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Wednesday, December 26, 2012

Christmas Pics

The Holidays

Well they once again went by in a blur...

It never fails to amaze me at how quickly we jump from September to January each year.  With Football, Halloween, Thanksgiving and Christmas all wrapped up together closed out with Avery's birthday it just seems to fly by.  It's hard to believe that January is knocking at our door.  2012 has been a better year for us by far, although not the perfect one we had hoped for.  2013 has to be better, although with 2 kids in daycare and the Fiscal Cliff looming, I'm not sure how much better.  We will continue to be so thankful for the time He has given us together as a family no matter what.  Come what may.

We sure hope everyone had a fantastic holiday season.  We were able to drive  up to Iowa for a weekend and celebrate with Jeremy's family - something we haven't done in 2 years.  Next year we'll work on hitting up the MN promises though as my job does not allow for vacation time during year end.  Tax returns and W-2s will consume my thoughts for the next 3 weeks as my team works their tushies off to get it all done.  Jeremy however is working the opposite end of the spectrum....his slow season.  Luckily, he is able to stay home with Avery and Emmett while they also have time off from school, rehab and daycare. 

Santa was good to the kids again this were family and friends.  Emmett is stocked up on formula and diapers - per our request.  This kid is huge!  And formula isn't cheap!   We go in for his 4 month check up at the beginning of the month and I swear he will be in the 95% for everything.  He also scored big on John Deere tractors...and not the plastic kind either.  I'm not sure who was more excited....that's not true, I'm pretty sure Jeremy was doing everything in his power not to rip those packages open.  He must have gotten 10 of them.  It totally does not match with my Swallow inspired nursery theme...Boys.

Avery loves her books and puzzles which are both fantastic for her and her cognitive skills.  Today I caught her reading a card from the St Jude team and she recited the spelling of her name while she did it.  It didn't actually say her name on the card, but she readily read off A V E R Y  as she looked at it.  Once again, she proves she's smarter than we think.  The biggest excitement of all came with her gift from Santa.  She told Santa she really wanted a Tree House for Christmas and she's been very consistent all month about it.  We decided she probably meant a play house and sure enough that was what Santa brought her!  She absolutely loves it.  Its sturdy enough for her to pull herself up on and Daddy even put up some touch lights inside so she can see her dolls and make cakes in her little kitchen.  We had to rearrange the "office/playroom/nana suite/library/office/guest room" that we call the 4th bedroom, but man it was worth it to see her face light up like that.  Sorry Nana.

We spent Christmas Eve together as a family of 4 and it was very relaxing.  We hit up a local favorite Mexican restaurant where Avery proceeded to dump her root beer in my lap, the sugar packets all over the floor, and then point blank looked at her Dad and said "No!" when he told  her to sit down.  Seriously?  What do you say to that?  It was all Jeremy and I could do to not laugh...our life finally resembles normal.  Something we have been so desperately seeking for the last 3 years.  Our soon-to-be 4 year old was being a menace and while its exasperating to no end -- it gives us a sense of relief.  We ended the evening with a drive around the neighborhood in the mini van checking out the lights. live the life of a soccer mom...someday.

One of our favorite things to do during December is hang our Christmas Cards in the entryway to the living room.  Each year Avery looks through the pictures and cards and identifies who she knows.  We keep them and look at them each year and she loves it. I guess it gives me a sense of all of our friends and family are close by should we need them.  I am hard pressed to take them down at the end of January.  The New Year will be rung in on the mellow key again this year.  Last year we had the neighbors over for a bit and I am sure this year will be much of the same.  Someday I swear we will get cool again, but for now we savor the moments with Avery and Emmett...and maybe a glass of wine or 2 as we welcome 2013.  Like a lot of you, we are nervous to see how this Fiscal Cliff thing pans out for our budget.  Its amazing what happens when you add another day care expense.  We figured out we pay more for our daycare than we do our mortgage so that being said, we should have had a lake home by now!  Stupid college loans.

Avery's Birthday is right around the corner.  Followed closely by our next trip to St Jude.  We go down in mid February for her next follow up scan.  The Dr has indicated that we shouldn't expect to see any further shrinkage as we are too far out from the radiation.  Our prayers are for Stable.  That means, nothing new and nothing bigger.  Continued prayers for positive results are what we need to keep moving forward.  It really has felt like we were at such a stand still for the last 3 years.  The 29th marks our 3 year anniversary from diagnosis.  A day we will never ever forget..."I'm not going to sugar coat this, Avery has a tumor in her brain."  The second day I will never forget was the day we discovered the 5 year survival rate of a child under the age of 5 with Medulloblastoma is 25%.  That means that 5 years after diagnosis 25% of them are still alive.  75% of them are dead.  And the scary thing is that another 35% of the ones that survive 5 years will die within the following 10 years.   Like Avery, they will suffer serious neurological damage, delayed cognitive function, depressed thyroids, stunted growth, impaired hearing, speech and vision and an overall dysfunctional development.  Not to mention issues with their hearts, secondary cancers and the return of the original cancer.  I'll take every one of those issues as long as she is here with us.  Every day with her is a victory in our book and we'll take it!  Stupid cancer.

