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Wednesday, August 26, 2015

1st Grader

Well the first full week of school went well - Avery seemed to slide right into the swing of things and was very excited to see her classmates.  We have a new case manager at the school and so far I have been really impressed with her and how she works with Avery. 

Avery has been working hard on walking and balancing herself.  It's amazing what a little GH juice will do!  Her strength has definitely improved and we find her spending more and more time cruising on her own between walls and furniture at home.  At school she uses her walker 85% of the time and then cruises like a new baby learning to walk, within the classroom.  We still have a lot of falls and to be honest I have to close my eyes a lot as she tries to maneuver  - but knock on ER trips for stitches in the last 9 months so we are calling it a win. 

We are all anxiously awaiting the arrival of new baby girl Christiansen.  Believe it or not, I am really not swollen this time (although give it another week or 2 and I probably will be).  At this point I am not sure what will be more difficult...chasing around 2 toddlers with a huge belly...or chasing around 2 toddlers and an infant.  I guess an infant can be put down in a swing, so I am anxious for her arrival myself.  Little Sister is set to arrive on Halloween - or if I have my way, 10/18.  We'll see what happens.  Avery is busy practicing with her Itty Bitty so she can be a big helper.  Emmett is not interested in helping at all - although potty training has been the biggest help so far. (thanks nana!)  We were so not looking foward to buying 3 different sized diapers.  Luckily Emmett stepped up and figured it out these last few weeks. 

We are fast approaching the month of September - which happens to be Childhood Cancer Awareness month.  Going Gold is the "IN" thing to do and we ask that you support us as we plaster the page and FB with our message.  Childhood Cancer is the number one killer of our kids today.  Currently I can name 3 other kids that have been diagnosed with cancer since our diagnosis that we were friends with prior to being introduced to this world.  Are you kidding me?  These aren't people we met after our diagnosis.  These aren't families we met at St Jude or on the Oncology floor at Children's Mercy.  These are 3 families that we have dinner with, drink beer with, watch our kids play with... oh and that we now have had to share our expertise with in the world of what has now been deemed our "new normal."  September is our chance to scream louder than all other months for more funding for research and better treatments for the future generation. 

With that said, we will be participating in a lot of Children's Cancer activities this month - but the one we have decided to ask you all to join us on is the St Jude Walk.  This year they have moved the walk to September 26th -- a big change from the end of November that it has been on in years past.  Location is still at Power & Light on that Saturday morning (9 am walk starts, registeration opens at 7:30am) and as always, we want to show Avery that we stand beside her, even when she isn't in the throws of treatment.  Every day is a struggle for will never be easy, and she will always have deficits that keep her from being like the other kids.  As she gets older these will be more obvious to her and will start to affect her psychologically as well as physically.  So please join us - it's a short mile walk in nice weather and she loves to see everyone.  Whether you join the team online, donate to St Jude on her site, or just show up the morning of -- we don't care.  Someday we want to look back and show her what an amazing support team she had all those years - even after the active treatment ended, because for her it hasn't ended...its been replaced by therapies, daily shots, new drugs, special ed classes and adaptive learning styles. 


Much love,

Jenn & Jeremy

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.