The Results Are In

I've been avoiding this post because I don't quite know how to word it...here goes.

I finally got 'the phone call' today.  It only took them an entire week to get back with us, but at least now we have the final results and we can be done with it (in reality I'm bummed we didn't hear the preliminary results last week but I'm trying to stay positive).

The oncologist said the biopsy looked fine.  I felt a wave of relief wash over me...and then he kept talking.  He said the pathologist made a note that one of the cells looked a bit off.  They don't know what's making it look different and they aren't at all concerned about it.  As far as chemo is concerned, she doesn't need any more treatments at this time.  And then Mr. No-bedside-manner topped off the conversation by reminding me that there is always a chance that the cancer will one day return.

I hung up the phone and just sat there, confused about how I should feel.  If there's nothing to be concerned about then why couldn't he have just said that everything looked fine and left it at that?  Why remind an already over stressed mom that her daughter's cancer could return?  I know that; I watched it happen to the little boy down the hall.

I'm thrilled that we're done with chemo but my overconfidence that everything was going to be super fantastic was just smashed.  I suppose it's a time for celebration but now there will always be a small part of me that will always worry (and in truth it would have been there anyways).

Regardless of the small worries, we are done with this phase of our lives and ready to move on to getting Averi's port out and returning to 'normal' life!

I'm Repenting...

I'm just guessing here, but I think a few people may be a little frustrated with the lack of posting lately (I use the term 'lately' loosely here).  The truth is, I tried really hard to be up to date before we left for a very well deserved month long vacation, and it just didn't happen.  Once we returned, the amount of stuff to write about was overwhelming and I found myself finding things to do to occupy my time so I wouldn't be able to post.  I have since repented and am ready to update you on the amazing journey Averi continues to have. :)  Thanx for sticking around (and for caring enough to be mad at me)!

(More of this cuteness to follow soon!)

You Know You've Lived in a Hospital Too Long If...

• You don’t touch anything without first putting on sanitizer or spraying it with alcohol
• ‘Getting out’ means roaming the halls while pushing a plastic car and an IV pole
• Showering involves getting your flip flops and several handtowel sized towels with the fluffiness of sandpaper
• You know all the nurses, PCAs, and environmental services people by name, and sometimes they come hang out in your room just to visit
• Tons of strangers see you in your pjs and makeupless everyday (usually until about 1:00 in the afternoon) and you no longer think anything of it
• Your alarm clock is the nurse coming in to do meds
• You reorganize the nurse’s cart so that you can find things easier
• All of your food is labeled with your name, room number, and date, you can't remember the last time you had to cook a meal, and you are up to date on all the specials at Subway
• You only respond to ‘Averi’s Mom’
• You ask for something and the doctor says, “If that’s what the parents want then do it.”
• Vomit is whatever
• The highlights of your month are jewelry making night and free Raising Cane’s
• Your bed consists of an egg crate, three blankets, and a board in your back - and when you try to sleep in your own bed you can't get comfortable
• You’ve succumbed to the fact that your life is dictated by someone else
• You’re woken up by obnoxious beeping during the night and you reset the IV pump without calling for the nurse
• You say, “we’re going home” and you’re referring to the hospital

A Favor...

I know, I know...I have avoided the blog for far too long.  Don't worry, I have a super awesome excuse.  We took a month long family vacation, away from hospitals, central lines, vomiting, pain, and upside down lives.  It was amazing!!! (and now that we're home blog posts are sure to be coming soon :) )

So, here's the deal.  While we were gone the Buddy Walk was looming closer and I was too busy enjoying the lack of responsibility (as much as I can have) too spend time asking for donations.  So this is my call for support:

I'm not a big fan of asking people for money but the Down Syndrome Buddy Walk is one of the few things I believe in.  Donating to the Buddy Walk helps support people just like Averi and the families that love and care for them.  It supports the Down Syndrome Association of Central Ohio, which funds support groups like the one that we attend every month (that group is my second family), research, information for new parents who have just learned that their lives are following a new (and amazingly wonderful) path, and much more.

In order to get our team name (Can't Keep Me DOWN) printed on the back of our shirts we have to raise at least $1,500 by August 28th.  Please, if you read this blog and Averi has touched your life in any way, help us reach our goal by donating.