Here's to the New Year - to a better year!  Make it count.


Tuesday, December 4, 2012

3 Months Old

Monday, November 26, 2012

Thanks & Giving

Team Avery at the Kansas City Give Thanks Walk

We hope that everyone had an absolutely wonderful Thanksgiving weekend! Our last 2 weekends have been spent with some of our greatest friends and family.  It was terrific to catch up with our friends and of course see Nana, GJ and Grandpa Randall, as well as Avery's cousins!    The turn out at the Kansas City St Jude Walk was good and can only improve each year as news of the event grows.  We were so proud to be a part of it and to see the 5 other families from the KC Area that are also patients/were patients at St Jude.  Team Avery was well represented and we are so appreciative of all the people who came out to show their support for Avery.  Our journey is by no means over, and for the next umpteen years we will continue to make trips Memphis for Avery's treatment and medical issues.  We pray daily that the radiation has given us back the gift of time and a future, all the while knowing it has also given us a lot of obstacles and permanent issues that will affect our lives forever.  Things we will gladly take if it means sharing the next 50+ years with Avery.

It's hard to believe that we are coming up on the 3 year anniversary of her diagnosis.  It seems like forever ago and at the same time like just yesterday.  Next week we start taking Emmett to Avery's babysitter from when she was a baby.  I'm excited  because I have this false sense of security that Jeannie knows all and can identify problems before I can since she is the one that urged us to take Avery to the Dr to start with 3 years ago.  It also takes a load off our minds in terms of not having to worry about taking him to a stranger.  Now if I can just master the art of getting 2 kids that can't walk on their own out the door before 7 am...I'll be awesome.

It's terribly sad for me to say it...but I am really excited my baby girl is going to have hair this Christmas...she's still missing her two front teeth  - but man, hair in the middle of winter is AWESOME. As always, this time of year sure flies by...soon enough it will be January 21st and Avery will be 4 years old.  Crazy.  A reminder though, to those who never stop and take it all grateful for today, you just never know what tomorrow could bring.  Cliche?  Yes.  True?  Hell Yes.


Thursday, November 15, 2012

St Jude Give Thanks Walk

St Jude Walk: Team Avery

Only one more day left to sign up or donate to the St Jude Give Thanks Walk.  We are very excited to report that Team Avery has contributed over $3000 to the kids of St Jude.  Kansas City is doing a fabulous job in raising funds and is close to hitting their goal of $50,000.

Saturday will be chilly - there's no doubt about that. If you are able to come, please dress warm!  We plan to arrive between 8:30 and 8:45 am and the walk starts at 9:30 am.  We will be wearing black and as much skull and crossbones gear that we can find, and we'll have a Team Avery sign with us.  If you can't find us, give my phone a call or text and I will tell you where we are.  Since this is our first year, I can't give a location yet on where we will meet.

We sure appreciate the support and are very excited for Avery to see all those people again walking for her and her friends at St Jude.  She's over a year older than the last time we walked for her -- I am hoping she will understand things a little more and feel all that love and support that Jeremy and I feel at an event like this.  We can't do what we do without the prayers, love and support of all of you....and of course without the amazing direction and care from St Jude.  1.6 million dollars is what it takes to run St Jude for a day...While we didn't quite hit that, I am pretty darn proud of what we did!


Saturday, November 10, 2012

November MRI

Avery's MRI final results came back stable.  Tumors are still present but they are stable.  The LP was clear of cancer cells and her spine is clear.  Thank you all for the continued's to 3 more months on normal.  Or our new normal...


Monday, November 5, 2012

Heaven earned 2 new angels this week...

Our hearts are heavy today as we learned that 2 more little girls earned their angel wings within the last 24 hours.  We posted about sweet Alivia a few weeks ago and sadly she flew home to heaven yesterday.  It's heartbreaking and devastating and oh so not fair.  As we sat in clinic today, I watched a hospice nurse sit with a mom and her son talking before his pain meds finally were ready and she could change them out.  It was all I could do to not lose it right there...

It makes me angry to see all these families here...knowing they are starting this awful journey...and that many of them will end up saying goodbye for now.  Knowing our journey has been rough and long and that it is no where close to being over...easy...normal.  Tomorrow is our MRI and LP.  To say we are scared is an understatement.  The last 2 Octobers have brought us horrible news...and while we are now in November, we know the chances are there that we avoided October's routine crappy news only to push it into November.   This is our reality.  Every day.  Every hour.  Every minute.   She looks good on the outside.  She's learning and thriving and driving us nuts...but internally we know things  could look very different.

So tonight we pray hard ...very hard.  Cause the Christiansen's could use a little break...and Avery is amazing.  Enough said.


Monday, October 29, 2012

Team Avery St Jude Walk

Scanxiety is back as we prepare for our next set of scans next week.  We leave on Sunday for 2 days in Memphis...hopefully 2 rather quick and painless days.  Avery will have an MRI and LP as well as her other check ups.  She has been feeling well the last few days so we are hoping for a quiet week.  Course thats not counting the pumpkin carving and trick or treating in the next 2 days.

