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Tuesday, January 12, 2016

Boo Yeah!

Avery with her doctors at St Jude


Well she did it again!  Another stable scan with no new growth or scary looking new spots.  All of the prior "schmutz" is there and the same as our last scan,  which in the cancer world is about as good as it gets after treatment.  She continues to amaze us and her doctors.  Prognosis at diagnosis was less than 25% after 5 years.  Here we are,  6 years from diagnosis, 2 relapses and nearly 4 years off treatment.  To say she is the exception to the rule is obvious...we are so stinking proud of our warrior!  

Boo yeah cancer!  You can suck it.

6 more months of living it up!

Jenn & Jeremy


Sunday, January 10, 2016

6 Month Scan


It's hard to believe another 6 months has passed already, although the fall/holiday festivities always seem to fly by so quickly.  In just a few days,  our little fighter will be celebrating her 7th birthday and hopefully another stable MRI report.  

One of Avery's favorite things to do is watch old videos of herself on her iPod.  The other day she showed me one of her coming down the stairs at the house.  It was a simple video-I had asked her to put on socks and a sweater all by herself and she came downstairs having done so (although the cardigan was on backwards).  As she comes down the stairs she is telling me about it and then gets distracted by seeing her helmet on the table.  Her speech is slower and less pronounced and it's obvious she has hearing issues as her pronunciation for "helmet" comes out something like hemu. The video honestly left me speechless for a few seconds.  I had to stop and breathe,  before responding with the appropriate, high pitched "oh look at you baby girl!!  Look how little you were!"  That I know she was looking for.  How could that have been 2 and a half years ago?  It really put into perspective how far she has come these last few years.  Something I tend to forget as she struggles to write her letters and memorize her sight words and use the restroom.

She loves those pictures and videos of herself and for the first time I think it hit me that she is proud of herself for getting so big...something I never realized.  As we make our way down to Memphis today, I find that gnawing feeling of scanxiety return and the dread that the trip always brings. This will be the longest we have gone between scans and although she is asymtomatic and we have no reason to expect anything but a stable report, I can't shake the fact that cancer follows no path, no rules, no predictable state and can rear its ugly head at anytime.  The last few months we have watched many families say goodbye to their warriors or strap on the gloves to fight the beast a second or third time.  So we wait with bated breaths for our scan and results on Tuesday...prayers for stability would be so appreciated...

Jenn

Saturday, October 10, 2015

Annual Pumpkin Patch Fun


Our annual outing to the pumpkin patch was a success!  Donuts and Cider followed by an exhaustive display at the ever changing landscape known as Johnson Farms.  We've been hitting up this local favorite since we first got back from St Jude in 2010.  Each year they add a new element or attraction and this year they added Big Wheels and Birthday Parties.  To say I am excited is an understatement.  I mean - who doesn't like big wheels?  And well Quinn is prime for a pumpkin patch birthday party! 

Trekking around a pumpkin patch 37 weeks preggo comes with its perks -- no lifting heavy pumpkins and guaranteed nap for momma later.  The kids picked out a haul including one for baby Quinn who is set to make her debut sometime before Halloween.  (preferably sooner rather than later so I can have pumpkin beer with the neighbors while trick or treating).  The kids can't wait for her to arrive.  Emmett has become quite the doting big brother to his new baby friends and daycare and in particular loves the baby girl there.  Avery has always loved babies as many of you can attest and swears she will bring me diapers, wipes and burp clothes whenever I ask... we'll see how much that actually happens.   Jeremy and I are anxious for her to arrive, him because he worries about being outnumbered and wants to make sure we can handle it.  Me because I am done with this big belly and general uncomfortableness that accompanies being pregnant.  All said - we can't wait for her to arrive. The countdown has begun...

September was a great success for us and all the families in the Childrens Cancer world.  The St Jude walk was a big hit being in September (even it if was 3 miles instead of the 1 mile I had thought).  Team Avery raised over $4000 and we couldn't be prouder.  Next week Avery will be on the local tv morning show as they choose the winner of the KC St Jude Dream Home.  The show is airing at 10:30 on Thursday so that should be fun.  If you haven't had a chance to buy a ticket - I totally would.  $100 can get you a $400K home in the KC area, right on a little lake -- its amazing.  Summit Homes is the builder and the house is freaking beautiful.   Bradens Hope Gala was also a huge success raising half a million dollars towards research grants for childrens cancer -- for its 4th year - this gala has sure done an amazing job.  That means 5 different trials/research teams will be able to keep going, getting us closer to better options for curing these kids.  I am in awe of what this local family has managed to do in such a small amount of time.  It just goes to prove that we can do it - with or without those big pharmaceutical companies.

We have also been blessed to have met some very amazing families along this journey and to have some that are right here in Kansas City.  The kids and the parents that belong to this special group are the toughest of the tough and the solidarity that is formed when one of us needs help is awe inspiring.  It's a club I pray none of you ever have to join, but we are so honored to be a part of it with these amazing people.  Even 3 years off treatment...no longer in the thick of chemo and puking, low counts, and ports.  Avery's deficits are many and her struggles are daily, but she is here and still fighting and worth every ounce of effort and prayer that all of us (you included) have put into things these last 6 years.

So as the pink ribbons come out and we move our focus on to the TaTas (which are just as important)...just remember that September being over doesn't mean the fight ends for families of childhood cancer....its just as hard, just as unfair, and just as unbearable to watch a child who hasn't lived, who hasn't grown, who doesn't know any different fight this ugly beast.  Thank you to everyone that continues to support us and this fight - 365 days a year.   We truly appreciate it.

Jenn & Jeremy