hair today...gone tomorrow...

Two weeks ago I looked like this...

 

Last weekend I looked like this...

Thursday I looked like this...

Today I look like this...

This is the 3rd time we've watched that hair fall out and it never gets any easier...It makes me sad each time.  I can handle the puking and the runs, the not walking, the delayed talking, the hearing aides and missing teeth....but what I struggle with more than anything is that gorgeous hair coming out in my hands...all over her clothes, all over my shirt.  Silly I know -- it's just hair and thankfully she looks completely beautiful bald but it still gets me.

We had a great weekend with Nana, GJ and the puppies, as well as Grandma.  We even hijacked one of the puppies to stay with us.  Bear has been relegated to Avery Hug duty -- something the other dogs run from.  We've decided he's either too sweet or too dumb to run, but either way it makes Avery light up that he lets her hug him.  She is talking in 3-4 word sentences now and seems to be getting better at communicating every day.  We found out that she did indeed have some further issues over the weekend when they called to tell us she had a UTI.  Hoping this explains the continued crankiness and lethargy.  Another round of antibiotics, followed by some runny poo and we should be back to good.  

Thursday's MRI is at 11 am, however we don't expect results until Monday.  CMH tends to wait a few days prior to giving results because apparently radiologists have never experienced the fear and anxiety that comes with waiting for results like these...I'm sorry -- outloud voice there....CMH prefers to looks at all scans extremely well before releasing its report is what I meant to say.  We have an appointment Monday with the team at CMH to get results.  St Jude will also be getting a copy to review over the weekend and next week will have us meeting with them via conference call to make decisions about our next step.  As soon as we have news to share we will.  The options at this point are the chemo will have stopped the growth of the tumors and kept them stable, it could have done nothing and we will see larger and/or new tumors, or it could have shrunk them somewhat.  The first option is the best and most likely -- the last being very rare and unexpected.  However, as we've already seen with our journey - miracles DO HAPPEN and we DO BELIEVE in them....we've got a very special angel up in Heaven helping Him to see what an amazing girl we have down here that someday is going to do something very special in this world.  And with a team like you all to back that up....well there's just no telling what might happen.  

In the mean time -- Make Every Moment Count.

Jenn

Thankful

Another year has passed since we were told Avery had 1 st relapsed. It's hard to imagine that it's been a full year. It was a hard year...but one we are grateful to have had. But here we are again...faced with the same devastating prognosis and trying our best to live every moment together to the fullest.
As we sat down to eat this afternoon with family, we could have been almost normal...kids screaming, asking for seconds, baby crying while one of us scarfes down food to switch spots with the mom...lots of stuffing and plans being made for Christmas. Oh what I wouldn't give to have moments like those everyday.
Fear is creeping in big time as we count down the days until her MRI next week. Did they grow? Is it getting worse? Is she in pain? What do we do now? How do we make every minute count? Answers don't come and the anxiety continues to mount. So for now, we try our best to not put off the plans we want to do and to take advantage of what we have now. What would you do if you were dying? How different would we behave if someone had given us a deadline? Isn't it funny to think that each of us is dying...it's just a matter of when. If someone told us the age in which your body would give out-- would that change the way you live now? Its inevitable I know but it's just not right for her to go before me and we are having a hard time dealing with it all.
So as you drift to sleep this afternoon (thank you turkey) I hope you have a chance to think about that...what would we do differently? What would we do better? Worry less about all the trivial things and spend the moments I can hugging, kissing and capturing the very best moments of her life...That's what we are doing.

Jenn

Weight loss before the holidays

Avery's still experiencing the runs...poor kids bottom is red as an apple. Her appetite is non existent and for once her glucose was so low they had to give her sugar water! How this sweets addicted kid has low sugar is beyond me. The nurses literally handed me a pixie stick to dump down her throat until the IV kicked in with the sugar water.

Today we had her labs checked again to make sure her electrolytes were in order and she was good. She's been weak and snugly though so it makes us think things are still not back to par. This diahrea is really the pits for us all....lots of laundry, multiple outfit changes and a really sore Tooshie. Last month it was around for about a week so hopefully by Saturday we'll see an improvement. In the mean time, Avery has dropped from 28 lbs to just under 26 and that has us a little concerned. Back to the old people milk we so depended on to maintain her weight while we were at St Jude.

Speaking of....it's that time again. Shopping time that is. Many people have asked us what retailers are big supporters of St Jude so here are some recommended places to spend your money this shopping season:

Williams and Sonoma
Target
Kay Jewlers
Kmart
Dicks Sporting Goods
Old Navy
Gymboree
Crazy Eights
Nine West
Marshall's
Auto Zone
West Elm
Pottery Barn
New York & Company
Charlotte Russe
Ticket Master
Dollar General
Brooks Brothers
Anne Klein
Delta
Jared's
Claire's
American Airlines
Anne Taylor

And then of course after a long day of shopping...feel free to grab a bite to eat at one of these fine establishments!

Chilies
Dominoes Pizza
The Fox & The Hound
The Melting Pot

Beer should be Miller or Coors...unfortunately Budweiser is not on the list...might have to switch beers in this house. There are other places as well...just look for the light green "Give Thanks" campaign symbol while you are out and about. Thank you all for your support!! The kids of St Jude and more importantly us parents thank you from the bottoms of our hearts. Without donations like these, this awful journey could be easily worse when coupled with the stress of finances and costs. I hope none of you ever fully understand what I mean...

Jenn