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Sunday, December 25, 2011

Merry Christmas

The Christiansen family Christmas was a memorable one!  I sure hope everyone can say the same and that you all took a few extra pictures, a few extra moments, and a few extra hugs the last 24 hours...

We are so blessed to be where we are today, surrounded by the amazing love and support of our family and friends.  While we know we have it good, it wasn't until other Mothers on my Tumor Groups started sharing some of their struggles that I realized just how good we have it.  Yes we have cancer....but when it comes to other drama and chaos in our lives, we just don't have it.  We don't have to worry about hurting feelings, calling people back, or making sure to remember important dates....from someone who prides themselves on organization and social obligations - this is a huge pressure off my back.  Other families don't necessarily have it this easy.  So the next time I start to think things suck...going to pull that little one out of my back pocket.  We are truly lucky to be surrounded by such amazing people. 

Merry Christmas everyone...go ahead and pat yourselves on the back for a job well done helping out the Christiansens this year -- You deserve it.

Jenn

Sunday, December 18, 2011

Due Date



Yesterday was Jude's due date....the day we should have been celebrating 10 months of uncomfortableness rewarded by one beautiful, bouncing baby boy.  Instead we celebrated one more Saturday with Avery.  One we appreciate having more than anything. 

We celebrated Christmas with Nana and GJ yesterday and they brought down Great Grandpa Johnson too!  We had a great dinner and lots of fun watching Avery open some of her presents.  She has made it through this round with very little problems and we are so relieved.  Her counts have definitely fallen a lot lower than they did the first 2 rounds so we'll be more restricted this month and next.  Her hemoglobin was pretty low last week and although it wasn't low enough to warrant a transfusion, we are thinking when we go for labs and chemo on Tuesday we will probably be close.  She has been rather tired and whiny today and those are usually great indicators of low hemoglobin. 

A special thank you to all of those that have been so generous to us this year, especially during this time of year.  We have been touched by so many of you that have put our family in your prayers and offered up extra support to make sure that we have an absolutely perfect Christmas.  Avery will want for nothing for sure, and Jeremy and I were even able to give each other some nice things without feeling guilty.  Thank you from the bottom of our hearts...

Jenn

Monday, December 12, 2011

Next Step Started

I apologize for the delay in news...last week we were waiting for our team at St Jude to give us more direction on what we need to do next.  Unfortunately, once we got that direction I ran out of time to actually update you all.  As most of you can guess, we decided to go ahead and do another round of this chemo regimen.  So Tuesday we started the round and spent the last 5 days in the clinic getting meds.  So far so good.  Avery's appetite is still up and although the runny poo has started we are no where near where we were last round.  We are really hoping that the last round was compounded by the addition of a virus and that this round will look more like the first. 

Avery is in great spirits and in love with the puppies.  She is talking up a storm and putting 3-4 words together to  make sentences.  We can't believe how much she is talking in the last month.  Her favorite thing to say is "I Need...." so whatever she wants becomes " I NEED A COOKIE".   Course who can resist when someone tells you they need it? 

Christmas is fast approaching and we looking forward to celebrating another year with family and friends.  Avery is in for a treat as Daddy couldn't resist the Barbie Jeep and its opening and closing doors.  She loves to play in the car -- ok no one turn us in for that -- but the kid loves sitting in the front seat and playing with the dials.  We found out very quickly that she also knows how to open the doors - locked or not.  So the Barbie Jeep should replace the need to play in mommy's car.  It has doors that open and shut which should entertain her more than anything. 

As for the next round...not sure.  We will once again talk to our team in Memphis to see what our next move is.  For now - TAKE THAT cAncer!

Jenn

Friday, December 2, 2011

Heaven Earned an Amazing Angel this week...


One of Avery's biggest the champions has now become her Gaurdian Angel in Heaven.  Gerry passed away on Wednesday after a year long fight with the same monster that Avery has been battling.  During his fight, he held close to the fact that a small thing like Avery could fight this beast without batting an eyelash.  He was inspired by her strength and found courage in her determination.  As a result, he reminded us again why we are still battling this cancer and why so many of you believe in her.  

Avery's MRI was scheduled yesterday morning but due to a scheduling error we were postponed until this morning.  I found out that Gerry had passed just as we got to the hospital yesterday.  I honestly think it was the only reason I didn't light someone on fire for messing up the schedule.  As we left Jeremy and I were talking and we decided that maybe this was a good thing.  It gave Gerry a chance to talk up Avery to Him and for the rest of us to get some last minute prayers in.

