Monday, February 23, 2009

Frustrating ...



I use that word ...a lot.Certainly makes the top 10 list of the most frequently used words in my vocabulary.After a very early rise this morning it looks like that old saying, mom knows best,holds true.ANC missed by a mile.520.Well,I take that back,if you consider I was under the impression she needed to be at 750,then not too far off.But it came to my attention this morning that the deeper you go into rounds,they rise the ANC parameter.Now it looks as if she needs to be at 1000.I really wish someone had filled me in on that little tid bit.I would NEVER have gone today for counts.I would have pushed it at least until Friday.The mental preparation as you begin rounds is something I would find difficult to explain to anyone other than someone who has gone through it.So today's frustration is based on A:I mentally was semi-prepared and B: physically pretty much all there.However,we need to circle back to the most important thing and that is,when Zoey's body is ready,we start.Everything else is still looking great.White is up to 2.67,platelets are 326,000 and hemoglobin is 14.2.That number is actually on the high of normal and I am wondering why.Anytime numbers are out of normal,we as parents of these kids just jump to :what is wrong?When 9 time out of 10 it is nothing.I call it "lab-anxiety".And I hate it.It is all about numbers in this battle.So we are home.Probably until Monday once again.That would be Monday March 2nd.That would be Monday March 2nd,Zoey's 2nd Birthday.Happy Birthday Zoey,welcome to Round 4.Seriously though,a number of people have commented on how it is sad she will be in the hospital for her birthday but we look at it the same way we did Christmas.We are doing this so Zoey will have a lifetime of birthdays.I suppose that's all.Please keep Zoey in your prayers this week that she will stay healthy and nothing will prohibit things from moving forward on Monday.Because there is also the parameter on weeks between rounds and Monday will be 6 weeks since round 3 began.I really want to get this show on the road.Frustrated and Anxious.Anxious:another top 10 contender.Thank you for all the well wishes and comments.We will take another rain check on those until next week if we could.Zoey has weathered the morning like the trooper she is and is at this moment,happy as a clam ,rolling around and doing her carefree thing.I think I will tubby her and try to put her down for a nap.Wish I could join her but ... life beckons.

16 comments:

Lacey said...

Praying you can get this started so you can get itover with. If you have a medically needy child, you forget about birthdays and holidays. I think we've spent every holiday in the hospital at least once.

JUST A MOM said...

HMMM, does that mean you just might have time for a pedicure this week????

Anonymous said...

Zoey will be the Birthday Princess no matter where. Prayers for Zoey and her family and friends all of the time, xo Christi Harman

MJMILLS said...

I just might shave my head on march 7th in honor and support of children with cancer. Im in Las Vegas where they hold this particular event. Man am I scared, but Zoey has inspired me to really think about doing this for Locks of Love! SHould I??? Oh man Iam scared!

Carey said...

Totally normal to be frustrated AND anxious! Although it sucks starting on her birthday, just think, you can have an awesome party the weekend before, and her counts will be really strong by then. You won't have to be freakish about all the kids being there, and they're boyfriends etc. You'll have a blast!

Also, Chelsea's HGB is always high too. Isn't it weird? She's usually in the 14's. Someone once told me it's suspected to be associated with sleep apnea (which we 're sure Chelsea has). I asked our oncologist about it and she said no, but she doesn't know everything about Ds, so I take it with a grain of salt.

Good luck and enjoy your extra week!

The VW's said...

Sorry that life can be so frustruating!!! Try to have a great week at home! I'll be thinking of you and praying for you and Zoey! I can only imagine how stressful this must be for you, but remeber that God's timing is always better than our own! Hugs!!!

Kristy said...

Heather- Sorry I haven't been by lately. Life has been a bit hectic in my part of the world lately. I've been catching up on your blog. Lots of goings on. I love Zoey's hair in the piggy tails!! She is just doing so well!! Always know that prayers and support are coming your way. I am very excited about Princess Zoey's birthday next week!! Let the celebration begin!! Hugs to you..xoxoxo

Michelle said...

My dear, sweet friend...
A birthday is to celebrate life and what a better way to celebrate the sweet life she has been given then to be at the one place that can give it back to her. Perspective...I have learned...it's all about the way we see it. It's that dang control thing...another realization that we never do have it, do we! :) It will all be here and you will be in the middle of it soon enough. Enjoy the sunshine, listen to the music, dance with Zoey...and pray my friend...I will be praying with you...always!

Sophie's Story by Elaine said...

Oh, little Miss Zoey will be turning 2!!! What a fight she has put up her first 2 precious years of life...she is an amazing child. I will keep Zoey in my prayers that Round 4 will start next Monday. I can only imagine the anxiousness you must feel to have all of this behind you.

Anonymous said...

Well, I sort of expected you would be home again. Zoey is following her usual pattern (3 weeks) I can just imagine your frustration when you were informed her count now has to 1000 instead of 750 as in the past. Too bad you were not informed....Another "umm" misinformation from the medical world.

But..... on the plus side - you're all home for another week...and just maybe.... Zoey will get to celebrate her two years at home! Only time will tell - in the meantime, enjoy the days at home - and Heather.....it's okay to take a nap when Zoey does.

Hugs to everyone

Bluebelle

Mia hat eins mehr! said...

My sweet Heather, would you send me your address via email? I have something for you, and for Miss Z´s birthday!!!!!

I really hope that you can start with the next round soon, I can imagine it is so hard to just WAIT. Now, maybe you can see it from that point of view as Michelle mentioned. Enjoy the time that is given. If possible ;-)

Hugs fronm here straight to you!

MJMILLS said...

SHeesh! YOu had to tell me she was suppossed to arrive on the 7th didn't you! LOL! Now i have to do it! Kidding! I might see how much they need to make the wigs, and cut that much off! Thanks for stopping by my blog and commenting me back! It means a lot! I follow a few cuties and I LOVE to hear back! Best wishes! Im praying for your Zoey....the rest of the fam too! *erin*

Karen Owens said...

I hear you on the lab anxiety -- do you think that's in the medical text books... it should be!

Thanks for praying for us in the middle of your own storm.

Reagan Leigh said...

I know what you mean...frustrating has been my word of choice for sometime now! I'm sorry you couldn't get round 4 underway sooner, but I'm sure you will find a way to enjoy your extra week at home. Thanks for listening to me and my ramblings...you are truly a great friend! Give that sweetpea some love!
Tera

Bek said...

Hi there...I found you through Michelle's blog. I am also the mamma of a little girl with Down Syndrome (about the same age as your Zoe). We have been so blessed to have no health problems with her, but in our Early Intervention group (6 babies all born with Down Syndrome within 3 months of each other, within the same 2 days...) we have had the rounds of issues. One of our little friends is just heading in for round 1 of chemo. I wish that the tiny people didn't have to deal with this.

Your daughter is beautiful (that HAIR!!!). Granted it is not a great birthday present, but we will add her to our list of friends to keep in our prayers and thoughts.

Mary said...

Happy early birthday Zoey! You're always in my prayers. Have a great (and healthy) week!