Avery's Journey

Radiation

2012-01-26T19:55:00.000-06:00

After talking with our team today at Children's Mercy and St Jude we have decided to move forward with Radiation now. We have had great - better than expected results with this particular clinical trial and we'd hate to lose that by pushing forward with another 2 rounds of chemo only to find the disease has found its way around the chemo. Taking that risk into consideration we have decided now is the time. Hit it while its down - so to say.

This means that early Sunday morning we will once again pack our bags for that 9 hour drive to our home away from home. Her appts start on Sunday afternoon and are so far scheduled through Wednesday but our guess is that many more will be added for the rest of the week and we will find ourselves running like normal. Although it hasn't been confirmed, we are assuming we will start radiation on Monday the 6th. The plan is for 4 weeks of all over spinal/cranial radiation, followed by 2 weeks of boost radiation to the specific tumors and the original tumor bed. Once we had our appts with the radiation team in Memphis, we will update more specifically.

Once again we find ourselves split up from each other...but something we will gladly do if it gives us the results we are so desperate for. Avery is strong. She is a fighter. And we will give it our all to get rid of this damn mother effer of a disease.

Jenn

Happy 3rd Birthday Baby!

2012-01-23T19:30:00.000-06:00

Avery's Birthday Party was a hit! I think she was feeling a little under the weather so she spent a majority of the party in the Little Tykes Coupe with Grandpa's keys - but hey she had a good time. The rest of the kids seemed to have had a great time. She was overwhelmed by all the gifts so of course she went "running" with nana while I finished opening them up. Thank you to all of you for such wonderful gifts. She spent the rest of the weekend exploring them and has gotten very protective over them!

Scans were Stable

2012-01-20T22:48:00.001-06:00

It looks like we got the birthday present we were hoping for! Avery's scans showed no progression of tumor growth nor any new lesions. This is fantastic and a huge relief for the moment. We aren't exactly sure what that means for us but after we talk to the drs next week we'll have a better idea of what is next. We are at a point in this journey where the drs are guessing and the decisions are not easy to make. The pressure to choose correctly is unwavering, followed by the immediate anxiety that we chose right. It's not a ride I recommend to anyone. But in the same breath I thank god for the chance to choose again...

Avery's MRI went smoothly....her LP was a little tough. Unfortunately being NPO before an LP doesn't help with fluid in your spine. The dr had to stick her quite a few times before she got any spinal fluid to come out. As a result, she has a sore back now. She milked us for the rest of the afternoon and managed to finagle 2 cake pops and a bag of cool ranch Doritos out of us because of it. Her shunt reprogramming went great and we love the new NP from neuro surgery.

Tomorrow we celebrate my hero's birthday. It's been 3 years already....3 birthdays with this fight...but three we wouldn't trade for anything. If we can take only one thing away from this whole situation we'll take this: PERSPECTIVE. Everything looks just a little better when you get some perspective on it. Think yesterday sucked? It could have been way worse....and for someone else it was...I think about that every time my mind wanders to that place...and it goes there a lot. But tomorrow I'm going to adjust my perspective...because I get to spend the day celebrating my hero's special day.

Jenn

Update

2012-01-20T10:31:00.000-06:00

Avery's MRI is done. We are waiting for the Dr to finish up the LP. Once she wakes up we will get her shunt reprogrammed and go find some food. The plan is to meet with our team at 3 pm today for results. We'll post once we've had time to digest. Kepp em crossed...

Jenn

Scanxiety Week

2012-01-16T21:02:00.000-06:00

It's hard to believe that its been 2 months already but it has. Her MRI is scheduled for 7 am on Friday. We hope to have results by sometime in the afternoon. Again, results will be shared with our Neuro Oncology team at St Jude before any decisions are made so it will most likely be Tuesday before we post anything.

It's crazy but on Saturday Avery will be turning "twee". We have a big party planned at a bounce house place here in Shawnee and we plan to bounce the toddlers into oblivion...or at least into a really good nap for Saturday afternoon. Mickey Mouse is the theme for the party and it was a decision made entirely by her. I really thought she'd want a Rapunzel party or at least Strawberry Shortcake party but she opted for Mickey Mouse instead. It's hard to believe that it's been a year since we celebrated our Hero turning 2. She's come so far in the last 12 months...talking, standing better, communicating so well and trying so hard to be the terrible 2 yr old that we want her to be...

Turning 2 - Super Hero Party

This week, just shy of 3

We'll get some pictures out of the party this weekend. And we'll get word out of the scans as quickly as we can. Please pray for us this week as we once again are faced with these difficult decisions. Please pray that God leads us through this time and gives us courage and strength to find the right path to continue on in this journey. Please pray for all of our cancer family friends that are facing this same situation here in the next few weeks and are looking for the same positive outcome that we are with scans. Most importantly, kiss those kids twice tonight...no matter how crazy they drove you today.

Jenn

Happy New Year!

2012-01-01T19:55:00.000-06:00

It's hard to believe that we've finally left 2011 and are moving into 2012. For most, the new year offers hope for an improvement, a change, an adventure. For us it offers only the very real possibilty of a terrible year. It's hard not to see it that way, standing where we are. We are hopeful that we will continue to make good decisions in the new year and that they will yield the amazing results we are so desperately seeking. But we are realistic that this year could prove to be even worse than 2011. So for now, we step gingerly into the new year - not wanting to make too many waves for fear that someone might notice and we move forward with the unknown.

Thank you to you all that have supported us - emotionally, spiritually and financially. Each is so very important to the survival of this family and it is a debt we will never be able to pay back. For all your generousity in 2010, 2011 and for the yet to come....we thank you from the bottom of our butts....they are much bigger. : )

Jenn

Merry Christmas

2011-12-25T22:01:00.000-06:00

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

Due Date

2011-12-18T20:26:00.000-06:00

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

Next Step Started

2011-12-12T10:14:00.000-06:00

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

Heaven Earned an Amazing Angel this week...

2011-12-02T15:09:00.000-06:00

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

hair today...gone tomorrow...

2011-11-28T21:24:00.000-06:00

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

Thankful

2011-11-24T15:11:00.000-06:00

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

Weight loss before the holidays

2011-11-17T20:41:00.000-06:00

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

Round 2

2011-11-13T19:41:00.000-06:00

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

Disney World

2011-11-03T22:20:00.000-05:00

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

Disney World...here she comes!

2011-10-27T22:48:00.000-05:00

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

2 months

2011-10-17T21:50:00.000-05:00

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

New Chemo

2011-10-15T17:35:00.000-05:00

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

Tumors

2011-10-07T21:23:00.000-05:00

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

Day 1 St Jude Oct 2011

2011-10-03T20:31:00.000-05:00

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

Heading to Memphis

2011-10-01T21:00:00.000-05:00

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.

Count Down Continues....Scanxiety Ahead.

2011-09-20T21:16:00.000-05:00

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

Green Boogers

2011-09-14T19:42:00.000-05:00

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

Iowa vs Iowa State Game

2011-09-11T21:47:00.001-05:00

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...

Holy Hair!

2011-08-30T20:44:00.000-05:00

2011-08-24T17:50:00.000-05:00

We apologize for the lengthy delay in posts. The Christiansen family has had a lot to deal with these past 2 weeks. We went in last week and I was induced on Monday night. After a long 3 days, Jude Avery Christiansen was still born into this world - a beautiful, and amazing little boy. He passed during the delivery which was probably better for us anyway. He was a big boy -- 1 lb 2.5 oz and 10.5 inches long! We spent time with him and then had to say our goodbyes for now. Avery was not there and she is none the wiser, although we plan to make Jude a part of our lives moving forward.

A friend told me I was lucky we produce such strong kids...Jude hung around for 22 weeks to make sure we knew that he was strong enough to take care of Avery from Heaven. I really hope she is right. I guess if you've learned anything about this family in the last 20 months it's that we fight - full blown, from our head to our toes.

We also said goodbye to our nanny Taylor, who has been a tremendous help to us in the last 8 weeks while Sharon has been out. We wish her the best in all that she does in this big world. Starting Monday we will be shifting tactics once again and Avery will start going to a friends house during the week while we work. We'll be changing up her therapy routine a bit but she really is doing well. Her favorite word is still "no" and she was able to stand alone for almost 30 seconds the other day at PT. Not something we ever see, but they swear it happened. Next week I will return to work, hopefully in a better state of mind and a little less sore than now. Jeremy has been doing his best to keep me comfortable, stable, and calm - all the while wrangling a 2 year old that throws her hand in your face and tells you "no". Overall, I think he's hanging in there.

There have been a lot of tears this last week...uncontrolled and random at times, but my little girl always knows how to wipe my face and give me a kiss to make it better. If she only knew how effective that is for me...

Jenn

2011-08-12T09:51:00.000-05:00

It is with much sadness that we write this entry today. Avery is still doing well and we are looming closer to the next set of ALL CLEAR scans - not to worry....today we are sad for another reason.

We had our 2nd sonogram last Friday and some issues came up on the pictures. We were referred to a Perinatologist for further tests and on Tuesday of this week we went in. They performed a higher level sonogram with a more experienced technician and they were able to confirm that Baby C has a double cleft lip, which most likely means a cleft palate as well. Devastating as it was hear that, we were in for a much worse diagnosis. The Dr came in and indicated that not only did they see the cleft issues, but she was also seeing an enlarged gall bladder, kidneys and issues with the heart. She also noted an additional finger on one of the hands and was unable to tell if the other hand had any concerns. They did an amniocentisis to pull fluid from the uterus and sent it off for chromosome testing. We knew at this point this wasn't a good thing and asked for the truth from the Dr. She told us that with that many obvious issues on the sonogram we were most likely looking at a chromosome syndrome that was not survivable.

Yesterday the amniocentisis confirmed the Dr's suspicions and the baby was diagnosed with Patau's Syndrome. The condition is not survivable. It was also discovered that the baby is actually a Boy.

Another one of those "worst things for a parent to hear/deal with" and believe us we are pros at this now. It doesn't get any easier. I am a day shy of 22 weeks and that in itself provides us ridiculous obstacles. Our options were to wait until the baby passes and then have him removed, as most die prior to birth or within days after. Or we could choose to terminate the pregnancy. Our preference was to terminate as soon as possible to avoid further complications or to grow more attached. However, in the state of KS there are laws that regulate when and how things like this could be done and we have missed the cutoff - medical reason or not. Rather than go out of state for the procedure we have decided to have our Dr induce labor and I will deliver the baby in the next few days. We will go through labor and push like normal, but because he is still so young he will not survive once out of the womb.

This is absolutely devastating for us right now. We are struggling to keep it together each day and we appreciate everyone giving us some space and time to absorb this ugly mess that we are once again finding ourselves in. I am looking hard for the message or the reason or the purpose behind this and am coming up empty handed...It feels as if moving forward just isn't in the cards for this family and we are trying hard to not let that feeling get the best of us. We'll get through it I know, but I am reminded with each kick that he is still there with me and that is a haunting feeling I don't think I will ever forget.

Jenn

It's another Girl for the Christiansen's

2011-08-08T21:22:00.000-05:00

It's official...another girl for the Christiansen family! While daddy is nervous about the growing number of females that surround him in the house - he is also very excited for another little girl to wrap him around her finger. I'm excited because all those cute clothes we had that many people never saw while we were on our travels will now get a chance to be seen again! Avery is just plain excited to have a sibling coming her way. We've started reading the "I'm a Big Sister" book and she is anxious to help mommy with the baby like the girl in the book does.

HEAD FOR THE CURE WALK

2011-07-29T15:13:00.000-05:00

Last year we came home from St Jude/Florida right before this event took place. As a result, we didn't have the time (or energy) to organize a team for the walk. This year however, we are all about it! Team Avery will be represented at this fantastic cause made to bring awareness and funding to find a cure for Brain Cancer. This organization has been in business for 9 years and last year here in KC had a huge turnout of roughly 4500 people!

We'd like to add our support by participating in the walk and showing our TEAM AVERY spirit. If you'd like to join us, you can register as a walker online and then choose to join the Team Avery team on the 2nd page of the registration. If you can't be with us physically, we've set a small goal for our fundraising and you can show your support that way! For us this is really about awareness...funding today for the TaTas and Prostate Cancer are amazing...we'd like to see the same kind of research efforts and awareness be brought to not only Childrens Cancer, but more specifically the Brain Cancer that has made our lives a rollercoaster these last 19 months.

The walk is on Sunday, August 28th, 2011 at 8 am in Corporate Woods - Overland Park. If you haven't anything else to do, throw on those Team Avery T-shirts and join us for the morning...once again walking behind our little fighter as she leads the way...ok it might be in a wagon for a majority of the time...

http://public.eventunited.com/HFTC/hftckc/TeamFundraising.aspx?tid=8969

Questions? Give me a shout! avery.christiansen@gmail.com

Jenn & Jeremy

More Hotness in KC

2011-07-28T21:08:00.000-05:00

The heat wave continues and we attempt to stay cool by being indoors....it's even too hot to go swimming! But Avery has found lots of entertainment inside with Miss Taylor. Today she enjoyed some fun at Monkey Business and last Friday she spent some time with her buddy Cooper at the train restaurant.

Uncle Rob is coming to see us this weekend and we'll find something fun to keep us busy. Avery continues to improve each week in both her speech and her physical strength. Yesterday she stood up by herself, of course while I wasn't paying attention. Jeremy witnessed it and the moment he called for me she sat down again. We are so excited to see her gaining some of that control. We are a long way from walking for sure, but if we could stand up on our own that would be fantastic!

Other than that, we have been pretty boring...just the way we like it.

Jenn

Family Weekend

2011-07-19T21:45:00.000-05:00

Thanks to his buddies, this past weekend Jeremy was able to participate in the Richard Petty Racing Experience...which basically puts your typical dad behind the wheel of a very expensive race car and allows him to go 120 mph while his wife frantically takes pictures and prays he doesn't wreck. Luckily, Daddy had his brave little girl cheering him on and the car and mommy both survived the experience unscathed.