Turns out Gerry is just as charismatic in Heaven as he was here on Earth...and us procrastinators got our extra prayers in...and it worked.  Avery's tumors were noticeably smaller, although all were still present and accounted for.  There doesn't appear to be any new tumors, which is a huge relief and her spinal fluid is showing no signs of cells -- although that's a fluke since it only takes a sampling.  What this means for us, we aren't positive yet.  We'll be discussing our options with the Dr's at St Jude and here before moving forward with any treatment.  Once we have figured out what that looks like, I will let you all know.  

forever grateful for our new Angel in Heaven...and all of our prayer warriors...

Jenn & Jeremy

Monday, November 28, 2011

hair today...gone tomorrow...

Two weeks ago I looked like this...


Last weekend I looked like this...
Thursday I looked like this...



Today I look like this...



This is the 3rd time we've watched that hair fall out and it never gets any easier...It makes me sad each time.  I can handle the puking and the runs, the not walking, the delayed talking, the hearing aides and missing teeth....but what I struggle with more than anything is that gorgeous hair coming out in my hands...all over her clothes, all over my shirt.  Silly I know -- it's just hair and thankfully she looks completely beautiful bald but it still gets me.

We had a great weekend with Nana, GJ and the puppies, as well as Grandma.  We even hijacked one of the puppies to stay with us.  Bear has been relegated to Avery Hug duty -- something the other dogs run from.  We've decided he's either too sweet or too dumb to run, but either way it makes Avery light up that he lets her hug him.  She is talking in 3-4 word sentences now and seems to be getting better at communicating every day.  We found out that she did indeed have some further issues over the weekend when they called to tell us she had a UTI.  Hoping this explains the continued crankiness and lethargy.  Another round of antibiotics, followed by some runny poo and we should be back to good.  

Thursday's MRI is at 11 am, however we don't expect results until Monday.  CMH tends to wait a few days prior to giving results because apparently radiologists have never experienced the fear and anxiety that comes with waiting for results like these...I'm sorry -- outloud voice there....CMH prefers to looks at all scans extremely well before releasing its report is what I meant to say.  We have an appointment Monday with the team at CMH to get results.  St Jude will also be getting a copy to review over the weekend and next week will have us meeting with them via conference call to make decisions about our next step.  As soon as we have news to share we will.  The options at this point are the chemo will have stopped the growth of the tumors and kept them stable, it could have done nothing and we will see larger and/or new tumors, or it could have shrunk them somewhat.  The first option is the best and most likely -- the last being very rare and unexpected.  However, as we've already seen with our journey - miracles DO HAPPEN and we DO BELIEVE in them....we've got a very special angel up in Heaven helping Him to see what an amazing girl we have down here that someday is going to do something very special in this world.  And with a team like you all to back that up....well there's just no telling what might happen.  

In the mean time -- Make Every Moment Count.

Jenn

Thursday, November 24, 2011

Thankful

Another year has passed since we were told Avery had 1 st relapsed. It's hard to imagine that it's been a full year. It was a hard year...but one we are grateful to have had. But here we are again...faced with the same devastating prognosis and trying our best to live every moment together to the fullest.
As we sat down to eat this afternoon with family, we could have been almost normal...kids screaming, asking for seconds, baby crying while one of us scarfes down food to switch spots with the mom...lots of stuffing and plans being made for Christmas. Oh what I wouldn't give to have moments like those everyday.
Fear is creeping in big time as we count down the days until her MRI next week. Did they grow? Is it getting worse? Is she in pain? What do we do now? How do we make every minute count? Answers don't come and the anxiety continues to mount. So for now, we try our best to not put off the plans we want to do and to take advantage of what we have now. What would you do if you were dying? How different would we behave if someone had given us a deadline? Isn't it funny to think that each of us is dying...it's just a matter of when. If someone told us the age in which your body would give out-- would that change the way you live now? Its inevitable I know but it's just not right for her to go before me and we are having a hard time dealing with it all.
So as you drift to sleep this afternoon (thank you turkey) I hope you have a chance to think about that...what would we do differently? What would we do better? Worry less about all the trivial things and spend the moments I can hugging, kissing and capturing the very best moments of her life...That's what we are doing.

Jenn

Thursday, November 17, 2011

Weight loss before the holidays

Avery's still experiencing the runs...poor kids bottom is red as an apple. Her appetite is non existent and for once her glucose was so low they had to give her sugar water! How this sweets addicted kid has low sugar is beyond me. The nurses literally handed me a pixie stick to dump down her throat until the IV kicked in with the sugar water.

