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.