The rest of the weekend was spent a little more low key...we did a little sewing, played with our dolls and tried to find mom some chubby clothes for the summer months...none of which were needed the first go round when month 4 was merely a tightening waistband. We have moved way past that point in this pregnancy and as a result were in need of the chubby shorts and capris to survive the summer. By the way - uh over this 99 degrees thing entirely...I don't seem to have much pull in the "make my life easier" dept, so if any of you do....a 10-15 degree drop in temp would be much appreciated.

This coming weekend we are excited to see some more visitors and friends and even meet a new buddy. Spencer showed up in May and we've been anxiously awaiting his arrival. Avery loves babies and I am a little concerned that she may be in the fight for who gets to hold him next. And honestly who wins when they are competing with the cuteness of a short-haired, blue glasses beauty such as this? Really ladies...I apologize in advance that she may be hogging the baby this weekend.

I am happy to report that Avery has officially said the word "momma". Don't get excited people. She repeats it over and over and over for no rhyme or reason and doesn't associate it with me at all. "DA" is still produced when asked who I am. However, the plus side is that we now know she can say it! Now just making her understand that she only says it for me.....easier said than done.

Please keep some friends in your prayers this week...Natalie was just diagnosed with the same brain tumor as Avery. She is at the very beginning of her battle and doing well, but needs all the prayers we can muster....Also keep Mary in your thoughts as she goes in for surgery on Monday. Mary works with me and was just recently diagnosed with Breast Cancer. Joining this cancer world is a tough transition from everyday life and we hope that others can have the same support system that we've been lucky enough to have. On on high note-- our buddy Quentin has had great results on his most recent MRI and they are reportedly moving on to the next stages of treatment with no concerns. Its been a long, hard road for Q and his parents - Stem Cell Rescue is an amazingly tough treatment to come through. He is a true fighter in every sense of the word and we are so proud of him!

Jenn

ALL CLEAR!

2011-07-11T12:35:00.000-05:00

Avery's results came back earlier than we expected. She received an ALL CLEAR in her spinal fluid and her MRI -- this is absolutely fantastic -- way to go PRAYER TEAM!!

Her next scans will be in October at St Jude -- for the next 3 months we plan to live in blissful naivete and ignore scanxiety until the end of September. Forever grateful for His love....

Jenn

2011-07-10T19:39:00.000-05:00

Jeremy and Avery made it safely to NYC today. She managed to sleep for a bit on the plane which helped daddy in the 3 hr flight. They are on their way to the Ronald McDonald house now and then to get a slice of NY City pizza. Tomorrow's appointments start at 10 am and should be pretty short and simple. Labs, MRI, LP and a visit with Dr Kramer. In a cab by 5pm and home in KC by 9:30.

MRI results will most likely come back as preliminary tomorrow afternoon and the LP will probably come back the next day. As Avery hasn't had any recurrent tumor, we aren't as concerned about the MRI. The LP is what makes us nervous. I will post as soon as we have results. We appreciate all the prayers tonight!

Jenn

2011-07-06T21:02:00.000-05:00

An Independence Day....independent of hospitals

2011-07-06T20:48:00.000-05:00

Jeremy, Avery and I have spent almost every major holiday in the hospital in the past 18 months...so we were bound and determined to not spend the 4th of July in one this year. We managed to succeed, although Sloan Kettering threatened that possibility for a while. Thanks to the 3 day weekend, we managed to make it up to MN and spent some much needed time visiting Team Avery North. We didn't get to see all those that we had hoped to see, but it was great to see the ones we did.

Avery spent lots of time in Nana's pool and she absolutely adores the water! Poor Jersey even had a dip or two thanks to Avery. The rest of the time she spent chasing the other puppies while they danced around her and barked. Annoying to mom and Nana, but Avery loved every minute of it.

It was a short trip, but long over due and it was nice to spend a few days out of the heat and humidity that seem to have settled on the Kansas City area. Monday's drive home left us just enough time to sneak out to Corporate Woods for a fireworks display. Avery oohed and aaahhed with the rest of us and pointed at every firework. Needless to say it was a hit for her.

The C Diff seems to be on its way out....lucky for us the new Nanny Taylor is a nurse and knows all too well the fun that can be had with the C Diff bacteria. We also experienced our first "Time Out" this past week. Avery is generally a very good little girl and so far has not required the threat of time out. However, last Wednesday she was just a bear. So we put her in time out for a minute....she did not like that one bit. Stopped her crying though and she was a perfect angel the rest of the evening. Hoping this doesn't become a regular occurrence, but lets face it - she's a 2 1/2 year old....

Avery is working tremendously hard at her therapy sessions each week. She is really moving quickly in the speech area and the therapist is really pleased with her progress in such a short time. She has become much more vocal over the last 3 weeks which is crazy to us. NO -- she has not yet said MOMMY....but it's coming I swear. We are now looking to add Aquatic Therapy to her routine as the PT therapist believes this would allow her to let go of some of the fears she has developed of falling due to not walking. Apparently the farther up from the ground you get, the more fearful you become.

I know it's hard to believe, but it's that time again....Scanxiety has arrived....
Sunday afternoon Jeremy and Avery leave for NYC for an MRI/LP and visit with Dr Kramer. As the expense of flying and out of network procedures has started to add up, I will not be joining them. Monday are the tests and Monday night they will fly back to Kansas City. We most likely will not get results until Tuesday anyway, so I am not as nervous about not being there. Still, the fear and anxiety that accompany the looming date with the MRI machine are very real. Say an extra prayer for us this week as approach this date. And maybe throw an extra one in there for me, as I can no longer be held accountable for my hormonal responses to daily tasks, let alone emotional stressors like this one.

On that note, we find out on Friday whether Avery will be hosting a Baby Brother or Sister for Christmas this year. Jeremy will also be getting older on Saturday. Feel free to harass him about this as his plans include getting up early to work, attending my company picnic, a 3 year old's birthday party and installing a new dishwasher. Birthdays really aren't what they used to be once you hit 30 and have kids...

Earrings & Hair!

2011-06-23T21:08:00.000-05:00

Reality

2011-06-23T20:59:00.000-05:00

Just when we start to get comfortable in our new "normal" life, we are thrown back into the reality of the cancer world. Just because you leave hospitals, you stop chemo, or you finish a treatment - it never means you are fully done with this nasty business of cancer. We found out yesterday that another baby girl earned her angel wings from our SJCY07 Protocol family. While we had never met Sophia and her parents in person, we were well aware of the path they were on and the battle they were fighting. The feeling of safety that being home has provided, came crashing down around me as I read those fateful words.

Life will never be normal for us again - we know that. We are thankful every waking moment that our little girl wakes up with a smile on her face and poopy diaper. That she loves to get herself dressed in weird outfits and won't wear her hearing aides... that she won't eat anything but chips, sweets and mac & cheese...that she works so damn hard to walk, to talk, to move and that if I stick out my lip and pretend to cry, she will give me the best hug in the world so I feel better. These are the things that may challenge other parents, but to a cancer family, they are the closest thing to normal - and all they want. Just like that, things could be different. Losing one of our kids, whether we know them personally or not, hits very hard and very close to home. Sending us right back into the reality in which we never want to be in.

So as you pray for Avery tonight, please also keep Sophia's family in your prayers.

Thank you...

Jenn

Crisis Solved - Temporary Nanny Found

2011-06-21T20:56:00.000-05:00

Thanks to a very user friendly website, Sitter City, I was able to locate possible nannies from the Shawnee area to interview in a rather short amount of time. We quickly interviewed the possibilities and offered to a recently graduated nursing student who spent some of her schooling at Children's Mercy. Great fit for us, so we are extremely happy. Taylor will be starting next week with Team Avery!

Nana came down on Sunday to save us until we found a temporary replacement so we've now added training to her lists of todo's as tomorrow she will take Taylor to rehab and show her the ropes. We have some concerns about Avery's eyes-- not her vision but her eyes. We've noticed she isn't looking directly at objects sometimes and it started after the surgery in April. We are hoping an evaluation will diagnose an issue with control or movement that can be easily remedied with some simple training, but we'll see.

Avery is doing great with therapy already. Lots of energy and a never ending desire to do it. She started speech therapy as well and we are already seeing a difference in her attempts to talk. MOM is not being said yet but it doesn't appear to be so far away now. We've reintroduced the hearing aids and she is slowly tolerating them more and more each day. An OT evaluation was done today and they found her to be right on track with her skills for a 2-21/2 year old. This means she's smart as can be but can't walk or talk...makes for tough dealings when someone wants something. Soon enough the speech thing will be here though and we'll just be left with the strength and walking to work on. She is such a strong girl - its inspiring.

Thanks to everyone for the great ideas and suggestions in finding a temporary solution for Sharon being out. We so appreciate it! Avery and Sharon miss each other terribly, but in a few short weeks I am sure they'll be back to being best buds again...Please keep Sharon in your prayers as we really need her to heal fully and be ready to rumble with a chatty cathy, mover and shaker in a few months!

Jenn

SUNDAY JUNE 19th - FUNDRAISER AT NOODLES OAK PARK MALL

2011-06-17T16:55:00.000-05:00

Noodles & Co have graciously set up a day to raise money for Avery!

This Sunday they will be donating 25% of proceeds to the Avery Christiansen Fund for all the meals they sell that day. I know it's a big day for most...Happy Father's Day to you Dads...but if you have time to stop by and grab a bite to eat please do!

                 Noodles & Co is on the north side of Oak Park Mall
                 95th street & Quivira in Overland Park, KS
                 Open 10:30 am - 9 pm

The Christiansen's plan to head over after Church on Sunday for some lunch in case any of you would like to join us!

Jenn & Jeremy

Bling Bling & Blue Glasses

2011-06-15T19:00:00.000-05:00

Week 2 of Being Home

2011-06-15T18:56:00.000-05:00

Week 2 of being home was not as uneventful as we were hoping it would be. Unfortunately on Monday Sharon, the friend that spends her days with Avery while Jeremy and I work, slipped and fell on the stairs. This caused a very ugly break in her ankle that required surgery, lots of pins, and a really big cast. Needless to say, Avery's best buddy will not be around for the next few weeks while she recoups. Avery was extremely upset by this, but Sharon will be back so she'll get over it. Just another bump in the road I guess. The good news is that Sharon had some options in the fall and chose (thank God) to protect Avery's head while sacrificing her ankle. Definitely a rotten deal either way but it so could have been way worse. We feel awful that poor Sharon will be spending the summer attempting to itch through a cast!

In the mean time, we are conducting interviews for a temporary nanny to spend the next few weeks with Avery. She is working really hard on her PT and Speech and we are hoping to really start hearing her talk here pretty soon. She has "yeah" down pretty well now, but we are still waiting on "mom". It looks like we may be adding the OT sessions at some point as well so the kid will have a very tiring week of therapy...but a little hard work now means a lot more playing later....right?

Our goal this summer is to make it to Iowa and Minnesota for a visit. Both are places she hasn't seen in quite some time and we are hoping that we may get the chance to see many of you while we are there. The MN trip is planned for the 4th of July weekend. If you happen to be around that weekend - we'll be at Mom's in Burnsville hanging by the pool. Come on over and see us! The Iowa trip is not definite yet, but looking like August. We just heard today that they shut down interstate 29 due to the flooding so driving up now would be a bit of a struggle. Hopefully that will go down in the next few weeks and leave us wide open for a small town reunion in Underwood.

Avery is more than excited to be home. Her own bed, her own toys, her own dog -- all things she really missed. It seems like she has progressed so much in the last 2 weeks, when in NYC she seemed to stand still. I really hope that she continues to grow and discover the world around her now that she has a chance to be a kid again. We even went and had her ears pierced this weekend! She loves her "big girl" earrings and didn't cry when they got her. Maybe this will help us avoid the "oh what a handsome little man" comments we seem to elicit from strangers all the time. We return in mid July for a check up at Sloan Kettering. A short visit, but scary none the less. A short month from now, we'll be working on our scanxiety and asking you all for big prayers...something you do for us daily I'm sure. All of our St Jude friends appear to be doing excellent with their progress as well and that just adds to the relief we feel at this point.

We continue to live one day at time -- for the moment, taking it all in. So we appreciate the appeasement when we ask to do something now rather than in a few weeks...which reminds me, we need to schedule a date night soon. For now, we'll live in today and worry about tomorrow later -- so we don't have a nanny....it will all work out, if only you believe.

Jenn

Missing A Camera???

2011-06-05T21:22:00.002-05:00

I have a Kodak Camera that was left at the walk on Saturday. If it belongs to you -- give me a shout!

avery.christiansen@gmail.com

Avery's Walk

2011-06-05T20:56:00.000-05:00

Avery's Walk was absolutely amazing! She had the best day, as did we, spending time with all of you that could make it. I can't imagine a more perfect way to to celebrate the end of treatment. It was a bit warm, we gave way too many sweaty hugs out, and we exercised way more than I ever should - but it was totally worth it to see all of you. Thank you so much to everyone for being there and making her feel every bit as special as she is.

A very special thank you to Jacinda and Therese for organizing the festivities for the day and for all the volunteers that helped with set up, clean up and everything in between! I didn't take a lot of pictures so I will post just one now, but once I have the others back from the photographer (Jeremy Arnold) I will put more up! Below is Avery and her buddy Easton -- both Brain Tumor fighters -- both heroes.

