Monday, April 20, 2009
Fairly Uneventful ....
.... just the way I like it.The day flew by.Much like the rest of our days around here.Back to school.Children begrudgingly tumbling from bed.Parents feeling much the same.But once we got rolling,things did just that,rolled right along.I must say,we are pretty cohesive,this team of ours.We have learned to work together to make this small army we have,work.The little guys included.Even the big girls who aren't here on a daily basis,contribute in their own,much appreciated way.Today for instance,calling to check in on Zoey's appointment.Chatting with me and giving me some much needed adult conversation that I often yearn for.Taylor,who does more than her share,by default, as she is the only one of the older set still at home.She watched the boys for me while they swam this evening.It is brutally hot here and a night swim was a perfect way to end a Monday.Then there is Mark.Poor guy.Pulled in a million directions.Even gave up a chance to go to a Laker game yesterday because he felt there was too much to get done and not enough time to do it.I encouraged him to go but he insisted on staying.The day today played out much as I had hoped and prayed it would.Zoey's labs were fine.Did I doubt that?Of course I did.Probably always will.Chatted with the doctor a bit a longer than I normally do.Asked some tough questions.Like prognosis and expectations.I am not big on question asking and I no longer google ... anything.I did when we found out she would probably be born with Down syndrome.I did for strokes suffered inutero.I did for Infantile Spasms and hemispherectomies.Leukemia,not so much.I know the deal.Zoey is either going to remain in remission and be considered cured after 5 years or ... she's not.So instead I ask very few questions.Ones that I am often asked from those wondering but steer clear of asking myself,like when can we consider ourselves,or rather Zoey,out of the woods.AML relapse is earlier in the disease progression then say ALL.The first 6 months will be critical and he said,if we can make it through a year then we are in fairly good shape.80% cure rate,didn't much like that percentage.I was actually under the impression it was higher than that but he knows his stuff I suppose.To her advantage,number one her age and number two, fact she has Down syndrome.Those things I liked.Besides that, I quit while I was ahead.He did say go home enjoy the week,take her out in the sunshine and fresh air and come back next Monday.Those things I REALLY liked to hear.Her numbers actually looked good.White :3.7.hemoglobin:14.4,platelets:188,00 and ANC 530.Not bad.Higher then I thought it might be and if she can kick that ANC above 700 we can get that ball rolling for the 5 and final round.Time to get going.It has been a long 6 months and it is time to wrap this up,wouldn't you say?.Zoey was a doll today.All except for getting her port accessed.That girl is so smart and so anticipates things.The good and bad and when the nurses pull our their sterile tray and she sees those gloves,oh boy.Screaming child like no other.We have seen a real burst of development in Zoey's cognitive understanding lately.To some it may not seem like much and to most others her age,even those with Down syndrome, it pales in comparison but for Zoey and especially after all she has been through,it is huge.She continues to astound us daily.She continues to remind me of how very blessed we are to have this amazing child in our lives.On another note.Sweet Kai has taken his place in the BMT unit.A new beginning.A new chance.I did not see him or his mom Rachel today but my day at CHLA did end perfectly.As I was loading Zoey in the car I saw Kai's dad Wes.I was able to give him a big hug and tell them how much we loved them.How very much we love Kai and how much we will be praying for them all.Everyday.And if you didn't get a chance,click back on my last posts comments and check out the lyrics that Kai's mom Rachel posted for me.After all she has going on,I was so touched that she would take the time to write those amazing lyrics down for me.Thank you Rachel,the words are perfectly beautiful.That is about all for the Monday wrap up.The rest of the kids are doing well.Caitlin is feeling great.She hit 28 weeks already and it is mind-boggling that the newest member of our family will be here in 3 short months.Jess is the final week and a half of school and I will add mother to a college graduate, to my list of titles.She is looking into nursing programs for September and hopefully that will fall into place fairly effortlessly.She has a few other ideas floating around if she is unable to attend until springtime though.Taylor has decided on Pepperdine after graduation and we think it will be a perfect fit for her.And the boys,well they are the boys.Carefree and happy,just the way I like it.As for me ... fine.Tired,a bit anxious but on the whole,managing.I am good if my family is good and for today,it's all good.
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19 comments:
Glad to hear all is relatively copacetic. Thinking of you.
Lovely update.There is so much to look forward to,gratuations,a baby, Zoey positively kicking this cancer put of the ballpark. You and your family are going to have a great summer. Stay up beat,you're doing an amazing job.Remember we're all here for you.(in blogland) Kisses and hugs lots and lots of prayers. Stephanie
P.S Andrew just woke up and saw the picture of Zoey. He thinks she got big.She does look like a big girl, I think it's the red sneakers.So cute. By the way, in my first post, I'm trying to say "out of the ballpark" not "put". One more cup of coffee needed. Steph
So glad you will be homa for a little while. Enjoy your wonderful family.
Praying always.
Glad to know everything is good right now. Thinking of you all.
glad you had a good day. I have not slept great since we've been home. Jax won't leave his O's in his nose at night and his monitor goes off constantly. It makes me crazy. Lets get this final round done. We want a picnic.
Glad to hear her labs were good and that your family is doing well considering. Praying that round 5 can begin soon and that Zoey does well with it all....as she normally does....what a trooper! She is precious! Hang in there Momma!
So glad her numbers are better than expected. What a beautiful, carefree photo of sweet Zoey, a little girl that has gone through so much, yet has a smile that lights the world....
Ok, I am going to email you right now! Love ya girl!
Glad to hear things are going well. It was so good to read Zoey's lab reports were up. Ilove the photo of her...she is just so sweet.
love those red sneakers and the great Zoey smile she always has!
Enjoy your time at home
Bluebelle
i love boring days for you guys!!! and i have to say, i chuckled at the thought of zoey knowing about the port...smarty pants!
Zoey, Did you grow overnight? You look like such a big girl. I love your red shoes. They look new. It looks like you are ready to go play, play, play. Have fun.
What a blessed day. Zoey looks like she's matured even in the pictures you've posted in the last few weeks. We can't wait for her to be past round 5/6 so we can ooh and aah over her in church again. My boys love the picture updates. Always praying and keeping Kai in our prayers too.
The Braun Family
Hi Miss Zoey! You sure look pretty today in your little red sneakers.
I am so happy to hear that you are doing so well. Big Hugs Sweety!
Uneventful is good! I love Zoey's red sneakers...she looks like such a big girl!! Smiley and happy as always!
The Brook household is Praying for Zoey. {{{BIG GIANT HUGS}}}}} We love Zoey!!!
I have been reading your blog for about two months now. And I am just amazed at your dear Zoey.
What a doll she is. This little one has endured so much but I have yet to see a photo of her with out that adorable smile.
She blesses my heart every time I see her. Keeping you all in prayer.
In Love,
Maryellen New Jersey
I have been reading your blog for about two months. Your sweet little Zoie amazes me. She has endured and is enduring so much yet I have yet to see a photo of her with out a smile. She is just precious.
She encourages me to smile through my troubles. She is a real blessings. We are praying for your family and especially Zoie.
Blessings,
Maryellen New Jersey
Zoey looks too precious sitting there in her stroller!! Yes, you are very blessed to have her & still praying for her EVERY DAY. Not a day goes by that I don't look at her sweet button & ask GOD to please heal her & deliver her from this awful disease!!
Sending you great big hugs & MANY MANY blessings!
Stay cool...I'm so jealous;)
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