I will post photos on Wednesday but Avery is very excited about the Candy she's been told she will receive while trick or treating.  We've been working on the "trick or treat" but so far all I can get her to say is "TREAT".  Her and Emmett are going as Minnie and Mickey Mouse and I am very excited to see them in their costumes. 

It's getting closer to the St Jude walk and we are excited to see Team Avery pull together again.  If you are interested in joining us on the 17th please register on the website to the right.  Its free to register and walk, but of course the point is to raise funds for St Jude so if you can spare $5 that would be fabulous too! 

Date: November 17th, 2012
Registration: 8am
Walk: 9:30am
Location:  T Bones Club out at Legends

As soon as we get scan results I will post.  Praying for no spots, no cells and no growth...


Sunday, October 7, 2012

Pumpkin Patch

I apologize for the lapse in posts...although from what I hear many of you are not getting notices of my new posts anyway.  I have scoured the web page settings and asked the forum about this - but no one seems to know why that would be happening.  My only thought is that google adjusted something in their GMail accounts and those of you not getting the notifications probably have some setting set that needs to be un set.  Or something more technical than that - but you get the gist.  So if you are one of those people, I would take a peek at your google settings and gmail settings to make sure notifications are being allowed. 

Its been a busy last 2 weeks for the Christiansens as we have attempted to adjust to the new schedule and the new addition.  Avery's weekly schedule includes 2 days a week at preschool and 2 days a week at Rehab and one day a week with Mommy.  I think we've all been seen by at least 3 dr's in the last few weeks as well.  We did meet with the Urologist - not impressed with the current plan, but apparently don't have an option.  Avery is extremely backed up from the meds he has her on, and that causes UTI's.  However, she has bladder spasms as a result of her radiation and needs those meds.  So in essence we've been told to regulate her diet and get her constipation under control.  Yeah right.  Who regulates a 3 yr old's diet?  She eats exactly 4 things.  Mac & Cheese, Cereal, Peanut Butter & Jelly, and Chicken Nuggets.  Oh wait -- and anything sweet.  My kid is not going to eat black beans and fiber one...Oh and still manage to maintain or gain weight since her skinny little butt is barely holding on to 27 lbs.  Needless to say we are annoyed.  So we've added Miralax daily to her regimine and as a result have had continued blow outs for a week.  Nothing better than 2 kids that blow out their diapers.  Someday we might actually get to potty train her. 

Today we took the kids....weird saying the pumpkin patch.  She of course had a blast and loved the animals and hanging with her buddies.  We also hit up the apple place for apple cider and fresh doughnuts...which of course she loved (cause we love anything sweet).  Fall has definitely arrived and abruptly!  But I'll take this over the 101 degree days for sure!  October is always a crap month for us...we just hope that we haven't jinxed things and made November a crap month instead.  Avery's next trip to Memphis is on November 5th.  We'll do another MRI/LP and check out all her other items....hearing, vision, therapies.  We are starting the prayers early this time as we are very nervous about this scan.  Please add her to your lists. 

Please also add another St Jude Warrior to your lists - Alivia is her name.  She was in radiation at the same time as Avery and she is 3 yrs old.  On her follow up visit with St Jude this month, they were given the devestating news that Alivia's battle is almost over.  She was diagnosed right after Christmas this past year with an inoperable brain tumor with no chance for survival.  Radiation was done to give her and her family as much time as possible and they have had 7 amazing months as a family.  But let me tell you this -- no amount of time is ever enough.  Being grateful for every day you get is so easy to say to someone who is under the impression they have all the time in the world.  To a mother who knows that time is limited -- its never enough.  My heart is breaking for this family as we watch them go down this path, knowing so well that we are so close to the same path.  As we get into some sort of "routine" I am constantly reminded that in an instant we can be slapped back into the reality that is ours and will continue to be no matter how "GOOD" Avery appears to be doing.  That constant fear is in the back of our minds every second of every minute of every day.  It only takes one crappy update on one kid, one tv show with a kid dying, or one mention of the kids of any one of the hospitals that we have utilized to send us back into that spot.  Heck the TATAS this month freak me out.  My daughter wants nothing more than to get those boobies to want to save.  I literally had to fight her for my nursing bra this morning and she had me in tears cause she wanted so desperately to put it on.  Reminders of what this nasty beast can do to not only a child, but the family that surrounds them.  Alivia is a fighter and has lived her 3 short years impacting a lot of people around her.  She is vibrant and will make the most amazing angel.  So please say a prayer for her and her family, for a quick and easy transition into her new role with God and for peace for her family as they accept God's plan.  No child should ever have to suffer the way Alivia and Avery have...


Tuesday, September 25, 2012

3 Weeks Old, 2nd Week of Preschool

Well it's been 3 weeks already since Baby Emmett arrived and I was worried he wasn't gaining the weight he needed so while at the Pediatrician for Avery's most recent Cath and UTI confirmation on Monday, I asked the nurse to weigh him.  Not to worry people...the chubby cheeks are being fulfilled -- he weighed in at 9 lbs 10 ozs.  ARE YOU KIDDING ME?!  We've obviously outgrown the newborn clothes and are filling out the 0-3 months quite nicely. 