Last Day of Treatment

2011-06-01T19:21:00.000-05:00

Today was Avery's last treatment here at Sloan Kettering. It was a long day, but to our surprise, was filled with some much needed entertainment. Today was the PROM at Sloan Kettering and all patients, siblings, parents and Nana's were allowed to shop in the playroom for a ball gown, purse, hair piece, make up, nailpolish and corsages. You name it - they had it. Avery usually loves the girly stuff but the room must have been a little overwhelming as she was not happy about putting on her dress or looking at the jewelry. We finally man-handled her into the pink and black itchy garment and scooped up some accessories before heading out to the peace and quiet of the CT scan waiting room. She managed to calm down about the dress eventually and even started to take an interest in the headband, purse and jewlery we had picked out for her. After getting her pre meds we went down to the cafeteria where they had set up a "school gymnasium" prom, complete with a buffett line, balloon arch, and DJ. The kids were absolutely thrilled and although Avery was again overwhelmed to start, she eventually decided it wasn't so bad and took to walking around the dance floor trying to jump up and down like the other kids. Sadly, she did not take home the toddler tiara (this may have been rigged by the staff who thought her mommy was crazy) but she looked like an absolute princess to us.

After the Prom we went back up stairs to our bed to hang out for a while. We have officially moved into the obssessive DVD phase, in which she spends hours watching the same movie over and over. For the last 2 weeks she has been glued to The Little Mermaid. Apparently she went into complete meltdown last week when Daddy suggested Toy Story. I have had better luck this week and have actually seen 3-4 other movies, however I have also seen the Little Mermaid at least 13 times since Sunday. Whatever makes her happy - right?

Tomorrow is a big day of packing up and deciding what to leave behind. Our flight leaves around 11 am on Thursday and we hope to be home by mid afternoon. We can't wait! Then Saturday morning, bright and early we are so excited to see many of you out at the park. She has been working really hard on her walking these past few weeks and will be showing off her skills. We sure hope to see everyone there for a fantastic celebration of the absolutely amazing things this brave little girl has done in the last 18 months. She is so lucky to have the support system that she has and we hope she gets the chance to thank you all in person. Her hugs make you melt and her toothless smile will make it worth the drive. See you all Saturday morning ...

Going to Kansas City....Kansas City here I come...they got some crazy little women there and we are going bring one back home!

Jenn

A week and a half left

2011-05-25T20:10:00.000-05:00

Sorry it's been a week since I updated...Last week seemed to go by a little quicker as we had Aunt Lindsay visiting and helping us out. Avery's treatment went well, although she was not very happy about having to sit behind a metal screen with Lindsay and talk to me. Once the injection is done, it is no longer safe for me to be close to her so a metal wall was brought into the room to divide us. All in all, we tried to keep contact to a minimum until Friday which meant a lot of seeing but not doing for me. Tough on both Avery and I, especially when she was tired and crabby. Lindsay was a trooper though and managed to distract her most of the time.

Jeremy is with her this week and it has been a tough week for him. I left on Sunday evening and he and Avery have been alone, other than an afternoon visit with Scott yesterday. I think daddy is running out of things to do in that hotel room. Today he took her to the Gray's Pappaya place on the west side of the park. This is the famous hot dog joint that you see in a lot of movies. She of course was not interested in the hot dog at all, but the banana smoothie was a hit. Tonight I'm sure dad has her watching the American Idol finale.

I leave again to go back to NYC on Saturday afternoon. Jeremy will return to KC on Sunday and then Nana arrives on Monday night to help us pack up and make it through the last week. Treatment will be on Wednesday instead next week due to the holidays -- cause of course hospitals are closed on holidays too....Seriously? It's almost as if they think bad things only happen to people M-F, 8-5. That means we can return home on Friday afternoon. It will be a long week I'm sure for the 2 of us as we pack up and await that flight.

We are very anxious to come home, but at the same time nervous about what that means. This is it. The plan is at an end. Now its a game of wait and see. We've never been to this point - we relapsed before we made it this far last fall. Now the scariness of what could be looms very close and very real in front of our minds. If we aren't working to make her better we feel like we aren't doing anything and that scares the crap out of us. Telling ourselves that its in the best hands possible, God's, makes me feel better for a few minutes and then makes me want to cry the next. As a matter of fact I am bawling right now and I don't think I can keep writing.... so I'm not going to.

Everyone has been incredible these last 7 weeks as we struggled to make it through this stage. We appreciate all of you so much whether we have gotten the chance to say it or not. I hope you all know that. Why this time was so much harder for us than the 6 months in Memphis and Jacksonville last year, we aren't sure, but thank you to the ones that brought food, made us dinner, took care of the lawn, took care of the dogs, kept us occupied when home, sent care packages, and prayed for us through it all.

We pray that everyone is safe and sound tonight - and that family and friends have all been accounted for here in the midwest. It's been a crazy couple of days. Another one of those times when you just got to kiss those kids and tell them you love them...

Jenn

Newest Title For Avery Anne

2011-05-15T17:23:00.000-05:00

Avery has been described as a lot of things in her short 2 years. Most of them are things you and I are envious of....Rockstar, Amazing, Angel, Strong, Determined, Brave, Hero....but now she gets to add another very important one to the list. This is one she didn't have to do much for, but is very proud of nonetheless.

We are expecting a new baby in the the Christiansen family at the end of the year. This time we are shooting for south of Christmas, by about a week. Another Christmas Baby! I know we are asking for 2 miracles in a year, but I'm hoping we've been good enough the last year to deserve them both! Avery is well aware of where the baby is and when asked will promptly lift up my shirt and point to my belly. It's adorable, however can catch my chubby butt off gaurd at times. We are definitely in the tired and queasy phase of things but are hoping to be done with that by the walk on June 4th.

Speaking of the walk, I have a plan. I had a dream a few weeks back that we took a picture of all that came out for the walk standing behind Avery. Avery will be out front, blue glasses and a smile, in all her glory with her bling bling gold walker. This makes me giggle to no end and I sure hope that everyone that has been following our journey and supporting us will be there in that picture. What a fantastic thing to be able to give her for the rest of her life - a picture of HER TEAM. The ones that stood behind her the entire way.

Please join us on the 4th if you can - you can walk or you can come out for the hotdogs - either way, being there means the world to us. The walk begins at 8:30 am and goes through ealry afternoon. The park will be filled with all kinds of activities that day, so there will be plenty to do. Bring the kids, bring the neighbors, bring the dogs....Miss Jersey Anne will be in attendance sporting her t shirt. They will also have Team Avery bracelets for sale - something we never had thought to do before. More information can be found at the website at http://www.walkforavery.com/. We are really excited for this day - it marks a long year and a half completion of treatment, atleast for the time being and we'd like nothing more than to celebrate it with Team Avery. Hope to see you all there!

Questions about the walk? Contact Jacinda at jacindakloss.rlt@gmail.com

Thank you all for your continued support....we've almost made it to the break!

Jenn

Good Day Of Treatment!

2011-05-11T09:25:00.000-05:00

Avery did fantastic with her treatment on Tuesday! It was a long day but she did not get sick once. We can only hope that the rest go the same. As many problems that we have had I really think the Doctors here do want Avery to get the best care. They explained how the day was going to go and executed it nicely. I think Jenn has trained them well! Between St. Jude, KC, and Sloan we have some of the top Doctors in the country taking care of Avery and we have high hopes for her cure.
She continues to amaze me everyday with her strength. As soon as I think she has had enough she bounces back even stronger. I can't wait for her to show off some of that strength at the walk. We want to thank everyone for the work putting together the walk, the cards, packages, and most of all your prayers. Hope to see you on June 4th!

Jeremy

Week 1 of Treatment

2011-05-07T10:35:00.000-05:00

Week one of treatment was a tough one. The big day of treatment was on Tuesday and no matter how many pre meds were given, Avery was still sick. After they finally did the injection at 2 pm that afternoon, she became rather uncomfortable and sleepy. She then got sick prior to the scan, which of course scared off Anesthesia - resulting in a no go for the scan. I attempted to have them do the scan with merely her sleeping, but as we put her down on the table, she proceeded to vomit. Keep in mind she was not allowed to eat prior to this, so the only thing coming up was stomach acid. Poor thing was miserable. They told us that the first dose, although smaller, is usually the worst for them and they do much better with the consecutive doses. Let's hope that is the case cause this was a rough one for mommy to witness as well. Thankfully we had some company during the day so we weren't entirely alone.

The rest of the week was more of the same -- NPO, crappy scheduling, nothing on time, and a 2 year that was starving. Apparently adults forget how hard it is to entertain a 2 year old in a plain adult waiting room, who hasn't eaten all day. Needless to say - my patience ran out and some choice words were used to indicate my frustrations. Finally Friday came and we had a full day of nothing. Which is exactly how we spent it. We had some lunch and took a walk and then had dinner with Laura. Alex and Angie left for NJ and we watched a little tv together before going to bed.

Today we are anxiously waiting for Daddy to arrive! He should be here by 7pm tonight and I have a feeling the day is just going to drag. The excitement of NYC has worn off and been replaced with a longing to be home. This next week would have been our last week had we stayed on the original schedule. Instead, we are beginning week 2 of 5 weeks. Jeremy and Avery should have a fun week - no scans and no NPO except for Tuesday. And Uncle Glen is coming out to spend a few days and take her to a Yankees game! Funny enough, the Yankees are playing the Royals this week. Not sure what else they plan to do, but I'm sure it will involve food and fun for them all.

Avery has been on a roll in terms of moving this week. Lots of walking in her walker and she even got herself undressed and redressed (with very little help) today. Slowly but surely it is all coming together. We can't wait to get her back to KC and back in rehab so we can work more on the walking and talking. No new words to report yet, but any day I'm sure she is just going to look at me and a whole sentence will come out. Until then we will stick to Daddy, Ball and Jersey.

Jenn

A week away

2011-05-01T11:19:00.000-05:00

This last week was pretty rough on us as a family. Being away from each other was hard, but we managed. When I finally got to the house yesterday I found them on the patio and Avery wasn't facing me. When I got down in front of her she got the most amazingly beautiful smile on her face and I just crumbled. In a week, she has actually statrted to get hair. I could feel it coming in last week, but you couldn't see it. Now it's so obvious - and blonde as can be!

She had a great week with Daddy and Grandma, even though they had to sedate her 3 times. They went to Build a Bear and Ground Zero and spent a lot of time at the park. The MRI on Friday came back clear - which thrills us to no end. Keep in mind Avery hasn't had any chemo in almost 2 months. She was off of the high dose chemo and radiation for 3 months when she relapsed. Now they didn't do an LP last week, so we don't know whether or not cells are rebuilding in her fluid, but at this point she doesn't have any Tumor growth and that is excellent. We start the new treatment this week. She will receive a dose of the IO 3F8 on Tuesday morning and then have a scan 4 hours later, 24 hours later, and 48 hours later. While we have appts almost each day at the hospital, we are hoping to have some time to explore the city with our friend Alex and Aunt Angie. We promised to take them to the Ferris Wheel inside Toys R Us in Times Square. I am excited that she will have someone to play with this week. She desperately craves kid interaction.

Jeremy has a tough week ahead of him at home and we will be thinking of him constantly. He has a few chores to do to in the yard - so he should keep busy! There is a bird's nest in my wreath that hangs outside the front door and when I got home last week there was 3 blue eggs in it. By Thursday, they had hatched and are now teeny tiny baby birds. The year Avery was born, a robin built a nest in the corner of her window and we watched them all spring until they left the nest. Apparently we are good bird people - trustwhorthy. Or we are never home - so that helps too.

Well I see the eyelashes drooping....that's right -- I said eyelashes. They are about halfway grown out now. Still waiting on the eyebrows, but they will be blonde anyway. So I better get the nap underway. I hope everyone has had a chance to check out the walk information. We are so very excited for June 4th - it will be a much needed day of celebration. We have been going and going and going since Dec 29th 2009 - and this will mark the end of treatment - at least for now. We are so anxious to finally hit that mark and praying so hard that it is the end of treatment for her. It's been a long road for this 2 year old and she deserves a little break. I had a dream the other night that we took a picture of the entire crowd at the walk, surrounding Avery. Right in front with her blue glasses and bling bling gold walker - looking so proud. One day when she finds out that all those people came to see her, well I just can't wait to see her face. I hope everyone can make it. It should be a beautiful day for the Christiansen family.

Jenn

Happy Easter!

2011-04-24T15:16:00.000-05:00

We had a fantastic time finding eggs this morning in the room. It's amazing how many times you can take them out of the basket she is carrying and rehide them. She loved this so much she actually wanted to hide them for Daddy herself. All in all a very successful Easter morning, mostly thanks to Nana.

Yesterday we had a big day out and went to the American Girl Store where Itty Bitty got a new swimsuit and Avery got the matching one. This place was packed and filled with mom's and daughters, and bag-carrying dads who were thrilled to be there. Jeremy was very accomadating and took part in the tour of the 3 level store. Afterwards we walked down to 34th street and found Macy's. This place is even BIGGER and CRAZIER -- with a million people in it and a Starbucks on every level. We were floored by the amount of items they had in this place! We were exhausted after this and had to go back to Ronald McDonald for a nap!

We said goodbye to Nana this afternoon....very sad for both of us. And in an hour we'll repeat the process when I leave. I am not looking forward to this and not sure how well it's going to be handled on both ends. But we'll make it through it - always do. In the mean time, I need to get back to snuggling and playing with my girl. I can't promise you'll see any updates this week from NYC -- Jeremy isn't exactly into the Blog thing...but we'll see. I will try my best to update from home. Avery will have the flow study repeated this week -- most likely on Tuesday and Wednesday but the rest of the week she will get to explore more of the big apple with Grandma Lippold and Daddy. Yay!

Jenn

Surgery a Success

2011-04-22T12:22:00.000-05:00

Surgery last night started at 6pm. We actually got to take her into the OR ourselves and put her on the table. It was rather creepy seeing them prepare to cut open her head, but at the same time gave us some comfort of knowing the unknown. We sat with her until the Neurosurgeons arrived and then went out to wait. They gave her silly gas which of course made her loopy - very comical in the situation. It was good to see that as she was upset by the gowned up nurses and mom and dad prior to getting the good stuff. I secretly hoped that some of the gas would escape out and make me a little loopy too - definitely would have made the wait less stressful. The Dr's finally finished about 8 pm and came out to tell us it was a difficult surgery but it was a success. The good news is no one tattled on me this time for having water in the waiting room. Apparently this hospital is a little more advanced in terms of rules than others.

