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Monday, November 28, 2011

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.


Thursday, November 24, 2011


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 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'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.


Thursday, November 17, 2011

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'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
Kay Jewlers
Dicks Sporting Goods
Old Navy
Crazy Eights
Nine West
Auto Zone
West Elm
Pottery Barn
New York & Company
Charlotte Russe
Ticket Master
Dollar General
Brooks Brothers
Anne Klein
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!

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...


Sunday, November 13, 2011

Round 2

Round 2 of this new clinical trial has been slightly bumpier than we expected.  Chemo was Monday through Friday and she seemed to do just fine with it.  Her appetite has been terrible since we started round 1 and it definitely has not improved with Chemo this week.  Yesterday was a bit rough for Avery and Daddy while I was at work.  The chemo she is on causes the runs and it kicked in yesterday.  By the time I got home she had had 3 baths and 4 outfit changes.  Needless to say the rest of evening was similar but became even more fun when we added projectile vomiting.  Poor kid couldn't keep anything down and just kept begging for water.  Then she'd puke it back up.  We broke down and gave her the Benadryl which of course resulted in a hyper little girl that still wanted WATER. 

This morning we thought we'd gotten past it as she seemed to be in a great mood.  She did really well until this afternoon when the runny poo started again.  Luckily we have managed to get her on the big girl potty half the time which results in a lot less mess and less outfit changes.  Other than that she appears to be feeling fine and even spent the afternoon playing outside with Emma & Lauren from next door.  How crazy is it that it's Nov 13th and it was 64 degrees out today? 

Like normal...the holidays are fast approaching and we find ourselves wondering what this year end will be like.  December 1st Avery will have her next MRI here in Kansas City.  We are praying that this MRI shows no growth in her tumors and no additional tumors present.  After this MRI Jeremy and I will need to decide how to move forward with her treatment.  At this point we are looking at all possible options and weighing the pros and cons out.  We once again are finding ourselves in a tough position, attempting to make the right choices for our daughter.  Please pray that we make the right decisions and have no regrets as we continue down this road.  Please pray for positive test results and minimal side affects for Avery with the rest of this round. 


Thursday, November 3, 2011

Disney World

Disney World was absolutely amazing!  Avery loved every single minute of it and we are so incredibly grateful to the Make a Wish Foundation, the Give Kids the World Resort and the rest of the teams that made this trip an unfogetable one for our family.  We are so lucky to have also had fantastic friends and family join us to make the memories that much more special...thank you Harper, Chance, Alex and Oliver for coming with us!  And also a big thank you to our friends the Parkers for driving all the way down from Jacksonville to see us.  It was fantastic to spend some time -- outside the hospital -- with all of them.

Avery starts chemo again on Monday -- 5 days in a row, this will be round 2.  Sadly her hair is falling out most of the pictures it looks wild and crazy because when it falls out it gets a bit of a lift to it and drops like a lab shedding his winter coat.  We are so sad to see it go -- that curly hair was really making us giggle.  Please pray we have no problems with this next round and that it does what we need it to do.


Jenn, Jeremy & Avery