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Thursday, October 27, 2011

Disney 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 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!!


Monday, October 17, 2011

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.


Saturday, October 15, 2011

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 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. 


Friday, October 7, 2011


I'm sorry for the most of you have already figured out, Avery's MRI was not what we were hoping for.  As a matter of fact it's worse than we could have thought.  Avery's scans show she has tumors in both her head and her spine.  Hard to believe considering the spunk and attitude, as well as the progress we see every day.  This is recurrence number 2.  At this point, the only hope for cure is radiation and at her age they generally avoid it at all costs.  They have learned, the hard way, that a child that receives radiation this early in life has devastating consequences through out the rest of their lives.  Jeremy and I are at loss...once again we've been posed the question of what to do with our child and once again we have to make a ridiculously hard decision with no help from anyone but our faith and each other.  This is even worse than feeling helpless as a parent.  At least when you are helpless, you have no control and can feel better about the outcomes.  When you are forced to make a decision, its something that you will live with for the rest of your life.  Why we've been chosen to walk this path I question everyday.  Why we continue to take hit after hit is something I'll never understand while we are here on this earth.  It's my job to have faith, to believe, to trust....but I gotta tell you -- this SUCKS.

We drove home on Wednesday night - desperate to sleep in our own beds, and to find some comfort in being home.  The night was restless for all of us.  We didn't sleep for obvious reasons.  Avery didn't sleep because we fed her chocolate covered doughnuts at 10:30 pm to keep her happy.  Yesterday we took her to aquatic therapy - which she loves.  So much, actually that we decided to get a short term membership to the local community center that has a fabulous pool for her to play in.  Afterwards, her and I went to see my acupuncturist - desperate times call for desperate measures.  After the lady lectured me on sugar (note chocolate doughnuts) in her diet and why it causes internal issues.... I watched as she did some massage therapy on Avery and the proceeded to poke her with needles.  Now keep in mind this kid gets poked - A LOT... so a few tiny needles should be nothing for her.  But she was actually a little ticked about it, however I quickly discovered that the irritation lay in the fact that we were holding her down rather than the needles themselves.   I was then told she would eat a lot, pee and poo a lot and then sleep a ton.  I don't know much about western medicine and I certainly don't know anything about eastern medicine, but wouldn't you know that kid has gone to bathroom so many times today it's ridiculous and her appetite was incredible today.  We've decided whatever can help her body in whatever way, we will do.  Oh and she slept like a rock last night.  Crazy Chinese Medicine is a go...

Today we met with our Oncology team at Childrens Mercy here in Kansas City.  It was disappointing walking back into the clinic after being away for so long.  Luckily the nursing staff still recognized her with all her hair. We spoke with our Oncologist and then another one that leads the Clinical Trial team at CMH.  Dr Neville will be taking us on as we've decided to enroll her in yet another study. This one is merely a time provider -- if it works.  It is out patient, meaning we will be taking her in each day to the clinic for a few hours to receive this new chemo regimen.  Normal side effects apply.  Vomiting, loss of appetite, drop in counts, and hair loss are all possible and likely.  Good thing she is planning on being Rapunzle for Halloween and I bought a wig.  Psycho cleaning Jenn and Jeremy will once again emerge, and we will be somewhat limited on visitors, especially sick ones.  It's been a fantastic break from those things these last few months, but back to the grind.  The hope is that this chemo regemine will give us as much time with her as possible.  Like the ICE treatment we did last fall and spring, this will not cure Avery.  It may not even help at all.  But we've decided to try it for the time being so we can squeak out every last once of time that we can with her.  From this point forward we will move forward making every moment count.  I suggest you do the same if you want some of those moments to include her.  We really thought that the treatment in NYC would have bought more than a few months...maybe a year.  It was a shock once again for us all, the dr's and the nurses included, that she had growth and actual tumors.  We have slid into a state of numbness again...