Daddy spent the night at the hospital with her as I am at my breaking point. The PICU is ridiculously loud and I haven't slept well in a week. I thought it only fair to allow dad to experience the same thing - if only for a night. I didn't feel so bad when he told me at 1:30 am she woke up starving and he argued with the dr's to let her eat. Apparently they had her NPO again as she needs an MRI today. Course they couldn't tell him when the MRI would be. At this point we still don't know. Organization and communication are severly lacking in this hospital.

Her last dose of post surgery antibiotic is scheduled for 7pm, so the hope is to be out of here by 8:30pm or so. Just in time to go back to the Ronald McDonald house and pop in the newest Harry Potter DVD and make some popcorn, her favorite. Tomorrow we plan on taking her to Macy's and the American Girl Store for some much needed fun!

Jenn

Planning once again fails...

2011-04-20T21:00:00.000-05:00

Per usual, my attempts at planning have once again failed. Only this time it is for the best. Avery's MRI this morning showed an increase in fluid in her ventricles. That means she will have brain surgery tomorrow afternoon. I was really doubtful that this would happen and had just planned on getting discharged and coming in next week to start over. However, her head had other ideas! This is great for me as I will be here for the surgery rather than at home. Sucks for Nana though as she flew all the way out to see the Big Apple with her Tinkerbelle and instead spent the entire time in the hospital. Gives us a reason to come back I guess.

Since the Neurosurgeon was on the same train with me, she was not slotted for a surgery time until today. This means she is an add on to the schedule tomorrow and will go last. NPO for the entire day is what we are looking at. Not that she hasn't done it before. I have asked for her to be able to eat some breakfast, even if that means getting her up at 5 am to do so. We'll see what they say. The surgery will be done by Dr Greenfield and his colleague, which means she gets 2 surgeons for this surgery. As much as we like to collect Neurosurgeons, we have not actually ever had 2 operate on her at the same time. This is a big deal. While not the same as the tumor resection, this is definitely a scary operation for her to have. She is once again going to amaze us all I'm sure, but it makes me nervous that she is going to wake up with a blank stare like she did the first time. It tooks months to regain whatever it was that she had been before that and with our future uncertain, we don't have the time to wait for that to come back. Don't get me wrong, she is going to be fine. A surgery is not the end for someone who has put in this much blood, sweat and tears, but it makes me nervous nonetheless.

Today we met Abigail Breslin -- the voice of Pricilla on the new movie Rango and we also watched the movie here at the hospital (its only in theaters now). That was way cool and Avery really liked her. Yesterday we found out that video from the Easter Bunny visit was shown on the local news....and of course Avery was on it. So yesterday she became a star and today she met one. Overall, a much more hooked up entertainment segment in this hospital than any of the others. New York has the convenience of Movie Stars I guess.

Avery's eyelashes have made their debut. Another week and she will have them back. Hair and eyebrows are starting, but definitely not as far along in the growth process as the eyelashes. This is very exciting for us. Soon we'll have a blonde buzz cut - just in time for summer again! Her face is starting to fill out I have noticed, although her wait remains just under 23 lbs. The food in this hospital is terrible and the only thing she will eat is a dinner roll dipped in peanut butter. Some care packages have arrived and we now have a much better selection for snacking! Thank you to all that have sent or are sending things. This will help tremendously over the next 2 months as this city is expensive!! Avery has really figured out how to work the parents and nana now. She gets mad at me and reaches for Nana. Seriously kid? Rules are never going to be established at this rate!

All in all, a quiet day for us here. We played a lot and mingled with other kids. We even took a sponge bath, which was much needed after a week of not bathing. I will update as soon as the surgery is done tomorrow night, but it will most likely be late in the evening. Please pray extra tonight for smooth sailing through the Ventricleoscopy and steady hands for the surgeons. I'm not sure this type of procedure is as easy as Dr McDreamy makes it look on Grey's.

Jenn

2011-04-19T19:54:00.000-05:00

Avery has an MRI scheduled for tomorrow morning at 7:30 am. Once we get the results of this we will find out whether or not we are going to get discharged for the weekend or have surgery on Thursday. We have a feeling we will get discharged as we don't think the ventricles have grown in the last day if they didn't grow at all in 3 days. The nice thing is that we will get out of here and get to spend some time with Nana at the American Girl Store. The plan then will be to come back in on Monday for surgery to pull her shunt tubing out of her chest and clamp it. A day or two later her ventricles will fill like needed and we can proceed with the big surgery. I won't be here for this - which is a major downside for doing things next week, but as we all know my plans never work out the way I want them to. Course I am planning for discharge tomorrow, so maybe they will end up not discharging and moving forward with surgery Thursday.

Avery is feeling great and making lots of friends on the new floor. She even had PICU nurses come down to visit her today. She met the Easter Bunny and some NYC firefighters today. She did not like the Easter Bunny at all -- He and Santa rank up there as "scary but mezmirizing." She also saw a magic show this afternoon that she loved. All in all, a much better experience by far over here on the general peds floor of the hospital. She just discovered Nana's lipstick...oh oh. Gotta go!

Jenn

Surgery Cancelled

2011-04-18T14:00:00.000-05:00

After a rough few days in a rather ridiculous hospital, Avery will not be having surgery today. We were admitted on Saturday with the plan to enlarge her ventricles by slowly shutting off the flow of her shunt. However, after an MRI this am we discovered that the ventricle sizes have not changed a bit. This is perplexing to the surgeon and us. In theory if your drain is clogged and you shut off the hose you have running out of the sink to drain the water, than the water should just build up in the sink. This isn't happening, so now the question is is there a blockage? At this point we are not certain what they want to do and are waiting for the team to discuss our options and make a decision as to what the best thing is to do moving forward. Surgery without enlarged ventricles is much more invasive and comes with a higher mortality rate. We are really hoping that other options are a better fit and that she doesn't have to once again go under the knife. As we hear more I will keep you posted.

In the mean time Avery has had a crappy few days. The hospital is lacking in food for kids, activities for kids, and nurses that regularly access ports. As a result, they attempted to access the poor kid 3 times, with 3 different nurses last night and all failed. This of course left us with a kid that screams when you go at her port. Thanks people. She never even flinched prior and now you've ruined that. They then of course put an iv in her hand -- which sucks when all you can do is crawl. Then the anesthesia team didn't clamp this line after her MRI and as a result it clotted....meaning it had to be pulled out. So now we have no line and in the event that she needs to be hooked up for any reason -- we have to go through all that once again. Lovely.
Since they decided to first access her at 9 pm at night, and we had all the drama we did - it meant Avery didn't go to bed until almost 1 am. Guess what time Neuro makes rounds? 4 am! And they wake you up for this. And then again at 5 am ...and 6:15 am....So needless to say she way pretty pissed when she woke up from the MRI. Good thing she doesn't hold grudges. Unfortunate for the staff that mommy does. Luckily Nana is here now to help Mommy in the Psycho Mommy state - so I might not be so mean to everyone - can't promise that though. On a good note, we really like our Neurosurgeon. He appears to be very intelligent and confident and looking out for Avery. I guess in the big scheme of things, he's the one you want to be good most of all.

The picture was taken prior to her MRI - they pasted these gems on her head to use as markers in the MRI and surgery....this was one of our wake up calls at 6:15 am. Didn't seem to bother her though.

Jenn

Our First Week in NYC

2011-04-15T20:25:00.000-05:00

Change of Plans

2011-04-15T20:05:00.000-05:00

We received some disappointing news yesterday from the Drs. After the flow study scan yesterday they were able to confirm that Avery has an obstruction (most likely scar tissue) in her ventricles which are causing her CSF to not circulate from the brain to the spine. The shunt has been doing its job well is the positive thing. In order for the clinical trial to be effective, the fluid must circulate between head and spine. Luckily, the neurosurgeon at Cornell in NYC is confident that we can do surgery to correct this. The plan is to go in tomorrow morning and spend the weekend allowing her ventricles to fill with fluid. Right now, the shunt has left them very small and as a result do not allow for much room to manuever when in the brain. If we change the flow on her shunt, we can back up some of the fluid - expanding that area a little and allowing for the camera to be inserted for surgery. Monday morning they will do an MRI to confirm that she has indeed done this and then she will be wheeled directly into surgery. The surgery will include them drilling a small hole on the top of her head and pushing a camera down into the hole towards the 3rd ventricle. Once in, the neurosurgeon will create a hole in the wall of the ventricle that will act as a new pathway for the fluid to circulate. All in all, a small brain surgery by far -- but another brain surgery nonetheless. Recovery time should be minimal - 1-2 days. After they do this, we will need to repeat the 2 day flow study to ensure that the surgery has corrected the blockage issue.

This week has been much more busy than we had anticipated. A lot of waiting around, and of course a lot of walking. Memorial Sloan Kettering doesn't appear to have the organization that St Jude has, but it does appear to be a great hospital. We are comfortable with Dr Kramer and also with the Neurosurgeon that we met today. Please pray that our comfort level turns into an uneventful surgery and a positive Flow Study for Avery next week.

Although obviously from out of town to any New Yorker, we have managed to find our way around this city pretty well. We learned some important lessons about Cabbies and grocery stores this week...never get in a cab that isn't yellow -- they are crazy and unlicensed. Grocery stores in NYC take all the crap we buy in bulk, empty it out of its carton and mark up the price 150%. Do you know what we paid for 1 Capri Sun juice box?! 99 cents!! Needless to say, we may need some care packages with toddler snacks in them. The walking is the best. We walk about 5 blocks to the hospital each day and Central Park is only about 8 blocks away. We have walked a lot this week and really enjoyed the sights. We have been to Central Park, FAO Schwarz, Radio City Music Hall, and Rockefeller Center. And still there is so much to see! We haven't tried the subway yet, as the lines don't run on the East Side as much, but maybe in the next 2 weeks we will venture over.

Avery has completed the transformation into the Terrible 2's. She officially is unreasonable during a tantrum, and has taken to ripping off her glasses and throwing them. The funny thing is she will stop the antics to give us both hugs if asked. Once done, she then goes back to fighting us to get down or screaming her high pitched neuroscream. Although such sign of relief for us, I really don't know how the rest of you parents survived this stage with your own children without the "she has cancer - let it go" mind set that Jeremy and I have ingrained in our heads. I'm just saying. WOW. Now this isn't a 24/7 type attitude that we see, but it definitely rears it's ugly head a few times a day. Oh and eating out is no longer the easy task it has always been for us in the past. We now understand why no one eats out when they have a 2-3 yr old.

The Ronald McDonald House is a very nice facility. We haven't spent a lot of time exploring it as we have done a lot of exploring in the city instead. They have a set up very similar to the Target House with dinners and activities for the kids and families. It will be a nice place to spend time over the next few weeks when we need to escape the hustle and bustle of the city.

I've asked my brother to tweak the blog a little -- jazz it up so to say, so you may see some changes over the next few weeks. Eventually we'll figure out what fits. Hopefully everyone noticed that I finally found out how to get auto messages sent when I enter a new post. Sorry that took so long, I am not exactly savvy on the blog thing yet.

Please pray for Avery as she once again goes under the knife for her head. Pray that there are no complications and that we are able to proceed as planned to solidify the outcome that we already know is coming -- remission. The next few weeks are going to tough on us as a family as Jeremy and I trade places each week. We won't spend any time together unfortunately and that is going to be a change from the last time. We are really trying to avoid missing as much time away from work as possible and that means flying on the weekends only. Thanks to all that are helping us by taking us to the airport, visiting, watching Cy & Jersey and collecting the mail. And also a big thanks to everyone for the prayers and support. This is one more little bump in our journey but nothing we can't handle.

Jenn

Plane Ride

2011-04-11T21:06:00.000-05:00

Well Avery did not win the "best kid on the plane" award today. She was not happy that the flight attendant wanted her to sit in her seat with her seat belt on for the whole ride and of course we were sitting at the back of the plane with the woman so we had to be good. Luckily we only annoyed the few people around us as the noise in a plane is horribly loud. After a 30 min wait on the tarmack and a 45 min circling around NY - we finally made it to the City. We stuffed ourselves - and I mean stuffed - into a cab and headed for the Upper East Side of Manhattan. Considering we really had no idea where we were going, it was nice that the cab offered a commercial screen with a map on it -- literally you can follow your route and see where you are going! And you can pay with a card!! This would have been really nice a few years back when we had to bribe the cabbies in KC to take us to an ATM on the way home to get cash, and throw in a McD's cheeseburger as well.

Ronald McDonald House is a really nice facility and our room is perfect for what we need. We have a tv and a bed and a shower - what more do you need? There is a playroom for Avery and a large communal room to just hang out in. They have 2 patios, a music room, and small greenhouse. Already Avery has begun stalking some new friends...older ones, but friends none the less. These poor kids were trying to have a very adult game of dominoes, complete with laughing, texting and swearing whenever it seemed they could use the word correctly and Avery busted in the game. Nothing better than a snoopy 2 year old kid wanting to hang out and ruin your teenage hang out. The kids were very sweet though and let her hang out with them for a few minutes - which she absolutely loved. Man she needs a sibling.

Tomorrow we have our first appt at Memorial Sloan Kettering. We walked down towards the hospital and it was actually rather close -- only about 4-5 blocks. We need to be there at 1:30 tomorrow afternoon and I don't believe we will have to be there for too long. Wednesday and Thursday we will have to go back as well to do the flow study on her CSF. They will check her flow and make sure things are moving appropriately for the injection to be effective. They will also do a dosage check at some point, but not sure when that is going to happen.