In case you missed that mention above, Avery has yet another UTI.  Urology is in for a treat on Monday when we go for our 3 month appointment.  I called them after our UA was confirmed positive and let them know they had a week to start researching causes and a plan for Avery moving forward.  I don't want to spend our appt talking about the past, I want to move forward.  The last thing in the world this kid needs is to deal with a burning pee pee everyday.  They need to figure out why her reflux is causing repetitive UTI's and fix it but fast.  Psycho mommy has not been around for a while but she will be showing up Monday - guaranteed.

Avery went back to Preschool after yesterday's Dr appt and seems to be warming up to the kids in her class.  She tends to get overwhelmed in crowds...especially when the crowd is filled with friendly, curious 3 year olds!  I think her class is getting used to her walker, hearing aides and braces and she is losing the excitement that made her the center of attention.  Good thing for her as she takes after Dad in this area...

We are very excited for fall's arrival.  So much to do in Kansas City and no scans in October!  I am honestly so thrilled to not be going to St Jude in the month of October.  Even though we have to go back at the beginning of November, the thought of being there in October scares us to no end.  We have big plans for the next month that include football games, fall festivals, the pumpkin patch, and the apple orchard.  In mid November we will also be participating in the Give Thanks Walk out at Legends.  Team Avery is starting to rally up and will be walking on November 17th to show our love for St Jude.  Should you want to join us, look to the right and  click on the "Give Thanks" link.  It's free to register to walk with us, however should you have a few extra dollars to donate to the hospital please do.  St Jude has given us so much -- most importantly time as a family, and we will be forever indebted to them for allowing us whatever time we may get.  November will be here before we know it -- you all know how fast the fall please join us on November 17th. 

Thank you to everyone that ate at Chili's yesterday!  Chili's is a huge supporter of St Jude and has raised millions for the hospital.  Proceeds from yesterday all go to the hospital!


Sunday, September 16, 2012

My New Baby Brother Emmett

Saturday, September 8, 2012

Baby Emmett Has Arrived

Well, it's been a crazy week for the Christiansen's and we apologize for the delay in info.  As many of you have figured out from my Facebook Posts -- Emmett Joseph was born early Tuesday morning.  Weighing in at 8 lbs 15 ozs and 21 inches, he is one big boy!  Monday we went in to the hospital because I was having some upper quadrant pain that I just couldn't seem to shake.  After 4 hours, a lot of tests and a pain killer, we were sent home with a smile and a dilation of a 1 that was generous as the nurse knew how desperate I was to go into labor. 

Disappointed we drove back home disagreeing about what we should have for dinner.  Preggers wanted mashed potatoes, corn and gravy with honey biscuits - so luckily Jeremy was willing to accomodate and I stuffed myself quite nicely.  While doing dishes I started to notice that my Braxton Hicks contractions that I had been having for weeks appeared to be coming more frequently and were really starting to hurt.  Since I've never actually gone into labor on my own I was really at a loss as to what was real and what was not.  I decided I'd better shower in case I did end up going to the hospital.  So while I did that Jeremy gave Miss Avery a bath and packed a bag for her.  By the time I got out of the shower I was pretty sure we were at least starting the real thing as I was in pain and the contractions were about 3-4 mins apart.  We called the dr again for the 2nd time that day and waited for her to call back.  In the mean time, we had the Maskers come and pick up Avery and we finished getting the car packed.  By this point, it had only been 3 hours since we'd been told to go home. 

By the time we got to the hospital and they got us into a room I was in some pretty decent pain.  They checked me and low and behold I was at a 4!!  We were right!  Things moved pretty fast after that and by 2:40 am we were the proud owners of a brand new 8 lb 15 oz baby boy!  Emmett was LARGE and required help coming out because of his broad shoulders, but he made it!  We were shocked to have delivered such a big kid - Avery was only 5lbs 9 ozs, so we are in for a treat.  Newborn clothes are at their max already...

Tuesday morning the nurses had some concerns about Emmett's glucose levels and we were quickly told they were going to admit him to the NICU to start an IV and get some sugar into him.  Apparently larger kids have a harder time getting enough sugar after they are born to balance out their insulin levels.  Once again, we were forced into not having a "normal" experience and let me tell you that just about put us over the edge.  What really sent us over was the call we got from Nana that evening telling us Avery had started running a fever and wasn't feeling so hot.  Fevers still put us into the hospital, so off Jeremy went as I called CMH from the NICU to talk to the Oncologist about Avery.  Needless to say she was admitted and they tested it all. She was found to have another UTI, Strep, and was so constipated they had to do an x ray to see how bad.  She and Jeremy were admitted and started on antibiotics as well as a big dose of miralax and fluids to get her cleaned out.  Not exactly the way I pictured celebrating the birth of our 3rd child, at 2 separate hospitals, but as we all know we are not in control of any of this. 

