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Happy Birthday to me!

1/12/2012

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First off Thank You All so very much for your birthday wishes!

Now to tell you of the best present I got today.  Zoë let me sleep for 7 uninterrupted hours last night!!!!  Which came in super handy for today.

Zoë had her kidney function checked today.  This test uses a radioactive dye that is put into her blood stream.  Then her blood is taken two, three and four hours after.  Being that Zoë has her PICC line it was assumed that this would be a painless process.  However, like all best made plans this one went haywire when her PICC line refused to let blood be drawn.  So she had to have phlebotomy come and draw her blood.  She was stuck a total of four times in order to get the samples needed.  Lets just say that Zoë did not get any good sleep all day with being
poked every so many hours.  She was a trooper though, and with the help of some sweet ease was able to handle the pain.

The test results are in!  And wonderful.  When Zoë was first admitted to the hospital she had the same test to
determine her kidney's function, and to set a baseline.  Her function then was at 50 (I don't know if this is 50% or if another scale of measurement is used, I guess I should ask), today her function was in teh 90's!  So she has doubled her kidney's function since being here!

New battles to be won:
Diaper rash!  Oh...boy oh boy.  I am sorry Zoë to be discussing your bum with
the world.  But because of the rash the doctors are holding off on chemo for a
few days to let her raw bottom heal.  She is on a medicated ointment, and we are
doing bare bum with oxygen being aimed at it.  Hopefully this will help.
 
  Battles already won:
I now know to have all of the chairs with stuff on them...remain standing...and be glib when dealing with the social
worker.  Her uncomfortable visit was only 10 minutes today.  She asked when she will meet Zeppo.  I gave a noncommittal answer and thought, "Oh you poor woman.  If I am loosing patience with you I can only imagine how Zeppo will handle you."

New terminology:
I think I will start a new "section" to my posts to help me, and you understand some of the medical things going on with Zoë  Tomorrow Zoë will be back in surgery to get a broviac.

Broviac-  This is a catheter that is similar to a PICC line, but it is placed under the skin in the chest, it is tunneled into a vein that goes directly into the heart.

The broviac will be done tomorrow afternoon around 2ish.  It is done under general anesthesia, this means a trip to the OR, and a long day for me.  Whenever Zoë goes for a procedure the day starts out with us having to withhold food from her for 4-5 hours.  Or FOREVER according to Zoë who spends most of this time crying, fussing, and just plain mad.   I accompany her right into the room where the procedure will be done.  I sign all the paperwork, or if
Zeppo is here he will.  Then I am told, "Mom go and take a walk, or get something to eat and relax.  We will call you when she is in recovery."  What I usually do.  Paperwork, or write thank you letters, or work on the blanket I am
crocheting for Zoë.  What I don't do is relax.  I jump every time the door opens waiting for a nurse to tell me to go to recovery.

In the recovery area I usually find a very sleepy Zoë who is fighting to keep her eyes open.  She is  looking for me.  Once I am there she will calm down, and slip in and out of her anesthesia .  I usually bring my book, and I will read out loud to her.  Or to myself if she is really passed out.

This will probably be what most of my day will be like tomorrow. 

So some positive and uplifting news.  Because Zoë is not hooked to a pole for most of the day I can now pick her up and move her around without the help of a nurse.  I can also go for small walks with her.  Today we went to the playroom to look out the window together.  It over looks Boston, and we can see quite a distance.  I don't know if she was looking at the painting of snowflakes that was on the windows or the rain, or the buildings, but she enjoyed looking out with me.  Because of this little walk word of Zoë got around to 6 North, and a little girl who also has cancer.  She did a teddy bear drive this past year, and wanted to give Zoë a toy.  So now Zoë has a special blue dolphin.  I hope to meet her to thank her, and to have Zoë say hello too.  I am forever amazed by the generosity of those who are in a less fortunate position.

Well all it has been a very long day for us all, and I hope that my crying Zoë (who has been crying for a good few hours now) will settle down and sleep soon.  I did get a small nap in today so at least I have that going for me.  :)

This post was brought to you today by Chocolate Covered Strawberries, and my wonderful Husband.  Thank you so much for making my strange birthday wonderful!  I love you!  Also by the day shift nursing staff who surprised me with a cake and two balloons (Zoë is getting quite the balloon collection!)

Love and Hugs from CHB!

PS. Zoë is not calm and snuggling...I am now reduced to one handed typing.  :)  Night all!
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    Laura is Zoë's mommy.  Forever and Always.

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The Zoë Faye Foundation's mission is to provide support and assistance to children diagnosed with Malignant Rhabdoid Tumors, Atypical Teratoid Rhabdoid Tumors, and Non-CNS Extrarenal Rhabdoid Tumors, and their families; provide pathways to information, financial relief, and raise awareness for rare pediatric cancers, and funds for researchers who focus on Rhabdoid Tumors and related cancers with the hopes of achieving a cure.