We have a list of things we want to do while we are here in the city so we need to make a plan of where everything is and when we want to see it. Daddy is not as interested in the American Doll Store and Macy's as we are. It's been a long day and munchkin is getting cranky, which means it's time for bed.

Jenn

2011-04-10T21:13:00.000-05:00

Tomorrow we leave for New York at 7am -- bright and early. A big thanks to Brian for taking us to the airport at 4:45am. We are anxious to go and excited to be nearing completion of this treatment. Who knows where the road will lead after this...hopefully somewhere slightly more normal. Tantrums and giggles, walking and talking are the places we really are looking forward to. This has been a tough road, but one that is making us stronger as a family, as a couple and as a community. The lessons this little girl has taught all of us are numerous and reach far and wide. Our one hope is that this experience has helped all of you in some small way. The positives that have come out of this are many in our book, with one really solid negative of course. Overlooking the nasty Cancer piece of the journey has allowed us to focus on some tremendous friendships, some amazing charitable opportunities, and God. All of these pieces had been somewhat neglected before we started down this road and we are very happy that we've rearranged those priorities to where they need to be. Thank you to you all for following us and supporting us as we forge on in the fight. Avery is leading us as always, with a smile.

Jenn

Surgery

2011-04-08T20:45:00.003-05:00

Avery went in for surgery this morning - bright and early - we had to be here at 5:30 am! Her surgery was at 8:30 and she got out of recovery around 10 am. She did fine and the surgeon said the valve placement on the shunt was smooth. They reopened the scar near her shunt and increased the opening by a few inches. We haven't seen it yet as it is nicely bandaged, but later this week we will take the bandage off and see the handiwork and all those new stitches. The new valve will stick out a bit more than the original valve did so you may actually notice this one without us pointing it out. This valve will allow us to slow the flow of fluid going into her tummy area which will give the new medicine time to circulate and kill off cells. We are patiently waiting for Avery's eyelashes to grow back in as this is the first sign on hair growing back. We are hoping that by the time we get back from NY she has a nice little buzz going on that cute head of hers. Avery woke up pretty irritated with everyone, as she usually does when they give her the gas. After we got her upstairs in a room and settled a bit she fell back asleep and slept for most of the afternoon. When she finally woke up she was back to her chipper self, giggling and laughing and wanting to run. The nurses have all commented on how great she looks already and how fast she bounced back. Apparently they've not been following her blog. The kid bounces back faster than a yo-yo. Tomorrow we are hoping to get discharged late morning and get on the road. The drive is a long one and she is not going to be too happy after having to spend all day in a hospital room today. Once we get home it will be a quick unpack-laundry-repack. Our flight leaves at 7am so we are heading to the airport early! It was nice to see our friends and the Drs & Nurses at St Jude. Our friend Belle started the ICE chemo regimen that Avery just finished. We pray that her body takes it as well as Avery's did and that it helps her achieve that next birthday that she needs before they do radiation. Colin is toodling around on the slickest blue walker you have ever seen and he looks absolutely amazing. Although we didn't run into KK, I know she had clear scans and is doing very well at home. We didn't get to see Megan - as she is not coming until Tuesday of this next week, but she is doing very well and growing like a weed. The plan is to return in 3 months for follow up scans. Well....this momma is tired....4:30 was early this morning. So next step is to kick Daddy back to the Grizzly House and get the munchkin to sleep. Hoping this won't be a huge battle tonight as she snuggled with Jeremy and watched a little AFV, which resulted in both of them snoozing for a bit. Thank you for all the messages and prayers this week. It was a tremendously stressful one and we really needed the extra support. Next week's stress will be high as well, but mostly because a couple of midwesterners are moving to the BIG CITY all alone...with a kid, and no clue where we are going. But like before -- we'll figure it out. We always do. Jenn

SCANXIETY

2011-04-06T09:54:00.002-05:00

Avery's MRI results were inconclusive yesterday so we were waiting for the LP to further determine her results. The radiologist noticed an area at the base of her spine where it appeared to be slightly more highlighted than it had been 2 months ago. This can be caused by 2 things; appearance of cancer cells beginning to line the walls of the spine or just a variation in the length of time the dye contrast was allowed to sit and therefor it "glows" just a little brighter. The LP results came back this morning All Clear -- so the Dr's are going with option 2 - although they will continue to monitor that area closely moving forward.

Yesterday was a rough day on us. The what ifs and anxiety caused by waiting is excruciating. To think this is the path we will be on for the rest of our lives is overwhelming by far. I don't answer the phone or texts when we get in that position so to those of you that lacked a response from me - that is why. Jeremy however is a sucker for distractions and answers his no problem...just for future reference.

Avery is looking and feeling good today. We have an appointment with the Neurosurgeon this afternoon and then after that we are taking off for a day in Nashville. The Grand Ol Opry is calling our names and we thought we'd take advantage of the short drive. We are staying in a really large hotel with lots to do and a big pool. Avery is finally going to go swimming!

Keep the prayer coming!

Jenn

AVERY's WALK - JUNE 4th

2011-04-05T20:41:00.003-05:00

More information was just shared on Avery's Walk on June 4th, 2011

Please check it out -- we'd love to celebrate our end of treatment with everyone!

http://www.walkforavery.com/

April 2011 St Jude Visit

2011-04-05T19:27:00.003-05:00

Yesterday and today were pretty typical days for us here at St Jude. Yesterday she had her MRI, PT and OT follow ups, labs and a Neuro Oncology visit. She was a pistol...like she has been for the last few weeks. She wants down - she wants to walk - she wants to go this way and that - and let me tell you she is not quiet if you don't let her. The terrible 2's have reared their ugly head and with each temper tantrum, we quietly thank God that we get to experience these moments. Unreasonable, irritating, and completely illogical as they are -- they are also NORMAL. More than anything we'd love to have a little more of that word in our lives.

Today she had her ABR and LP, a eye Dr visit and a visit with Dr Armstrong. Results for the MRI and LP will be in tomorrow. Once we have those we will share. The Dr's have discussed with us and regardless of these results, we will continue down the path we are already on. This includes the Clinical Trial at Sloan Kettering. It's been a tough day today. We learned the prognosis of a child that was here with us last year is not good. The tumor is very quickly taking over his little body and although he is fighting with every ounce he can muster, they haven't given him long... Our hearts ache for this family. I can't pass the mom in the hall without crying and it is so completely devastating to know that there is not a single thing I can say to make her feel any better about things. All of us here know that the chances of losing a child are so very likely, but it doesn't make it any easier to deal with. As strong as each one of the parents of St Jude are when we return home to our family and friends, here we are allowed a little more freedom to grieve for the lot that life has thrown us. It sucks. Cancer sucks. There is just no better way to say it. IT SUCKS.

Surgery is scheduled for Friday. We have to be there at 7:30 am for admit and then it's a hurry up and wait game until Dr Boop is ready for us. Post Surgery she will be moved to the Neuro Floor and observed for 24 hours. If the surgery/recovery is done by 1pm then we will get released Saturday at 1pm. Regardless, we will be leaving Saturday (pending any complications). Sunday will be a big day of unpacking and repacking for our journey to NYC. Out flight leaves at 7 am on Monday morning. We are excited to see the big city and get a chance to hang out with one of our buddies from St Jude, Colin. We also are looking forward to meeting up with one of my close friends, Laura from high school and college that lives in the city. With a whole city full of walking to take on -- I think Avery is ready. Question is what will NY think of this absolutely adorable blue-eyed baldy from the Midwest with a definite plan of what she wants to do? I suggest getting out of the way City Slickers....

Jenn

2011-03-30T21:54:00.000-05:00

Quiet Week

2011-03-29T19:13:00.003-05:00

As we prepare for our upcoming trips, our week has been very quiet...exactly how we like it. Avery has recouped her energy, her appetite and her counts. This is great for us and we look forward to more things coming back. Her eyelashes are just starting to sprout and we can't wait for the hair on her head to start coming back in. We worked hard on her new big girl room this past week and we accomplished a lot. We moved our bed into her room and left off box spring so she has a low level, big girl bed. She LOVES this. She hasn't slept in it yet, as we are missing the railings to keep her from falling out, but she loves to climb up in it and play. We are looking forward to returning from NY and letting her sleep in there like a big girl.

We leave on Sunday morning for St Jude and will spend the entire week there. Her MRI is on Monday, but the LP is on Tuesday along with her hearing test. Wednesday and Thursday appear to be open now that we have moved the Flow Study to Sloan Kettering. Friday morning she will go in to Lebonheur Children's Hospital to have Dr Boop insert the programmable piece into her shunt in her head. We believe this is a fairly simple procedure, but nevertheless we will have to stay the night and not be able to drive home until Saturday afternoon. Sunday will be a huge unpack and repack day for us as our flight leaves for NY at 7 am on Monday morning.

We are excited and anxious all the same....so easily this trip to St Jude could turn out differently than we are hoping and that is a very heavy weight on our hearts. We can't seem to envision a life any different than the one we lead now so we are taking that as a sign that for once, things may go as planned. That being said, now is not the time to cut back on the prayers people. Please pray that our results at St Jude are good and that the surgery on Friday is short and sweet with an easy recovery and very little pain. Please pray that the amazing work they are doing at Memorial Sloan Kettering is the answer to all of the prayers we all have spent the last 15 months sending up to the powers that be. And lastly, please pray for the miracle that this tough little girl certainly deserves.

Jenn

Breaking Free

2011-03-24T17:27:00.003-05:00

Change of plans....apparently the Dr's have decided Avery is stable enough to go home. No complaints here by any means, but definitely a little surprised. She has a week of antibiotics to finish up for this mystery infection that has yet to rear its ugly head in her cultures. This is easy enough to accomplish as we did this last round after her tooth infection. It requires some in opportune times of administration (for instance 1 am is the next dose) but it is manageable.

It will be nice to get home and spend some time with Nana and GJ. And we know the most important thing, Jersey Anne, is missing her buddy right now. I found a sweatshirt for Jersey the other day that is that aqua blue of Avery's glasses and it has white Skull & Crossbones on it. Jersey is going to be so ticked when I put it on her -- but man how can you pass that up? I'll take a picture -- you all will enjoy it.

Jenn & Jeremy

Update

2011-03-23T18:00:00.002-05:00

Avery spent yesterday in the PICU. She ended up going into Septic Shock on Monday night due to the infection and they had to put her in the PICU so they could administer the right drugs and watch her very closely.

Scary doesn't even begin to describe the night we had. Right after I finished blogging, Avery spiked a fever again and the team on the Oncology floor decided to call the Rapid Response team. This is a team of dr's and nurses and staff from all over the hospital that come to you immediately to assess the situation and help make decisions. This meant 20 people came flying into the room as Avery went down hill. It was a circus. And scary - but we were surprisingly calm. The resident from Oncology kept asking us if we were ok. How can you freak out when you really aren't sure what is happening....so for the time being we were fine. We watched as they assessed and shoved giant amounts of fluid into her little body, one enormous syringe at a time. Finally they decided to take her and we were moved to ICU where another team of Dr's continued to work on her. This continued on until almost 6 am when they finally managed to calm her down and she fell asleep. Avery's body went into septic shock, which means the infection in her body was not able to be fought by her body because her counts are at 0 and she has no fighters in her body to fight infection. Once this happens, Avery's blood thickens making it harder for her heart to pump blood to all of the vital organs. As a result, these systems start to shut down. THIS IS NOT GOOD. So for all of the times we've made you wash your hands and avoid a visit -- this is why. Jeremy and I dozed in a chair for an hour or so before the morning rounds began and then we met with each of the teams to find out the plan for day.

Avery slowly recovered Tuesday morning. As she slept, her BP came up and her heart rate went down. Oxygen levels became more consistent and they weaned her off the Dopamine. By 4 pm they decided it was safe to move her back to 4 Henson. We have never been happier to go. The PICU is a scary place - quiet, private, restricted, controlled. The crazy halls of Henson are much more welcoming even if we have to spend our time attempting to get out of Isolation - when we aren't supposed to be in it.

Today was a mellow day. She has very little energy and her appetite is gone. She will however, eat Reeses Pieces out of Nana's pocket at any point in time. So whatever -- a diet of chia tea and reeses pieces it is. She took a 3 1/2 hour nap that I am certainly going to pay for tonight, but you really can't justify waking up a kid that just spent the day in the ICU with a life threatening issue. So sleep may not be in my future tonight. Oh well, there will be plenty of time for that later on.

The positive to this week of scariness is that we got to see both Grandma Lippold, Nana and GJ. It was very exciting to be able to see them all before we go on our trip to New York. Thank you to all of you that sent prayers yesterday -- it was much needed and it worked. Please keep her in your prayers as we move forward through the weekend and pray that her counts come up and we have a fairly uneventful next week and a half. April 3rd we leave for Memphis and April 11th we leave for New York. Both bring us anxiety and hope, but mostly they bring us closer to the miracle we are so desperately praying for. A rough week for us as a family, but we keep in mind that it could be worse, and we saw a glimpse of that as we walked through the PICU unit yesterday. Once again, we urge you to appreciate what you have and be thankful for each day you have with the ones you love.

Jenn & Jeremy

A Mother Just Knows....

2011-03-22T02:34:00.002-05:00

Well -- it's 2:35 am right now and yes...we are back in the hospital with a fever...