Emmett had 2 days of needing the dextrose iv to help him maintain his levels.  His iv line blew on Thursday night and they decided to wait and see what his levels did before replacing the iv.  Luckily his body was able to maintain.  Slowly over the last 3 days, his glucose levels have come up to a more acceptable level.  Today the Dr's finally decided it was ok to discharge him.  We are ecstatic to be home.  Avery is feeling a lot better, although we've now hit the other end of the spectrum and lets just say Nana has been doing a lot of laundry.  Hoping to get that issue plugged up here soon. 

Avery is in love with her baby brother.  She has been very helpful and motherly towards him - so far so good.  We've only had one issue of jealousy and it involved Nana...apparently Avery is not quite ready to share her Nana with her brother yet.  We didn't get to watch the Iowa vs Iowa State game today, but we made sure the kids were supporting them from the hospital and home anyway -- NICU or not, Go Cyclones!


Thursday, August 30, 2012


The lumbar puncture came back as all clear.  We are very pleased with the results.  Now we can sit back and enjoy the arrival of this big boy!


Saturday, August 25, 2012


Jeremy and Avery made it back late last night from Memphis, luckily no Emmett had arrived yet.  The trip was short but drawn out and they were both happy to be home.  We didn't expect to get results yesterday, but they put an appt on their schedule to discuss with our Dr late yesterday afternoon.  Panicked, I listened over speaker phone as Dr Armstrong explained to us the preliminary results of the MRI.  All 3 spots appear to have decreased in size.  Now what that means we aren't exactly sure.  Are they all tumors still responding to radiation?  Are they damage from radiation now healing itself?  Is it necrosis?  Bottom line is they don't know, but they are more comfortable going 3 months before scanning her again based on these results.  The final report will be out next week along with the LP results.  Please pray those are clear as well.

For now that means we get to spend the next 2 months pretending cancer doesn't exist before the scanxiety kicks in again. A very welcome escape considering the pressure this last month has put on us.  Nothing like waiting for the other shoe to drop.

  Awesome job to all the prayer warriors out there!  You all really rocked it this time!  Keep em coming....this time let's add "2 pushes, early delivery, fast labor,  and sleeps through the night" your list...just saying if you have extra time.  We are ready for Emmett Joseph to make his debut!


Thursday, August 23, 2012

MRI Friday

I just dropped Jeremy and Avery off at the airport.  I am sick to my stomach and the test isn't even until Friday morning.  We are hoping to have results on Monday as we all know what happens on Friday afternoons at a hospital...nothing.  Avery will have her thyroid levels checked today and new braces fit for her ankles.  Other than that - today will be a lot of sitting around with Daddy. Not that Avery minds - plenty to do at St Jude if you are feeling well and can be around a few germs.  We are curious to see what her ANC has done over the last 4 weeks without any type of issue to mess with it.  I think we may have finally kicked the UTI cycle. 

I really don't know what to expect. Obviously the worst is always a possibility.  In my head I'm hoping for no change, and a "let's watch these spots" type response.  In my heart, we are believing we can get the all the clear - tumor gone, weird spots gone, no cells present in CSF...go home and see you in 3 months.  So for all of our prayer warriors out there....get to work!

Oh and it would be nice if Emmett would stay put the next 2 days.  After that, fair game.  My cankles are bigger than my thighs at this point -- its not pretty people.


Sunday, August 19, 2012

Happy Birthday Jude!

It's hard to believe that an entire year has gone by since we said hello and goodbye to our little baby boy. Yesterday was a tough day for us as a family, but we put on our smiles and made the day what we wanted it to be....a celebration of an amazing little life that we will one day be a huge part of.  For now, we talk about him and picture him in Heaven with Mia (the dog) and hold on to the fact that one day we will be together again. 

In celebration of Jude's 1st Birthday, we decided he would have liked to eat at the T Rex Restaurant, so off we went to enjoy the overly priced, poor tasting food they had to offer.  Avery absolutely loved the place, although was petrified by the large T Rex in the front of the restaurant.  Luckily we were seated by the plant eaters for dinner and she thoroughly enjoyed that. 

After dinner, we sang him Happy Birthday and enjoyed some birthday cake before flipping through his pictures and saying goodnight.  Each year we plan to celebrate the same way and move that much closer to being together as a family again. 


Sunday, August 5, 2012

New Windows!

Saturday was a fantastic day...or so I've heard...Turns out I came down with a bug and spent the day in bed while Jeremy and Avery hung out with our friends and neighbors and the amazing crew from Window World.  As you can see, the windows look amazing and we've already enjoyed cleaning them as a family! 

The afternoon was a hot one for sure, but the food and fun was great for all.  Hopefully our friends and neighbors were able to check out their good work and ask some questions while spending some time with Avery.  She of course, had a blast hanging out with everyone and is very excited about her new "Avery" shirt the ladies of Window World brought for her. 

We are so excited to have them in and to hopefully see a reduction in our next electric bill!  I can't believe how bright the kitchen and front room are now with the new windows.  Needless to say we are so happy and very grateful to have had the Crew of Window World at our house this weekend. 