Today we had her labs checked again to make sure her electrolytes were in order and she was good. She's been weak and snugly though so it makes us think things are still not back to par. This diahrea is really the pits for us all....lots of laundry, multiple outfit changes and a really sore Tooshie. Last month it was around for about a week so hopefully by Saturday we'll see an improvement. In the mean time, Avery has dropped from 28 lbs to just under 26 and that has us a little concerned. Back to the old people milk we so depended on to maintain her weight while we were at St Jude.

Speaking of....it's that time again. Shopping time that is. Many people have asked us what retailers are big supporters of St Jude so here are some recommended places to spend your money this shopping season:

Williams and Sonoma
Target
Kay Jewlers
Kmart
Dicks Sporting Goods
Old Navy
Gymboree
Crazy Eights
Nine West
Marshall's
Auto Zone
West Elm
Pottery Barn
New York & Company
Charlotte Russe
Ticket Master
Dollar General
Brooks Brothers
Anne Klein
Delta
Jared's
Claire's
American Airlines
Anne Taylor

And then of course after a long day of shopping...feel free to grab a bite to eat at one of these fine establishments!

Chilies
Dominoes Pizza
The Fox & The Hound
The Melting Pot

Beer should be Miller or Coors...unfortunately Budweiser is not on the list...might have to switch beers in this house. There are other places as well...just look for the light green "Give Thanks" campaign symbol while you are out and about. Thank you all for your support!! The kids of St Jude and more importantly us parents thank you from the bottoms of our hearts. Without donations like these, this awful journey could be easily worse when coupled with the stress of finances and costs. I hope none of you ever fully understand what I mean...

Jenn

Sunday, November 13, 2011

Round 2

Round 2 of this new clinical trial has been slightly bumpier than we expected.  Chemo was Monday through Friday and she seemed to do just fine with it.  Her appetite has been terrible since we started round 1 and it definitely has not improved with Chemo this week.  Yesterday was a bit rough for Avery and Daddy while I was at work.  The chemo she is on causes the runs and it kicked in yesterday.  By the time I got home she had had 3 baths and 4 outfit changes.  Needless to say the rest of evening was similar but became even more fun when we added projectile vomiting.  Poor kid couldn't keep anything down and just kept begging for water.  Then she'd puke it back up.  We broke down and gave her the Benadryl which of course resulted in a hyper little girl that still wanted WATER. 

This morning we thought we'd gotten past it as she seemed to be in a great mood.  She did really well until this afternoon when the runny poo started again.  Luckily we have managed to get her on the big girl potty half the time which results in a lot less mess and less outfit changes.  Other than that she appears to be feeling fine and even spent the afternoon playing outside with Emma & Lauren from next door.  How crazy is it that it's Nov 13th and it was 64 degrees out today? 

Like normal...the holidays are fast approaching and we find ourselves wondering what this year end will be like.  December 1st Avery will have her next MRI here in Kansas City.  We are praying that this MRI shows no growth in her tumors and no additional tumors present.  After this MRI Jeremy and I will need to decide how to move forward with her treatment.  At this point we are looking at all possible options and weighing the pros and cons out.  We once again are finding ourselves in a tough position, attempting to make the right choices for our daughter.  Please pray that we make the right decisions and have no regrets as we continue down this road.  Please pray for positive test results and minimal side affects for Avery with the rest of this round. 

Jenn

Thursday, November 3, 2011

Disney World



































Disney World was absolutely amazing!  Avery loved every single minute of it and we are so incredibly grateful to the Make a Wish Foundation, the Give Kids the World Resort and the rest of the teams that made this trip an unfogetable one for our family.  We are so lucky to have also had fantastic friends and family join us to make the memories that much more special...thank you Harper, Chance, Alex and Oliver for coming with us!  And also a big thank you to our friends the Parkers for driving all the way down from Jacksonville to see us.  It was fantastic to spend some time -- outside the hospital -- with all of them.

Avery starts chemo again on Monday -- 5 days in a row, this will be round 2.  Sadly her hair is falling out already...in most of the pictures it looks wild and crazy because when it falls out it gets a bit of a lift to it and drops like a lab shedding his winter coat.  We are so sad to see it go -- that curly hair was really making us giggle.  Please pray we have no problems with this next round and that it does what we need it to do.

Thanks!

Jenn, Jeremy & Avery

Thursday, October 27, 2011

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

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.

Jenn 

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 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

Friday, October 7, 2011

Tumors

I'm sorry for the delay...as 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.

Tuesday, September 20, 2011

Count Down Continues....Scanxiety Ahead.