Not to say we are surprised, cause really we aren't -- I mean we didn't say our goodbyes when we left last week -- kinda figured we'd end up here before the month was over. We took Avery in for blood yesterday. She was low and whiney and we decided spending a Sunday together as a family at the hospital beats just me and her going on Monday. After filling up her tanks and leaving at 7:30 pm on one of the nicest days yet - we took her home and noticed her favoring a certain part of her body that most of us are pretty hard on. Her BUM is broken people. So this morning I called the pediatrician, concerned we may have hemorrhoids...and took her in. We discovered she had instead, a rather large tear in her pooper. How awful this must feel I am sure...to be constipated, nauseous, weak and broken tooshie all at the same time...I mean really at this point the only thing that could make it worse is a tooth coming in....ok maybe there are a few other things that could make it worse but you get my point. She is in agonizing pain and there's not a thing we can really do about it. They gave us some litacain - numbing cream to put on it, but the effects are short lived and we can only do it three times a day.

I told both Nikki and Jeremy that we would be in here by the end of the week for sure and look at that - 6 hours later that's exactly where we are. How can you not expect to get a fever when you have a hole in your hiney, right next to the most bacteria infected place...other than your mouth? It was inevitable. So be it...

Fever spiked pretty high and they put her on tylenol for that, 3 antibiotics to cover their bases entirely, and then they loaded her up with the good stuff - Morphine to get rid of the pain in her ass....literally. Right now we have a slew of nurses and residents trapesing through her room as they attempt to readjust the "blow by" in front of her face. She hates this thing and twists her head every time they reposition. At some point they are going to put the cannula in and she hates that even more. Understandably as crap up your nose isn't always pleasant. Her oxygen saturation is low and her blood pressure is as well so they are pumping her full of fluids and monitoring her closely. She just wants to be left alone and I can't blame her. We are in for a long night for sure, but we'll get through it - especially with the good drugs...

They just informed me that they may move her to the PICU. Apparently the fluids they have given aren't helping her blood pressure and they may need to try new meds to bring that up - all of which would require the PICU... We'll see.

Please pray for an upturn in events and fast healing in her bottom -

Jenn

Pieces Falling into Place...

2011-03-16T20:17:00.005-05:00

The week has been a good one. Avery has felt great all week and has had a ton of energy. This has aided tremendously in her strength training and we've found her extremely interested in walking and climbing and bending and twisting. It's so great to see her have that energy after 6 rounds of high dose chemo. She is especially excited about this warmer weather we have so that she can get outside in her cool walker and stroll about the neighborhood.

I have been in contact with the Dr's at St Jude and Memorial Sloan Kettering and it appears we are closer to a date for our NY trip. At this point we plan to spend the week of April 4th in Memphis getting our diagnostic tests again, as well as a flow study for her CSF (spinal fluid) and brain surgery for an addition to her shunt for the study. All in all we should be able to come back by Friday of that week - but I suspect we will immediately turn around and leave again for NY. The Dr in NY would like to see us by Monday the 11th, so we will have a very quick unpack and repack for the next leg of our journey. Jeremy and I plan to fly out to NY together and then he will return home to work -- we hope to trade off weeks through the month until she finishes the treatment.

The ladies of Ryan Lawn & Tree are organizing a walk for Avery after she completes her treatment in NY. It will be June 4th at Shawnee Mission Park - so save the date! As soon as we have more details I will make sure to post. It will be so great to see everyone again. We sure hope everyone can make it out. By then she may actually have some hair coming back in and she may even be able to walk a little bit herself! Course we have the bling bling gold walker as a back up - so no worries there.

Every day - something amazing happens or is shared with us. On Friday we were assigned to a nurse to prep us for surgery and while we were waiting for the surgeons to finish up the case before ours we got to chatting. This nurse was so excited to tell us that her 3 year old son had been diagnosed with Neuroblastoma and had also gone to Sloan Kettering for the 3F8 Clinical Trial. He relapsed 3 times before doing this study and this was the last treatment he received. Crazy huh? Want to know what is even better? Her son is now 24.

Kinda gives you the chills - huh?

Next.... today a coworker told me that his teenage daughter follows very closely with Avery's story and she has shared it with many of her friends and their family's. On one particular occasion she was over at friends house and sharing Avery's journey with the friend's aunt who is pregnant. A few days later this friend called to tell her that her Aunt had decided to name her baby girl Avery. So for most of us that don't have a child named after us -- My two year old does -- kinda makes you want to cry huh?

Like I said -- amazing. This experience has opened our eyes to so much and while it sucks...and I mean really sucks, to be going through this, there are some amazing things that we would have never done/thought/said/shared/experienced if we weren't on this road. We are different people than we were a year ago. Better, in so many ways. Stronger, for so many reasons. And blessed with so many amazing things. The harder you work the more it means to you -- I am just waiting for the day when we can finally stop working and start enjoying life a little more. In the mean time -- we roll up our sleeves and keep on trekking cause bottom line is You Don't Have a Choice.

New Port In

2011-03-11T20:18:00.002-06:00

Avery had surgery at noon today to replace the port that was malfunctioning. The surgery went well and they were very pleased with the results. They did have to move the port to the other side of her chest unfortunately, but at least the right side will have some time to heal then. We have started the count down again until a bath and swimming can be achieved. Today is day one -- we have to wait till day 14. The port was unfortunately broken when it was accessed at some point this week. They put a titanium one in this time, so we won't have that problem again.

Avery seems to be unphased by today's events, all though she milked it for all she was worth right after she woke up in recovery. She pulled the sad face and whined a little bit and literally the moment we walked back into her room she lit up like a Christmas tree and wanted to play. Really kid? Seriously? I think we are going to have a problem here as she gets older.

The plan is to do another 24 hours of fluid and then we should be discharged tomorrow evening. We are really excited to get out and maybe enjoy some of the sunshine we missed today. Then we watch as her counts drop and slowly come back up. I'm sure next week will include a transfusion or two, since we already had a transfusion last night of blood. Hopefully she will continue to feel good through the next 2 weeks and her eating will continue. We are definitely done with the Old People Milk. The bottle has lost it's luster and we have moved on to strictly big girl cups. Her favorite is the 28 oz glass with the mega straw that they give patients at the hospital. She now has her own glass and it's almost as big as she is. Whatever makes her happy - right?

Jenn

Last Day Excitement

2011-03-10T17:31:00.002-06:00

Today was supposed to be Avery's last day of chemo -- forever - for the near future -- for now...but regardless it was the last one planned for her at this point in time. This is the first time we truly have been able to say that, as we had maintenance chemo for 6 months after the last bout of chemo. Unfortunately, someone had another plan.

This afternoon after her Cyclo had run we noticed blood on her t shirt. This was coming from her port site and was concerning. They removed the needle and set us up with a regular line and then scheduled us for a quick dye scan to see what was going on. The ladies from the inter- vascular division came up and poked her twice - both times she didn't make a peep, and found a good vein in her hand so we could resume the fluids to flush out the chemo. We then took her down to the radiology department and flushed dye through the port and took pictures. It was discovered that her port line had a hole somewhere and that it needed to be replaced. Luckily, we were able to sneak onto the schedule tomorrow at noon and then we can finish the very last dose of chemo that she didn't get today. We will then need to stay for 24 hours of fluid so our Friday break out day - has now turned to Saturday. Nothing in the big scheme of things and something we will gladly take if it helps us in the long run. She will need to be knocked out again for surgery tomorrow, so she won't be her wild and crazy self this weekend. Luckily Nana is still here and waiting for some snuggles and rocks that she will most definitely get.

Biggest disappointment is that the new swimsuits will not be put to use quite yet...her steristrips had finally fallen off...the port access was almost done...and the swimming pool was calling our names. I guess it will just have to wait a bit longer!

This little girl never ceases to amaze us....the only tears that fell were from being overly tired after being stuck with needles 3 times this afternoon and lain on a hard table with a huge box in front of her face for xrays....even then, it was only a few and never a sound. I can't even make it through the singing at church without crying - good lord. How ever did we produce such a strong little person - I will never know. She has carried Jeremy and I through this experience and we are so humbled by her daily. Kiss your kids people...

Jenn

LAST CHEMO ROUND HAS BEGUN!

2011-03-08T22:39:00.002-06:00

It's official....our last round of chemo FINALLY started on Monday. We honestly couldn't have told you whether or not we would have made it in. Just when you think you know the chemo and the cancer and your child -- wham! it changes... But luckily after some dramatics surrounding the politics of who could draw blood and drop it off at the lab, we got the call we have been waiting for for 2 weeks -- Avery made counts! So off we went to the clinic at 3pm where we promptly sat for an hour and a half, starting pre fluids, pre meds and even the chemo, before they moved us up to 4 Henson. Course when we moved up there we were put into the transfusion room while we waited for a room to be cleaned....finally after an hour of that I asked what the hold up was and they said waiting on a crib. A CRIB?? You mean to tell me that Nana and I have been entertaining her in a common room while you look for a bed? I don't need the bed at 6 pm for God's sake! Just let us in the room so she can play. I swear....some people's children....

Anyway, point being we have finished day 2 of the 5 day course and couldn't be happier. She was good today, although she went to bed really early....like 7:30 early. We all know that isn't normal -- I mean last night she refused to go to bed at 10:30 and was throwing a fit every time we laid her back down in bed. Crazy - but I do suppose those chemo meds mess with the body pretty early into your 6th round (or 10th for the year) of chemo. We will most likely be in for a slow to rebound count game again this month and her energy level may stay a little low for a bit longer, but bottom line is it will come back up and we'll move on to our next weapon.

Avery has been talking a lot more in the last few weeks. Something we are very excited to hear. She can of course say Daddy and Jersey (the dog) and we even heard a few Nana's yesterday... what she can't say is MOM - MOMMY - MOMMA - or MA....she calls me DAH. Really? I gave birth to you....fed you......gave you thick, beautiful hair(when you aren't bald)....dress you all cute for your boyfriends and you can't say mommy? Seriously?

We are anxiously awaiting the approach of a swimming pool as our steri strips fell off this week and the chemo is done this week and then counts will come up soon...I even purchased a new "mommy" bathing suit that was a little more appropriate for wearing around lots of kids. Jeremy vehemently said no to the One Piece indicating that I was too young to wear that. However, notice at 26 he told me I was too old to have a belly button ring. Really I can't win.

The next few days should be pretty simple and we expect them to go by quickly, especially with Nana around for entertainment. There was a short period of time last night where the nursing staff put us into ISOLATION by accident and we very sweetly told them to take us out or I might start a riot in the hallway...needless to say it was fixed rather quickly.

Lastly, thanks to all the friends that were able to make it to the house tonight for the Rendi Party. It was nice to see everyone and get a chance to hang out for a bit. For anyone that wasn't able to attend, or was just curious....here is the website: www.personalize.rendistyle.com The party will be open through Sunday and there is a buy 2 get one half price deal. These are adorable wooden frames and wall hangings that can be personalized for you. They range from $20-50 a piece and make great wedding or baby gifts. Let me know if you have any questions - all you need to do is get on the website and order directly from there. The party number is 165 but she doesn't have any parties open right now except mine, so no worries if you forget. My email is avery.christiansen@gmail.com if you want more info.

Thanks for all your continued prayers and support....let's hope this one is smooth and quick and that she recovers without any additional issues!

Jenn

Chemo Pushed Again

2011-03-04T20:56:00.002-06:00

Tried again today -- 4th time. No go - she is still sitting in the 400 range and we need her to be above 500 to be admitted. We'll try again on Monday. In the mean time, Avery is having a ball and going strong. She is all over the house and has major opinions on everything. We have definitely hit the terrible two's! This girl knows exactly what she wants to do and when she wants to do it and if you are not on board -- you are going to hear about it!

We lost a friend this week but added a new member to Team Avery in heaven. Please keep the Hughes family in your prayers this week. Candy was an amazing woman and a very strong fighter. She will be missed by many.

Nana is arriving tomorrow and we can't wait! We get a whole week of Nana time and we both need it...Unfortunately we most likely will spend the entire week in-patient but Nana is good at entertaining us up there so that's ok.

Other than that, we are still waiting on word from NY on a start date for the new treatment. St Jude has bumped back our next MRI/LP and Ommaya surgery to the first week in April, so we know we won't be headed to NY until after that. So for now we wait. Avery seems to be doing great with her PT and we have seen some progress in her pushing up to stand. She of course isn't standing on her own yet, but she may be getting closer.

Jenn

2011-02-27T17:30:00.002-06:00

Avery wasn't admitted on Friday like we had hoped. The plus is that we got a few more days at home to play instead of being locked in a hospital room all weekend. As a result of being denied admit on Friday, we were able to head over to Daddy's office and say hello to all of our Ryan family. Jeremy was of course MIA and they had to call him to get him back to the office. (he was on his way to bring us lunch at the hospital only we weren't there!) It was great to see everyone and Avery had a blast hanging out at daddy's desk.

Saturday we had a playdate with our BF Harper and Miss Daisy. It's been a while since we had seen him so it was great he was able to come play. Harper is only 6 months older than Avery and for once it finally feels like maybe she is catching up in size. We dwindled down to 10.0 kilos again over the last 2 weeks and that has been really disappointing, but we'll keep working at it. She won't be eating much over the next 2 weeks, but after that the gloves are off! She also hasn't been as interested in taking a bottle which means our go to calories are no longer as easily taken. So much for old people milk. In case anyone needs any Ensure Plus -- we have lots.

We'll try again tomorrow to get admitted for this last round of chemo. It's not surprising we didn't make counts last week - she had been hospitalized with some crazy bug the week before and then had surgery on Wednesday. The body doesn't do a lot of rebuilding when it's fighting infections and trauma. She was at 480 anc on Friday so we suspect tomorrow will bring us the 500anc that we are looking for. This week will go by considerably slower since we will spend the whole week in patient. Time seems to go quicker when part of the the 5 days is the weekend. But like the last 14 months -- we will survive this and it could be worse.

We are anxiously awaiting the arrival of spring and a change of scenery. I planted bulbs 2 falls ago that I haven't seen yet. This spring will be filled with discovery as our 2 year old starts to experience the outside world. I can't wait to show her the tulips growing and the pear trees flowering. But most importantly I can't wait to put her in her new swimsuit and plop her in a pool! Jeremy and I have been contemplating taking her to the Great Wolf Lodge so we can get her swimming now. She just loves the water in the tub so we think she will love the pool.