As far as an update on Avery...we are finished with the latest round of antibiotics for her UTI, however we have moved on to constipation.  The drugs we have her on for bladder spasm control are terrible for making kids constipated.  So far we haven't been able to get a good enough routine down to keep her comfortable so we are of course back to the fight of not eating.  Her weight has dropped since we left St Jude 4 months ago from 31 lbs down to 26 lbs.  She is looking a bit thin, so we are diligently working to get her systems regulated and her terrible eating habits back to only sort of terrible.  So far the Colace, Gummy Fiber chews, Malox and pumpkin bread are not cutting it.  As a result, this 3 year old is not nearly as pleasant as she normally is.  Hoping this week we can get it figured out. 

Jeremy and Avery fly back to Memphis on August 19th for her next MRI.  We'll see what the results are and go from there.  Please pray for radiation non sense and no tumors or necrosis.


Monday, July 30, 2012

Window World

Just in time...

Jeremy and I recently called upon Window World here in Kansas City to help us replace our 1977 windows and hopefully save us a little money in energy costs.  They are coming this weekend to replace them and let me tell you -- after the $502 electric bill we just got -- it's just in the knick of time.

Window World is a huge supporter of St Jude and the reason we solicited them for replacing our windows.  In the last few years they have contributed over 2 million dollars to the children of St Jude and we are very honored to have them work on our house.  When they discovered that Avery was a patient at St Jude they decided they wanted to make the day of work and extra special one.  They have asked for volunteers from the company to work on Saturday to replace our windows and are bringing with a tent and all the fixings for a little BBQ.

So if you have some time on Saturday and are curious, stop by for a few minutes and have a hotdog, say hi to Avery and ask a question or 2 about windows...great opportunity to see how things are done in case you are contemplating new windows at all.  It's of course supposed to be 98 degrees outside on Saturday, so dress appropriately as we'll be outside!  The crew will be here in the morning, attempting to wrap up around 1pm so swing by for a few minutes in between 11:00 and 1:00!

And just in case Jeremy and I were hesitant on dumping our old windows...the electricity went out last night at 2 am -- gotta love that heat!


Thursday, July 26, 2012

We apologize for the delay in updates. The Internet wasn't working on Tuesday night for some reason. Scan results weren't exactly what we were hoping for but they could have been worse. There are 3 areas of concern that the Drs would like to watch more closely. As a result, they would like to rescan her in 4 weeks rather than 3 months. Beacause Avery has had prior radiation in her tumor bed, they are concerned with the possibility of tissue necrosis on top of new cells and tumors. We are in fairly new territory for all of them and the bottom line is that they just can't tell what every little blip may be on her scans. Full cranial radiation after proton radiation to the area is not common and we know it comes with more questions than answers. Our hope is that these small changes in her imaging are simple radiation weirdness and that we'll watch them just to be safe. In reality, we know that they could be so much more. Time is the only thing that will give those answers to again we wait and see. Obviously 4 weeks from now I won't be able to travel so Avery and Jeremy will fly down to Memphis for the scans and hopefully come back that same day. Results take a day to be read so we'll discuss them with our Drs the following day. The next 4 weeks are going to drag and be full of anxiety for us. I am not looking forward to the heavy feeling that comes with this type of dread. I honestly hope that none of you ever have to live through the torture that a cancer parent experiences on a constant basis. There are times in which I don't know how we survive it. On a high note, nothing like ending the trip in style...Jeremy went to the minute clinic this morning and discovered he has Strep Throat. Seriously!? Like an immuno compromised cancer kid and a 33 week preggers lady need that! Needless to say he has been banished to the basement and guest room. Thank God Nana is coming to take care of us this weekend. Jenn

Tuesday, July 24, 2012

Quick Update

Hi, everyone, Nikki again...Jenn lost Internet access tonight and hasn't been able to update as planned. We know many, many people have been waiting all day to hear some news and didn't want you all to worry. So, I'll keep this short and sweet and let Jenn provide the details when they get home. The scans results weren't as great as we'd all prayed they would be but it wasn't terrible news either. Basically, there are a few areas of concern that the doctors want to keep a close eye on. One is the remaining tumor and the others are too small to know what they even are at this point. They will do another MRI in a month to check for any changes. The great news was her spine and CSF were clear! They're all exhausted but thankful for your prayers and promise to give a full report in a couple days.

Sunday, July 22, 2012

4 Month Post Radiation Scan

Jeremy left for Memphis about an hour ago.  The dogs have been farmed out to various friends for the next few days.  Avery is taken a much needed nap after waking up at 5:30 am.  As I finish up the last few things before we get ready to head to the airport I find myself starting to panic...

Avery is scheduled for an MRI tomorrow morning, followed by her LP.  The afternoon will be spent in recovery and then an appointment with her Dentist and Eye Dr.  We'll see how well we've been brushing and if her vision has worsened.  Tuesday we have a long morning of Cognitive Neuro Testing, a visit with her PT Therapist to see how her braces and walker are holding up and then we meet with her Dr for the results of the MRI and LP.  We'll post on facebook about mid afternoon and on here in the evening.  Wednesday is a mix of therapy visits and an Endocrinology follow up.  They will be crucial moving forward as the radiation has huge damaging effects on her growth hormones and thyroid. 