After a weekend filled with lots and lots of cousins (1st and 2nd) and green snot...we have transitioned to the countdown phase a Cancer family endures the weeks leading up to the scans.  While this will forever be a part of who we are, it doesn't make it any easier.  Whether its every few weeks, months or even a year it will always be one of the hardest aspects of this road.  The waiting, the praying, the dreading, the hoping, the preparing, the crying, the pleading and the heartache are all part of the process that none of us should ever have to go through.  Amazingly enough, we get through the scans with either a pat on the back -- safe for now -- or a new plan...a new fight.  A year ago we made it through with a new plan.  One we never expected to be on that early in the fight, but one that we nonetheless started and a year later are still working on.  Its hard to think that 12 months ago we started yet again, a new chemo regimen.  One that we hoped would buy us some time, allow us to create some memories.  It worked and here we are with 12 more months of sweet memories -- not all as pleasant as one would like, but ones I wouldn't give up for the world.  Once again we've been challenged and pushed, and we've made it to the other side.

This scan will be the toughest one yet.  When Avery relapsed last fall, it was 3 months after treatment ended.  (even though technically she was still on a maintenance chemo)  This time we are 4 months off of treatment.  You can see the relevance of this scan and the panic attacks that Jeremy and I are having on a daily basis at this point.  While the last 3 months have been a fabulous relief on us, allowing us to bury our heads in the sand and pretend that our normal....was well, the norm, it's time for us to jump back into our reality.  Cancer is part of who we are as a family and something that will forever rear its ugly head and be a killjoy for us periodically.  It's not going away no matter how good she looks, talks, walks, thinks, etc.  It will always be there in the corner, threatening to jump out in front of us when you least expect it. BAM!  Welcome to being a Cancer Parent.

So while Avery continues on in her wild and crazy ways of being a toddler...Jeremy and I will be excusing ourselves at regular intervals to freak out for a few minutes alone.  Your jobs people,  is to pray - HARD and OFTEN - that October 3rd ends in a sense of relief, a pat on the back, and another 3 months of our heads in the sand....

with our gratitude,

Jenn

Wednesday, September 14, 2011

Green Boogers

For nearly 20 months now Jeremy and I have managed to avoid the ugly green boogies that so often are found streaming from the nostrils of the uncaring toddler...Today our reign ends.  Avery had a tough night last night that included some congestion, a lot of tossing and turning and a little bit of a fever.  For once, we didn't rush her to the hospital for admitance followed by at least 3 days of antibiotics and a negative blood culture.  We took the street that most of you take every time the boogeis show up.  TYLENOL.

While this was normal for once, something we've been craving for so long...I can't help but feeling a little guilty that I didn't call  Childrens Mercy just to be safe.  Technically she still has a line...which could mean an infection could have gotten in there...and a fever masked by Tylenol is the only symptom for a full blown blood infection.  So, if you get a chance - specific prayers that we made the right call would be great.  Selfish for us and her -- we really didn't want to ensue in the circus of a 1 am phone chase with the nurse on call, followed by an unnecessary admit to the hospital for 3 days, followed by a round of good ol C Diff.  Especially if the only reason she has green boogers is cause we took her to the circus and let her be a normal, germ infested kiddo for one night. 

I'm the only parent in that entire building that didn't leave with a $12 bag of Cotton Candy and a $19 stuffed animal - -don't ask me how, but she said  "no" when asked.  Smart kid...or really Smart Kid and she's choosing the time and place to throw a really really really big tantrum that ends in a really expensive toy?  Good Lord -- I probably just jinxed myself. 

Jenn

Sunday, September 11, 2011

Iowa vs Iowa State Game

Jeremy and I have supported the Cyclones for the last 12 years - regardless of their abilities.  The most important game of the season is always the rival game against the Hawkeyes and it brings out the best in our friends here in Kansas City.  We started a tradition 5-6 years ago watching the game at various houses and sporting our red and gold/ black and gold gear.  It's hard to believe that we've been doing this for that long....but I noticed this year that we get better at this coordinating the event.  And the older we get, the better the food becomes...In the beginning it was about the amount of beer and chips that we could muster.  Now, it's about coordinating the meal, making sure the best appetizers are available, and now of course - making sure we've given thought to kids and their entertainment.  Growing up can sure be surprising sometimes...

Avery was consoling our littlest Hawkeye over his triple OT loss to the Cyclones...someday they might be married and this will make a fantastic wedding video picture.

 
Count Down to Clean Scans....22 days to go...

Tuesday, August 30, 2011

Holy Hair!