Jeremy and I are doing well. Going back to work has been a good distraction for me. Although my schedule changes all the time due to appointments, rehab and hospital stays...it's nice for me to have some control over something. As most of you are aware, I am a planner and not having control just about kills me. When I am at work I feel at least somewhat in control. Jeremy's work hasn't picked up quite yet due to the ever changing KC weather. Hopefully we are on the downhill slide into spring so the Ryan guys can get their stuff done!

I don't have any further details into our NY trip. At this point I am waiting to hear back from the Dr's at Memorial Sloan Kettering. Once we do, we can get some dates in place for her surgery in Memphis and a start date for the clinical trial. We are excited for this trial and really hope it will be the nail in the coffin so to speak of this awful monster.

2011-02-24T11:10:00.002-06:00

Hi Everyone
Just a quick update on Avery. She did get the Hickman removed and the port put in yesterday and the Surgery went great. She was in a little pain but is all over the place today. She didn't get to start her last round of chemo do to low ANC counts (only 370). The plan is to go back in Friday morning and try again. We are so excited about the port! She can be a little more kid like in the tube and this summer she can do some swimming with her friends. We will post again this weekend to update everyone on her last round. Thanks to everyone again!
Love
Avery, Jenn, & Jeremy

Almost There...

2011-02-20T18:29:00.002-06:00

We had a pretty low key weekend - and some beautiful weather. Avery was so glad to be home and spent the weekend revisiting all her toys. I am dreading leaving on Wednesday morning again and having to pull her away from them all again. Today she managed to bang up her head pretty good, so Jeremy took her in for labs and ended up getting some platelets. The good news is that the rest of her counts were looking good and we are heading up again. This means we should be cleared for the Port placement and Chemo Round 6 -- the last round.

We are anxious to get this week over with and be done with the Chemo. We are ready to move on to something new and something that doesn't drain her so much. We had really hoped to be further along in our therapy, but with the snow, the unexpected fever, and now the last round, we haven't accomplished much. Our goal is to get her walking as soon as we can so she has a little more freedom.

Nana is coming for a visit in 2 weeks and we can't wait for that! Then after she leaves we will head down to Memphis for another set of scans and tests. Then after that we will go to New York to start our next clinical trial at Sloan Kettering Cancer Center. Avery will be participating in a Phase II study that takes mouse antibody that attaches itself to cancer cells and injects them with radioactive iodine. When the antibody attaches to the cells - it penetrates with the radioactive iodine, killing the cell. The hope is that this will find those lingering cells that the chemo hasn't killed and kill them. If we can successfully do this - Avery will go into remission. The Dr's didn't think this was an option for her last October. We knew better and have proven it. The prayers and well wishes are still needed, so keep them coming, but keep in mind - they've been working!

Jenn

Her Teeth again -- Of Course!

2011-02-17T19:30:00.002-06:00

Well we finally managed to bust out of the hospital this afternoon after a very long week of isolation. Avery has somehow come down with some gram negative bug that caused her fevers and left her with a blood infection. Luckily the antibiotics she was on starting the moment we walked in the door should have cleared it up. We will continue to take antibiotics via her line for the next 7 days. This of course means we will learn how to use some sort of infusion pump at home and our next dose is due at 3am. Ugh. We've been told this should not interfere with next weeks surgery or chemo, but we'll see what happens.

The 3 of us are about done with the hospital stays and are looking forward to a few days at home. Next Wednesday is coming fast, but we know that this very well could be our last inpatient stay -ever...so we'll suck it up and paste a smile on our faces and cherish that feeling of it being our last time. The next step of going to NY is going to come fast, but luckily does not require any inpatient stays or icky chemo. She has done so amazing - so incredibly amazing and as I sit here thinking about all the crappy times we've had to endure in the last 14 months- it strikes me that she's had it ten times worse and never complained. To fight this hard and to still be so strong, so brave and so happy - well it just puts our complaints about hospitals and a little lost sleep to shame. Jeremy and I will never be as incredible as Avery is - and boy are we proud to be her parents.

For those of you in Kansas --enjoy your warm weather weekend! For everyone in the North - well, you should think about moving to KC...hehehe.

Jenn

Another Holiday, another hospital stay

2011-02-14T21:53:00.002-06:00

It's almost as if we should make reservations...I mean maybe if we reserve a good room ahead of time, we could spend St Patrick's Day in a good room with a tub and a window view! We've decided that the hospital is the place to be on each and every holiday, although it's not for their wonderful way of celebrating -- more for the humor it brings us each time we land in here.

Avery started running a fever on Sunday night, so once again we packed up the car and brought her in at 9pm. The usual routine ensued...lab draws, cultures, antibiotics, and tylenol. We added a chest x-ray to make sure she wasn't too backed up and found out she was very gassy - and therefore miserable. We spent the next 8 hours attempting to settle her back to sleep and ignore the nurses coming in and out. She woke up around 1am and was not happy so we asked for some gas drops...she woke up again a few more times in pain and then again at 4 she started to spike a fever again...more tylenol. Rough night for us all, especially when she decided she wanted to get up at 6:30am and Daddy had to get up with her while I left for work. We both loaded ourselves up on caffeine and slapped a smile on our faces, heading straight into the day. Role reversal for us both, as I found myself attempting to be nice to everyone and Jeremy tried to remember to ask the Dr's about all the tests and what if's. Tomorrow will be a little more normal - if you can call our life normal, as he goes to work and I log on from the hospital while entertaining a 2 year old.

Jeremy and I were able to sneak away for some Mommy & Daddy time on Saturday and that was a much needed break for us both. It's crazy to think that the last time we had really done that was for our anniversary in August. These last 6 months have really flown by, like they do every year with all the holidays, but this year seems so much quicker. Jeremy and I spoke to St Jude and the Dr's are recommending we take Avery to Sloan-Kettering in NY for a Phase II clinical trial when we finish our chemo here. This is most likely what we will end up doing, but it means more time away from each other. The good news is that the time is much shorter and 5-6 weeks in length as opposed to the 5-6 months we did this time last year. And - as much as we love St Jude -- NYC is way more fun! As we get more information and make more decisions I will let you all know...but for now -- this is the idea....

We are hoping to be discharged tomorrow night after her 48 hours are up, but we'll see. We return next week for her 6th and final ICE Chemo round and we are very excited to be closing this chapter of treatment. On Wednesday she will also be having surgery to remove her Hickman line and replace it with a port that is under the skin. This is a huge thing for her and some fun baths and pool time, but also for us as we say goodbye to the routine of changing the dressing every other day and flushing her lines each night. I can honestly say that I am over this process and ready for something new. The hospital refuses to give me a Nursing title so I am totally boycotting starting next Wednesday. I'm just saying...I mean really I think every cancer parent deserves an honorary degree of some sort - we know just as much about the important stuff as they do --we know the kid. That deserves something...right?

Jenn

Round 5 Complete

2011-02-06T18:03:00.003-06:00

Avery finished round 5 with flying colors - of course. We don't expect any different from this absolutely amazing girl. She lost the rest of her hair this week and looks really different - surprising how a little fuzz in the front can make it seem like there is more there. Now I know how bald men feel. She seems to be feeling fine and ready to rock. She had a little bout with a UTI - but rather than give her more antibiotics and start the C Diff cycle again, we opted to wait it out as her bacteria wasn't as high as they normally would see and treat. Hopefully it clears itself up in the next few days.

We were very excited to have been invited to speak at the TKE convention this weekend on behalf of St Jude. We were asked to attend and represent the St Jude Family Community as the men of TKE are large supporters of the hospital. It was fun to see a huge group of the greek system all together like that - it has been a long time since Jeremy or I have been a part of that type of gathering. The men of TKE at Iowa State were there and we were able to connect with them and take some pictures. It was such an honor to be able to represent the families of St Jude and also give back in some small way to the place that has done amazing things for our family. We only hope that opportunities such as this will continue to be presented to us so we can help even more.

We start our new rehab this week and we are really excited. We decided since she seemed to have so much energy it was about time we got a little more aggressive with her walking progress. We will be taking her to a rehab center 2-3 times a week where they will work with her for an hour on strength building and walking exercises. Her new glasses arrived this week - still blue and round, but a little larger and a better fit for her growing face.

We were able to go to church today, which was great for all of us. We miss not being able to go when her counts are down and were happy that we were able to attend this week even though we won't be able to for the next few. Avery struggles in the kid room a bit -- wants to be held and whines a bit. It's been a long time since she was in a daycare setting and I think she has some anxiety about it now. We'll keep working on that one though because sharing toys and socializing is huge in a 2 year olds development - and boy we don't need that problem on top of all the others we have!

Jersey is finally back home today and we sure missed her for the last 2 weeks. It's amazing how much Avery loves that dog. Poor Jersey just wanted to cuddle up and sleep and Avery has been chasing her around all day. Just now I found chocolate in her hair...evidence of that the Cookie Monster managed to capture her at some point.

We will be on lockdown this week as she drops and tries to climb back up in counts. She hasn't had any transfusions this round as of yet, but we'll surely see at least one of each by the end of the week. Both Jeremy and I are back at work this week so Miss Sharon will be here playing with Avery, which just tickles them both.

We scheduled our Port placement for the 23rd of the month and will be admitted immediately following the surgery for her 6th and final round of the ICE Chemo regimen. After 3 weeks of recovery time we will then return to St Jude for more tests and to discuss our options moving forward. Our trip to St Jude is scheduled for the week of March 21.

Well we hope everyone enjoyed the game and the more importantly the commercials...Jeremy ordered some wings and plopped himself in his chair....as did Avery in hers. It's amazing how much like him she is...well minus the love of dolls, clothes, and books. Course now that I say that he is helping her put the dress back on the doll - scratch the doll.

Jenn

Blizzard of 2011

2011-02-02T11:50:00.002-06:00

As the City prepared to shut down yesterday...Jeremy and I were packing up the car for round 5 of the ICE chemo. I can honestly say I was excited to be going in patient for the first time. What better place to be than in a hospital surrounded by medical personnel, a cafeteria with warm food, and lots of back up generators. I mean really -- we were in the best place possible.

Chemo yesterday and today were uneventful. Like a champ she powers through them and continues to play. Right now she is working hard on typing on the other computer like Mommy, who has been working as much as possible from the hospital room. We are back in one of the Bone Marrow Transplant rooms on 4 henson and it is extremely quiet back here. These are rooms used solely for those kiddos whose immune systems are even more fragile after chemo and they keep them isolated as much as possible. This is completely out of my comfort zone as I like the hustle and bustle and talking to other parents. Jeremy however, is in heaven. Ok, well maybe not heaven, but he likes it quiet.

I sure hope everyone is safe and warm today -- make sure you pack an emergency kit if have to travel - I'm sure the towing services are backed up big time and you'll be in for a wait if you need it! Luckily we have fostered out the dogs again and don't have to worry about them. Digging a path for Jersey to go potty on would have been really annoying to Jeremy after he shovels our driveway and the neighbors (they live in AZ). Drive Safe!!

Jenn

ALL CLEAR

2011-01-29T15:01:00.002-06:00

Avery's MRI and Lumbar Puncture was done yesterday about 4 pm. Shortly after she woke up, we hit the road bound for Kansas City. Results are typically not given until the following day, or in this case Monday, but because of the roller coaster we've been on these last 4 months the Dr was able to con the radiologist into reading them last night. Avery did great through both procedures and was happy as could be after she woke up. She was not happy though as we put her into the car seat for the long ride home. She did fine on the way home, taking a good nap, eating some McD's and watching some movies. She stayed up with us until we got to Kansas City and was pretty much done 30 mins before we got home.

Dr Armstrong called us around 6:30 with the results of the MRI and LP and both were clear. There is a new spot showing up at the base of the brain stem that the radiologist thinks is due to her radiation, however he will take a look on Monday and double check. Neither is worried about this spot and said it is to be expected after radiation. This is phenomenal news and as a result has got the team brainstorming our next step. This is unchartered territory for the Dr's as recurring on treatment is rare and never a good sign. Responding to the ICE chemo as well as she has, appears to be unexpected and has given the Dr's hope that we have another shot at this thing. Avery has 2 more ICE chemo rounds to complete - number 5 starts on Tuesday. After these 2 rounds, we will head back to St Jude to talk further with the Brain Tumor team about Avery's next course of treatment. The hope is that since she seems to be responding so well to this chemo, we can couple it with another regimen that might push the cancer into remission. If we can get this beast into remission, it opens a whole new possibility for her in the future if it returns - full radiation. At this point, Avery is not old enough for this option even though we know its the one proven option for kicking the cancer. Doing so now, would be so detrimental to her development that Dr's won't consider it. Doing so after she turns 3, lessens those chances of developmental issues.

It was a really great visit with our team at St Jude and we felt so much more hope from them after our visit. They have always been very honest with us and told us in the beginning that they would tell us when they thought it was time. I think they thought after October's visit, that that time might be coming. However, Avery has entirely different plans for all of us. It was fantastic to see them recognize her amazingness and jump on our bandwagon again. The goal is always to heal her with the best quality of life possible and without St Jude we may not have been as good at achieving that for her.

I will be returning to work on a reduced schedule starting Monday. I have huge anxiety about this, but at the same time know it will help to steady me a bit on this roller coaster. Sharon will be helping us with Avery 2 days a week and that gives us a huge sense of relief as she has been so good for Avery. We are also adding some more aggressive therapy to her week since the kid seems to have the energy of a typical 2 year old. Our hope is that she will learn to walk in the next few months and gain some true independence. We have new braces for her ankles coming that will come up a bit higher and help with her knee hyper extension. We also now have an FM system for her hearing aides that will help her focus on whomever is talking to her, especially in that group setting. We are very excited about this and hope it aides in her speech and language development. Avery has adjusted to the missing teeth so far, although she does tend to drool a little more than normal. She'll figure it out I'm sure. New glasses will be arriving in the next few weeks as well -- her current ones are a bit small for her face. No worries people, we ordered the same color in the bigger frames so the adorable blue-eyed beauty with her twinkling blue frames and toothless smile will be waiting to see you all.

