I will think about it too and get back to you.

Prayers to you and your family
Joella

kristynewb said...

I'm so happy to hear that Zoey has finished chemo and that her numbers are so great! This is such wonderful news!! I'm still keeping Zoey and your family in my prayers.