Disney World...here she comes!

Team Avery leaves for Disney tomorrow morning courtesy of the Make A Wish foundation! We are so excited to see her experience this wonderful place and are really looking forward to the memories we will make. We are lucky enough to have some friends and family joining us on the trip and we can't wait to share this experience with them. No worries...we'll post lots of pics this week.

On Tuesday we were asked to be part of a St Jude fundraiser at KU and we met some fantastic college kids who were committed to raising funds and awareness for our St Jude kids. Avery was a hit of course and made lots of new friends. We even got invites to a basketball game from the players themselves...Avery gots da hook up...as apparently Jayhawk basketball tickets are a hot commodity. Being the sports fanatic that I am....I had no clue. We are so grateful that we are able to attend functions like this to help raise awareness and funds. We will also be going to a concert on Nov 13 with Montegomery Gentry here in KC that is for anyone that is a Partner in Hope....KFKF is sponsoring this event and you can check it out on their website.

We received fantastic news today about our friend Megan. She had scans yesterday and she was all clear! Avery and Megan were in treatment together at St Jude and she finished treatment in January. We are also so excited that we will get to see her this week as she and her family live in Florida. Our other close friend Belle, just completed her radiation and is now back home with her family. She is doing well and we are so happy she is done! A win is a win in the cancer world...whether its your kid or not....we count them all, celebrate hard and prepare for the next round. So cheers to our friends for hitting that next hurdle and for being strong enough to keep going. We love you girls!!

Jenn

2 months

It's hard to believe that its been 2 months since we whispered our goodbyes to our baby boy.  Time sure flies when you are wrapped up in the other crappy situation you seem to have been handed.  On Sunday, Jeremy and I went to a service the hospital had for families that have lost infants.  It was a nice service and a much needed reminder for us that we have not given ourselves the time to grieve for Jude the way we should have.  While it appears we may not be able to do that quite yet, it will happen at some point.

In the mean time we continue to pray for a miracle for Avery, for a an easy round on this chemo and for no fevers before we go to Disney.

Jenn 

New Chemo

Avery started the new chemo on Wednesday of last week.  We go everyday for 5 days in a row so tomorrow will be day 5.  We've spent the afternoons at Childrens Mercy getting a drug called Irenotecan.  It runs over about 90 minutes and so far hasn't seem to set her back at all.  We did have a rather uncomfortable bout with constipation yesterday.  Poor thing was miserable.  Luckily this drug causes the runs....so we've switched gears today and will now be dealing with the free flow fun that accompanies such things.  Hair loss is a likely possibility, as is nausea.  We will alleviate that with some meds so hopefully we won't have too many issues.  The plan is to do 2 rounds of this protocol followed by an MRI the first week of December.  At best, this keeps the tumors the same size and buys us some time.

Jeremy and I are doing the best we can.  Savoring every moment we can and trying to collect the memories of everyday life.  Some days are harder than others....sometimes we don't succeed at living the day like we should.  But we try and at this point that's about all anyone can expect from us.  We are both in agreement about what our next steps are in this journey though and that makes things a little easier to deal with.   The rest of the time we rely on Avery and her sassy little personality to put us back in our places.

We appreciate all of the kind words and support as we continue down this crappy path. 

Jenn