Wednesday evening Avery and I will fly home pretty late, hopefully Jeremy will be home in time to pick us up from the airport.  We'll probably send him home around noon.  So far we haven't had any further complaints from Avery and her UTI - hoping we may have fixed things. 

Please pray that we seem some shrinkage in the remaining tumors...Hell at this point lets just pray that they are gone all together.  They say the radiation can continue "doing it's thing"  for up to 6 months, sometimes even up to 9 months and we are at 4 months, but lets just go with the gone option as I think she deserves it.  It's easy to forget that the world we live in is still not safe from those awful results.  Especially when we've adjusted our lives to some sort of (albeit abnormal) routine.  A birthday party yesterday and an MRI tomorrow.  Just doesn't seem fair...

Big Time Prayers Needed This Week!!


Sunday, July 15, 2012

UTI #5

Well never fails...a weekend comes...and so does a trip to the Urgent Care.  Avery was on an antibiotic to clear up the last UTI she had and we kept her on it after the first 10 days were done at a really low dose.  That finished out on Wednesday and on Friday evening she started to complain about her Pee Pee hurting again.  We met with her Urologist on July 5th and he put her on a bladder spasm drug.  She has been on  that med for the last week.  Obviously bladder spasms are not the issue.  So back on the antibiotic we went today.  Poor kid is so sick of this cycle and so are we.  The antibiotic makes her not want to eat and we have to keep her on Zolfran to get anything down her.  She's lost a few pounds in the last 2 months and while she isn't too skinny, she surely can't afford to lose any more, especially now that she is growing.

She was just getting her spunk and attitude back and we were hoping to see a jump in her ANC.  She is bruised from head to toe and now her poor immune system is fighting another infection.  I swear its a never ending circle.  On a high note, we took her to an Urgent Care this am, got a UA done in the first 15 mins, an antibiotic prescribed 5 mins later and we were out the door within 45 mins of our arrival.  Now we'll have to wait and see what grows out of the UA specifically and see what Urologist wants to do moving forward.

Gearing up for a hot week this week which is miserable for all of us, especially Avery.  She doesn't seem to do very well with the heat and humidity so we try to keep her in the air conditioning all day.  I can say my tootsies and big belly are not looking forward to it either.  I can't even imagine how Jeremy and his coworkers do it all day long.  Good luck staying cool this week!

We'll keep you posted on the PEE PEE Front when we know more.

Tuesday, July 10, 2012

Less than 2 weeks

Its hard to believe that another 3 months have almost come and gone but here we are approaching our 3rd scan post radiation. Avery and I will fly out next weekend and meet Jeremy in Memphis for 3 long days of sedations and tests. She will have the normal MRI and LP done, along with vision assessments, therapy appointments, a hearing test, endocrine work up, and check ins with all of our Drs. I don't think we are as nervous about this one as we have been in the past...but come October we'll be wrecks for sure. We've been attempting to enjoy the summer, but this 100 degree heat really takes a toll on pregnant women and kids with cancer. My weight just keeps inching up with the thermometer and I'm pretty sure Emmett is going to come out 10 lbs. Avery has been really enjoying her pool time this summer and we are so grateful she can actually go swimming! She continues to attend Aquatic Therapy each week, as well as going to full day rehabilitation services 2 days a week. The rest of the week she spends bossing around her buddy Chance and chasing the dogs. Jeremy threw himself a birthday party this past weekend and as a result we got to spend some time with a bunch of friends we haven't seen in a while. It was great to catch up and pretend, even just a little that our lives are getting back on track, albeit a new one. We are looking forward to clear/stable scans and good reports from St Jude in 2 weeks and will post as soon as we have them. For those of you on Facebook, check out the St Jude Research Hospital Page and you'll see Avery is pictured with a dog. Don't want to brag but she had more "likes" after 2 hours than Bill Clinton's photo...apparently bald kids and dogs pull more "awe..." than former presidents! She is also on the St Jude website on the gift shop page. Both are adorable of course! Thank you to everyone for your continued prayers and support...keep those prayers coming as we approach this next set of scans. Jenn

Sunday, June 17, 2012

Happy Father's Day

You'd be hard pressed to find a better daddy out there for Avery.  The things he has given up, sucked up, and dealt with to make sure she has whatever she needs and wants is enough to make you cry.  The strength it requires to carry Avery and I down this road is ginormous and he bears it with the best attitude and a smile on his face.  This year marks our 6 year anniversary and I am so proud that he is the man I married and the father of all 3 of our children.
Today we took Daddy to breakfast and then to Babies R Us to look for a new double stroller.  We forgot how complicated those things can be!  After a lot of strolls around the store and some test driving we finally found one that will let Avery sit or stand and have room for Emmett's infant seat.  After that we came across booster seats and figured out that Avery is big enough to move into a booster.  This is fantastic given the fact that she lays half reclined in her car seat and it proves rather messy for drinking her Starbucks in the morning.  The booster sits more upright and gives her a ton more leg room.  Who knew?!


