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Tuesday, June 2, 2015

Big Summer Start

The last few weeks have been full of excitement and anxiety for us. As a family we waited for the results of the chromosome tests on the new baby.  Luckily, they came back as negative for any of the more common chromosome issues, along with a strong heartbeat and a pink bow.  Then we anxiously waited for the end of our first year of Kindergarten - which was a BIG deal for a pretty excited (and newly deemed) 1st Grader.  Then we followed it up with a trip to St Jude for our 4 month scans.  They resulted in a stable read and graduation to 6 month scans.  May has been a whopper for this family and I am so ready for some relaxing summer nights and some weekends by the (plastic, inflatable) kiddie pool in the backyard, sans my margaritas. 

We have had a very blessed month and are praying for an extremely uneventful next 6 months as we await the arrival of our newest class act and Avery's next big set of scans.  She will be headed off to Cancer Camp on Sunday - another full week without us and total big girl camper stuff.  She is really excited for that and for the rest of the summer spent at the JoCo Parks and Recs program swimming and playing with all her friends.  She has made so much progress this year in so many areas and we couldn't be prouder.  Today the PT therapist at St Jude actually said the words "we will be walking unassisted at some point."  in 6 years no one has ever said that to us -- not here or at the KC Rehab Center or at CMH.  We were kinda dumbfounded.  She has also put herself back on the charts (albeit at 1%) but she's back on there...she weighed in at 35 lbs and 39 inches!  Holy crap.  Amazing a daily needle and some drugs will do for ya. 

Tomorrow we head over to meet with the Urologist to see what he has to say about her latest bladder study.  We definitely have not seen any improvement in this area so we are hoping he has some more ideas to try.  After that appointment we start the 9 hour journey home to KC to see Emmett and celebrate our month of wins!  Go Team Avery!

Jenn & Jeremy

Wednesday, February 4, 2015

MRI Results

It is with a huge sign of relief we share the news of a stable report.  The bleed in her pons is still visible, but stable.  There also appears to be  another small spot similar to this, but in a new area.  We expect to see more changes the further out we get from treatment and they will simply add to the list of things to watch.  There are a lot of things to watch  now, but as long as none of them are getting larger we are happy. 

It was decided that it is time to move forward with Growth Hormone for Avery.  At 6 years old we are only 31lbs and 39 inches tall.  In the last 3 years we have not put on much weight and hardly any height.  Averages for 6 years old is roughly 45.5 inches tall and 46 lbs  -- we are well below that and not even showing on the charts in terms of growth anymore.  From what we have been told, Growth Hormone is a daily shot that Avery will get until she is 18.  It is extremely expensive so we are starting the process of working with our insurance to get approval for this.  We haven't talked to her about this yet -- more specifically the daily shot.  The company that we get the Growth Hormone from will come to the house and show us how to do this, so at least we will have some training.  Been a while since I used my nursing skills.

Next scans are in early June and by then we should be able to see some changes in her if the GH works like it's supposed to.  We are excited for her to grow but at the same time nervous to loose our little peanut.  There are of course concerns that can come up with using GH and we pray that we for once have a smooth ride through this next phase of things.  We appreciate the hordes of prayers that have been sent these last few days as we waited out not only scanxiety, but the 5 year milestone that the statistics represent.  5 years ago, we were given a 25% survival rate for children her age with Medulloblastoma.  That means 25% of the patients her age (1 yr old) were expected to be alive after 5 years.  It hasn't been easy, and the cost has been high -  but we do not regret a single decision we have made along the way and owe our strength to all of you - our supporters for the last 5 years. 

Happy 6th Birthday Baby. 


Saturday, January 17, 2015


Today we are heartbroken.  We spent 6 long months with 3 other families at St Jude during those first months after Avery's diagnosis.  During our stay we became close with 3 families in particular, one being the Mitchells.  Belle was diagnosed with a rare brain tumor and like Avery was following the SJCY07 protocol at St Jude.  Belle experienced relapses like Avery and started down a similar path just months before us to include Radiation and further Chemo.  She continued to fight even after we were finally able to step back and breathe for a moment. 

This little girl captured the heart of so many with her giggles and energy.  Everyone at St Jude knows Belle.  Even at her hardest moments she always had a witty comment or sneaky smile for you.  Today she earned her very well fought for Angel Wings.  We are completely heartbroken. 

This hits very close to home for us and we pray for peace and solace for her parents and siblings as they endure the weeks ahead.  Pulling that brilliant character away from them is just devastating and I can't imagine the horrible emptiness they must feel after a 5 year battle with this ugly beast.

We are coming up on Avery's 6th birthday in less than a week.  Something we were told would most likely never see.  Frozen theme again this year.  We invited her friends from her class and we will see how that goes.  Then the day after her party we will leave for our next round of scans and check ups.  We could use some prayers for stable scans with regards to the bleed in her brain stem.  The MRI is on February 2nd and results will be given on the 3rd.  We will post as soon as we can.