In the mean time, Avery continues to be her normal self.  Bossy and sweet, reserved and chatty all at the same time.  Strong willed is the term the therapists keep using.  We will continue to take her to therapies so we can increase her vocabulary and help us help her, especially in pain management.  Tumors can create awful pain in her head and spine as they grow and we need to make sure we manage that as best we can.  She has such a high tolerance to pain, and that makes it even harder to help her.  We are hoping we can teach her the difference so that we can manage it.  We are also going to make sure we do as much as we can with her while she feels well.  We've expedited her Make a Wish process and in 2-3 weeks we will be taking her to Disney World.  She has become so found of that "Tangled" movie we thought it only fitting we should go see Rapunzel in person.  Keeping busy will keep us sane, so we plan to pack as much fun as tolerable in over the next few weeks.  If you have any ideas - let me know. 

We have asked a lot of you all over these last 21 months...constant prayer, lots of fruit snacks, and a lot of finger crossing -- we ask that you continue as Jeremy and I really need it now.  A year ago they told us she wouldn't make it to Christmas without doing something aggressive.  Today they are giving us the same chances.  Miracles do happen, prayers do get answered...but God has the plan and we all just need to wait and see what it is...reality.

Jenn & Jeremy & Avery

Monday, October 3, 2011

Day 1 St Jude Oct 2011

Our first day at St Jude was pretty busy but not what we had expected.  They rearranged our schedule prior to our arrival so when we checked in at 7:30 am we found out they had changed our MRI to Tuesday and instead we had her hearing test this morning.  PT and OT were both canceled and moved to Wednesday so we'll be here a little later than we thought on Wednesday.  Her hearing test proved good.  No changes in her hearing.  We also met with the Eye Dr and will be picking out a new pair of glasses again.  They are strengthening her prescription again to help with that turning eye. 

We were able to spend a little time with our friend Belle and her mom Kelley tonight.  We haven't seen them since April when we were here last and it was really good to see some friends.  Belle is doing well and is going through the spinal/cranial radiation.  We had dinner at the Target House and met a new family whose daughter has Medulloblastoma and is currently on a protocol here.  It's strange to be the "tenured" family offering up advice and things to ask, but sure enough that is where we found ourselves.  As we walked in this morning there was a family checking in for the first time.  I couldn't help but think back to 21 months ago when it was us checking in -- desperate to be in a place that knew what to to, but scared to death about what lay ahead.  It seems so long ago, but at the same time just yesterday.

Jeremy and I are doing ok.  We are of course anxious about getting results, but at the same time very aware of what those results may mean.  We can't change God's plan.  We can only hope to someday understand it.  It may take the next 80 years for us to figure out why we've been chosen to walk this path and we are trying our best to trust in Him, really we are.  Wednesday has 2 outcomes for us and we are praying hard that we hear the news we didn't hear last October.  Once again we ask for all your prayers that the Dr's in NYC were able to push Avery into remission and that we can start moving forward as a family. 

Jenn & Jeremy

Saturday, October 1, 2011

Heading to Memphis

We leave for Memphis in the morning...Avery's MRI is scheduled for noon on Monday and her LP will be the following day at the same time.  Results are usually available the next day, so it will most likely be Wednesday before we have anything to share.  As soon as we know something, we will let you all know.  We appreciate all the extra prayers over the next few days...please pray that there are no cancer cells present in her spinal tap and that the MRI images are unchanged.  I think she is going to "wow"  the Dr's and therapists with her new found attitude and vocabulary.  Let's pray that these are a positive sign that remission is where we are headed.

Today we had a fantastic time at the Pumpkin Patch and at the Park. We had apple cider and homemade doughnuts and picked the perfect pumpkins for all of us, including a baby one for Jude.  Then we went to Shawnee Mission Park for a fantastic birthday party that included a hay ride and smores!  All in all and exhausting day, but she loved every minute of it.  A perfect day for the Christiansen family.