Sunday, June 3, 2012

Visits to IA & MN

 Grandpa Randall and My New John Deer Hat
 All the kids at the Leaders Pond
Hanging out with my GJ

Me and Great Grandpa

Good Lord Nana makes me laugh!

I love the petting zoo

Well we've had a busy couple of weeks visiting people in Iowa and Minnesota!  It's been just shy of a year for visits to both places and it was good to get home.  We get anxious being far away from her Dr's and the hospital but we managed to survive unscathed.  Close call though as Avery began complaining of pain on Friday morning before me left for MN and sure enough she had ANOTHER UTI.  (or the same one that just won't go away).  Luckily we got her in to her pediatrician that morning first thing and they put her on an Antibiotic as a precaution in case. 

It was great to see all of our family and friends in both places, although the long drive to both places proved long and uncomfortable for my swelling feet and back.  We've decided no more travel until after Emmett arrives and our next trip to Memphis at the end of July may have to be via plane. 

Avery has started going to therapy all day - 2 days a week.  She has really been enjoying it and we've seen some definite strides in her independence.  She prefers to get herself dressed in the morning and is getting so much better with following directions.  Now if we could kick the UTI's I think the potty training would be moving forward a little faster.  For now, we've added the runs to the list of crap to deal with (thank you antibiotics) and are simply hoping to get rid of that within the next few days.  We have also noticed she appears to have some issues with reflux so we started her today on Baby Zantac.  We'll see if that helps a little with her eating.  We have managed to get her up to a whopping 30 lbs - something we never thought we'd see when we started this journey 30 months ago.

We went to see the St Jude Dream Home in Raymore today.  It is of course, beautiful.  Over 3000 square feet and begging us to move in....We bought our ticket thinking that with all the chances we have of anything we certainly seem to end up being that 1:1 maybe it will work for the St Jude Dream Home Kansas City good luck this time and we'll be the family drawn out of the hat to win a house!  The drawing is on June 24th and will be announced that day.  Tickets are $100 and the house is valued at $600,000.  Take a peek at the website for info on where it is located, how to buy a raffle ticket and to take a virtual tour.  It's open on the weekends as well for tours and is totally worth the drive.  Just don't get too attached -- as I mentioned earlier, we already plan on winning and there is a craft room with my name on it. 

St Jude Dream Home Kansas City

Jeremy and I are hanging in there.  Some days are better than others.  Sometimes I find myself being snapped back into reality after days of forgetting the world in which we live in.  This past week was not a great week for a lot of the kids we have met along our journey.  Updates are posted on Facebook and their Caring Bridge sites and the fear slams back into my heart instantly.  Something that will forever be part of our lives, I know - but so incredibly petrifying each time it creeps back up.  We are 2.5 months off treatment - the last possible treatment and no where close to being in remission.  Tumors are still present, and hopefully the radiation is still working.  The end of July is looming closer each day and with it will come the fear and scanxiety that only a Cancer Parent truly understands. 

We are looking forward to summer with Avery and all the new things she will get to see and do.  We hope to see lots of friends again and to spend some time in the sun.  Both Avery and I are a little too pale for the liking.  As her hair comes in we'll be able to venture outside a little more and spend some time in the pool.  Her aquatic therapy has really helped in getting her to relax more in the pool.  We are hoping to add Hippotherapy (horse riding therapy) as well this summer if we can get in to it.  Daddy is a little more excited about this one than I am, but we'll try it.  Hoping to see an improvement in her Ataxia as we continue with these day sessions at therapy, but radiation has really wiped out her energy levels.  A little normal is what we need - here's to hoping that its what we get. 


Sunday, May 13, 2012

Nikki and Thad Pealer Adoption Page

Many of you know my best friend Nikki from the benefits, the emails, the start of this blog and the never ending help that she has provided for us over the last 2 and a half years.   Very rarely have we been allowed the opportunity to even attempt to give back for all that she has done for us on this journey.  Today I am going to try, so I want to tell you all about her and her amazing little family.

Thad and Nikki were blessed with a beautiful baby boy shortly before Avery arrived.  Harper is now almost 4 years old and the Pealers have spent the last 2 years working to give Harper a sibling.  Unfortunately, due to complications surrounding Nikki's pregnancy with Harper they have been unable to get pregnant a 2nd time.  Undeterred, they have decided to change paths and are very excited about the next step - adoption.  Please check out the above link to find out all about their story and pass it on to all of those you think might know someone...

What we have all learned in the last few months is that adoptions are more commonly achieved because someone knows someone who knows a woman that is facing this decision.  So please pass on this site should you hear of someone.  You just never know what God has in store for all of us...and somewhere out there I know there is a Mom just waiting to meet my wonderful best friend and her beautiful little family.

Please don't hesitate to call/message me with questions...Nikki & Thad's contact information is on their website, as well as their full story.