If just 72 people (I think I have at least that many friends) will join our team for $21, we can reach our goal and each member will also receive a Buddy Walk shirt with "Can't Keep Me DOWN" printed on the back (you're not stylish unless you have one :) ).  Plus, who can say no to this face?

I am so grateful for all of you who love, support, and pray for Averi.  Each of you have helped our family in more ways than you can imagine.
http://www.columbusbuddywalk.org/

*Make sure your contribution goes to Team Can't Keep Me DOWN*

To become a member of the team (which means you get a shirt):
https://secure.groundworkgroup.org/web/buddy-walk/registration?p_p_id=AthonManager_WAR_AthonManager&p_p_lifecycle=0&_AthonManager_WAR_AthonManager_struts.portlet.action=renderDirect&_AthonManager_WAR_AthonManager_struts.portlet.mode=view&_AthonManager_WAR_AthonManager_struts.portlet.eventAction=true


To donate:
https://secure.groundworkgroup.org/web/buddy-walk/donate?p_p_id=AthonManager_WAR_AthonManager&p_p_lifecycle=0&_AthonManager_WAR_AthonManager_struts.portlet.action=%2Fview%2FrenderDirect&_AthonManager_WAR_AthonManager_struts.portlet.mode=view&_AthonManager_WAR_AthonManager_struts.portlet.eventAction=true

Sterile Car

Now that we have been home for a little while, we are starting to get a tiny bit adventurous and actually leave the house to enter the big bad world of germs.  Today we went to play putt-putt as a family, figuring it was safe to take Averi outside and strapped in a stroller.

As I stuck my head in the car to unbuckle Averi I noticed that she was once again playing with the top of her central line dressing.  She loves to comfort herself by fiddling with things and more times than not she pulls down the front of her shirt and picks at her conveniently placed dressing.  Lately we have been wondering what she will do once the line is removed.

So...not only had she been fiddling with her dressing while we were driving, but she had pulled it off all the way down to the site.  If she pulls it off a little we can always tape it back down until her next dressing change, but once the actual site is exposed and no longer sterile you are in trouble.

So I buckled her back in, drove back home, got a dressing change kit, and drove back to meet Dan and Kaili.  Now I don't know if you're aware of this but the parking lot of a putt-putt facility is not on the top ten list of sterile locations.  Given that knowledge, we pulled both car seats out of the back seat, closed the doors, and turned our back seat into a 'sterile' field.

Oh, and did I mention that this was my first dressing change to ever perform by myself?  I'll admit that it didn't look half bad when I was done, but I will definitely have the nurses look it over the next time we go in to the clinic.  If that's not an adventure, I don't know what is!

PT Fun?

Sometimes Averi does things out of the blue that totally surprise me.  I have a typical child, so I know all kids get to a point where things just start to click for them, but as you may or may not know, anything new that Averi does takes a ton more time and effort - and seems to mean more too.

Today she was chilling on the couch with me and decided to pull up onto her knees all by herself.  Once she started getting a reaction and laughing about it, it turned into a game and she repeated it enough times to get on camera.

I love her little personality.  She cracks me up, even when she's working her butt off to do it.  I think we may have just stopped the world's turning for a brief moment when we found a way to make PT fun. :)

Forward Facing

Keeping Averi in the infant carrier has been very convenient.  Not only does she weigh in at 19 pounds making it easy to still carry her around but I love that during the few weeks we're home between cycles I can put her carrier in the stroller and completely cover her with both visors (keeping the germs at bay).

I've always said that we would convert her to forward facing when she turned 2, but it seemed silly since she didn't even get a car for several days after her birthday.  Now that she's done with chemo, there are no more excuses.

I can't believe how old she looks.  Kaili loves having her sister facing the same way so they can play together and Averi loves being able to see everything.  I can tell riding in the car is going to be lot more fun now.


In case you're wondering, we still haven't gotten the results from Averi's biopsy and yes, it's a 3 day weekend.  After not hearing anything on Thursday I called yesterday and left a message with the nurse hoping to at least hear the preliminary results even though we couldn't get the port out.  I never heard anything back.  By the time Tuesday rolls around and the clinic is open again we should have the final results.  Oh well.