Thank you to all for the prayers and support through this rather rough week. We certainly have had it worse by far, but this one was not as easy as we had expected. It can always be worse - right? I met a father this week who was there with his wife and 2 children, both of whom have bone cancer. Yes - I said both. When you hit the jackpot -- you really hit it huh? Sad part is, both these strong kids have had their legs amputated, but one of them also had a benign cyst in his brain as a baby and open heart surgery as a toddler. You want to talk about things that suck? Try that one on for size. Puts a little more perspective into your day huh?

An update on our buddy Quentin -- he had his stem cells harvested yesterday - 5 days ahead of schedule, and he rocked it! We are so proud of him! Stem cells are harvested out of the big vein in your neck - so you can imagine how horrifying this was to witness for his parents. He did great though and they are very excited that his body was ready early for the harvest - means things are working well!

Well, Avery and I have a date with some very cool birthday presents, so we must say goodbye for now. Love to you all -- the prayers are working!

Jenn

MRI UPDATE...just moved to recovery...haven't seen her yet.

2011-01-28T15:33:00.000-06:00

Thursday

2011-01-27T17:06:00.002-06:00

Today was a much better day for Avery. She seemed to have broken her fever about 3:30 this morning, however it is creeping back up again now. She had her hearing test this morning and they said she has not had any increase in her hearing loss. This is a great relief since we are still 2 rounds from being done with this chemo. We finally got a bm out of her this afternoon which was great as they were threatening an enema.

Avery was her happy self a majority of the day. Its really strange for us to see her in a bad mood, especially one that lasts longer than a nap could fix. It was a huge relief to see her smiling and playing and happy today. We are hoping things stay that way, although her fever seems to be coming back tonight.

Jenn

Wednesday

2011-01-26T19:16:00.002-06:00

Today wasn't much better...Avery had a low grade fever throughout the night and woke up with it this morning. We had labs and 7 am and then went back for her surgery prep. After talking to the Dr's and taking cultures for labs the surgeon decided he wasn't comfortable doing the surgery. So after some more messing around, some antibiotics, and getting hooked up to fluids we called it a day. She is exhausted and spent the rest of the afternoon sleeping...and is sleeping still now. On top of having the fever, she is constipated from her pain meds and has some congestion. Good news is her mouth seems to be feeling a little better. The Dentist said things look good in there so we should be ok moving forward with her toothless smile....although we have yet to see that smile.

At this point we are continuing to monitor the fever and have given her another dose of Tylenol to help with that. Since she is not Neutropenic, we are not required to go inpatient with a fever so we just need to keep a close eye on her. Needless to say we aren't sleeping very well with that worry on our hands. Hopefully she will kick this thing tonight and be back to her feisty self in the morning. Tomorrow we have rescheduled her hearing test which requires sedation - we are hoping that will still be done as the chemo she is on has a high probability of causing further hearing loss and we'd like to stay on top of that. Friday is still the MRI - 11:45 am start time and 4 pm finish time. We are hoping to get preliminary results prior to leaving, but we will see if that happens. Friday afternoons in a hospital....

Thanks for the continued prayers this week -- it's definitely turning into a much more stressful week than we had anticipated.

Jeremy & Jenn

Avery's Worst Day

2011-01-25T15:05:00.002-06:00

Well I think we have officially named today Avery's worst day ever. Who would of thought that pulling teeth was worse than brain surgery, radiation or chemotherapy? She has been in pain a majority of the day and we've done our best to try to distract her, but to no avail. It didn't help when the eye dr dilated her eyes and that we had back to back to back appointments. Finally Jeremy called it quits and took her back to Grizzly house for a much needed nap. I attended her last 2 appointments alone pushing an empty red race car and hauling all her supplies around with me. This of course is the day that there are tons of tours going on in the hospital and I got a lot of strange looks as tour groups opened doors and moved over for me and the empty red race car!

Avery's right eye has gotten a tiny bit worse so we are going to go pick out a new pair of glasses....hard to say what color we might go with this time! We also are getting new leg braces for her that will come up a tiny bit higher to help with her knee hyper extension. And lastly, we'll be starting to use an FM transmitter with her hearing aides so that she can focus solely on a specific voice regardless of her surroundings. This will require the person with her to wear a small device around their neck. We are hoping this will help her focus on the right things, especially when in a group setting.

We are excited that we were able to see our friend Belle and her mom and Aunt Jen this week. Luckily they are only here until tomorrow, so their check up was short and sweet. Belle is doing really well and growing like a weed. For those of you that like the Chili's Restaurant chain - check out the kids menu sometime - Belle is on the menu for St Jude! We are also hoping to see Rachel and Rachelle this week when they get here. Rachel is 4 and has Medulloblastoma like Avery. It has been so great to see all of the Dr's, Nurses, and Therapists here at St Jude. It feels like home being here with them and Jeremy and I seem to be so much more relaxed surrounded by the amazingness that is this place. Tomorrow we have big plans to have her Hickman catheter removed and replace it with a Port. A Port will be placed under the skin on her chest and will require a needle poke to be accessed, but will allow Avery to do some of the things she hasn't done in the last year...go swimming and take a bath. We are very excited about this and can't wait to let her splash all she wants in the tub and take swimming lessons! This is a minor outpatient surgery and has a small recovery time. Friday will be our MRI and Lumbar Puncture, but not till noon so we won't have results until late that afternoon, if at all that day.

Hoping that Cy and Jersey Anne are behaving themselves this week - thanks to Dan & Harper for taking care of them for us!

Jenn & Jeremy

Day 1 - St Jude

2011-01-24T12:52:00.002-06:00

Well Day One wasn't as easy as we had thought it would be. Avery went in at 7:30 this am for Dental Surgery to get her front teeth fixed (cavities). Instead, the dental surgeon called us after getting in there and told us he was going to have to pull at least 4 of the teeth - 2 top and 2 bottom as her jaw was not sitting right due to the way the teeth had grown in. This was concerning and could lead to huge issues with her jaw down the road. Since the teeth were decayed anyway, he decided taking them was the best course of action for the future. After taking the 4, the jaw still wasn't resting correctly so he had to take 2 more on the bottom. All in all she had 6 teeth removed and 4 crowns put on the back molars.

How in the world did it get so bad? That is what we keep asking ourselves. I know she eats a lot of sweets but we brush her teeth at least twice a day. I can't imagine any of you others are doing any different...if even that. The old people milk she drinks doesn't help, but that is how we keep weight on her so she can fight this monster. It's a lose lose situation for us and one we really can't do much about. But needless to say - we feel like we have failed her. In the long run, this will help her jaw and bite and when she hits 5 she will start to regrow her adult teeth so this isn't permanent. Still, it's one more thing to add to her long list of "this sucks".

Our drive to Memphis was uneventful. We arrived about 7:15pm last night and went right to the hospital for labs. It felt great to walk in to smiles and "how are you guys?!" coming from the nurses and staff that we hadn't seen since October. Just one more reassurance that we are in the right place to make our baby better. The highlight of the drive was a chip in my brand new windshield (literally we replaced this last Monday) and a stop in Po Dunk AR for McDonalds... Tomorrow we have a long day of rehab check ups, labs, an eye appt and meeting with our NeuroOncology team. We are hoping she will be feeling just a little bit better by then so she can WOW her therapists with her talking, strength and all around amazingness. Right now she has crashed for the afternoon - gotta love those pain meds.

Jenn

Avery's Big Bash!

2011-01-22T15:29:00.002-06:00

Avery's 2nd Birthday Party was a huge success! Thank you to everyone for making her day so special! She had all her friends there to play with her and there was lots of fun to be had! We couldn't have pictured a more perfect day for her. Thank you everyone for coming out and to those that drove from IA and MN to be with her! We sure hope all the kids had just as much fun as she did!

The Christiansen's

HAPPY 2nd BIRTHDAY MUNCHKAOODLES!

2011-01-21T20:56:00.003-06:00

Avery officially turns 2 years old in the next 30 mins....needless to say we are elated. It's been a great day for all of us and we are so happy to be at home celebrating her birthday. Last year we made a desperate attempt to celebrate her 1st birthday at St Jude -- with the 3 of us and a defunct cupcake we bought at the cafeteria. Needless to say it was not memorable, nor worthy of what this little girl deserves. This year we are bound and determined to make up for it. That means the best cake, the best balloons, the best outfit, the best presents and most importantly the best friends. Avery's Superhero Birthday Party is tomorrow afternoon and it will be a wild and crazy 2 hours filled with lots of sugar and running toddlers. We are all pumped!

Today we took Avery in for an evaluation at a Rehab Clinic in Kansas City. We have been working with the county the last 6 months and they have done a good job but we felt like Avery needs more aggressive therapy if we want to help her walk. So starting when we return from St Jude, she will be going to Therapy 3 times a week. We are really excited as her energy levels have been so great the last few months and she has showed some great progession in wanting to walk. We then ended the day with a trip to Fritze's Train Restaurant where the food is literally delivered by a toy train and gourmet cupcakes worth about 1000 calories a piece. She loved it all.

We attempted snow and sledding today....no go for both again. She was furious at Dad for the sledding encounter and not happy when snow sprayed in her face. I think she's more of a beach gal...and who can really blame her? We head out Sunday morning for our trip to Memphis. It feels good to be going back to St Jude -- we feel very comfortable there and really miss that secure feeling they provide us. We have asked to have her Hickman Line taken out and replaced with a port, which is under the skin. We'll see what they say. A port allows Avery to do some things that she can't with the Hickman like swim, take a bath, get wet in general...oh and the last 2 weeks she has shown an increased interest in the Hickman, which means we find her ripping the tape off the line whenever she is left alone for more than 30 seconds. This is an issue obviously -- I literally caught her red-handed, peeling the tape off her line during a nap the other day. And this girl doesn't make a peep when she wakes up so she could be in there for hours playing with it while we think she is sleeping - yep needs to go. We'll see if the doctors agree. She will also get all of her 5-7 cavities filled next week....yes I said 5-7 -- and yes some of those teeth have only been up for a few months. Don't even get me started. They have us set up for a Auditory Brain Scan which will check her hearing again, as well as a behavioral test to see how smart she is. We've already decided we are ok with an Average child - so no worries that radiation made her dumb. We figure she was brilliant to start with and is now average - so she'll fit in more...well except for that hair thing. We have to get her some hair. Poor lady at the rehab place decided Avery was a boys name and she looked like a boy so she referred to her as a He/Him all day. Yes she was wearing pink - that doesn't seem to matter to people though.

Thanks to all the well wishers on safe travels. We are bound and determined to have a much better trip to St Jude than the one in October. And this time she loves the DVD movie machine so Mommy and Daddy will have a much better drive as well!

Jenn

Our Fighter - Our Hero

2011-01-17T20:38:00.001-06:00

Avery Fall 2010

2011-01-16T00:38:00.000-06:00

Elmo Live

2011-01-15T23:45:00.002-06:00

We took Avery to see the Elmo Live show at the Sprint Center and let me tell you she absolutely loved it. While she refused to sit on anyone's lap or even in her chair -- she was totally content to stand up and bounce. She loved watching all the kids around us and she loved the music. She and her buddy Harper had so much fun. We have been trying to teach her to jump and so we make her bend her knees and crouch down and then we say jump and lift her up. She doesn't quite get the actual jumping part but she thinks its fun. So today she spent the whole time bouncing up and down in front of us, mimicking that process. She was furious when we attempted to pick her up and wanted nothing to do with Jeremy or I. It was great.

We took Avery out into the snow yesterday -- she hated it of course. She refuses to actually wear her mittens, although she will spend 20 minutes putting them on and pulling them off. We let her ride her Barbie 4 wheeler again, which of course meant daddy taped the button down and we coaxed Jersey into running ahead of her so she would chase her. It's amazing how much she loves that dog -- especially when the dog really doesn't care much for her. I think she would spend all day chasing her if we let her. I was yelling at Jersey to stop her barking yesterday and I swear - plain as day, Avery shouts out "Jersey Stop!" Then she points her finger at her and scolds her. Seriously.

Nana comes tomorrow and Avery is pumped. While we were in MN we discovered a new favorite....Nana. I picked her up after she crashed and burned on her push toy and she promptly refused me and nose dived for Nana. Are you freaking kidding me? Nana spoils her of course and she has figured out the pros of that situation - not that I can blame her. She will spend the week with us and then be here for the big party on Saturday.

A fantastic thing happened yesterday and I wanted to share it with all of you. Our friends from St Jude -- the Parkers, more specifically Megan, got the best news ever! NED - NO EVIDENCE of DISEASE on her MRI. Megan just finished the chemo regimen that both her and Avery were on until we had our recurrence in October. She is officially done with treatment and all signs are good for cancer free. She is a little fighter and still has some set backs to overcome, but that nasty cancer in her head is gone!!! We couldn't be more happy for them and wanted you all to include them in your prayers this week as they have been on this long road with us. They have been a huge help to Jeremy and I in terms of coping and we are very lucky to have met them.

A huge thank you also goes out to the ladies on Team Lucy. These wonderful women decided to put together a ton of meals for not only us, but 2 other families dealing with sick kiddos. These ladies took a night away from their families to put these together and it means so much. The generosity that shows up in situations like this is so amazing not only to receive but also to see. Lucy's mom told me the one thing she was afraid was going to happen without Lucy here with us was that all this amazing generosity and caring for people would stop. I think it's safe to say that this ugly fight simply wakes most of us up to what should have been doing all along. Jeremy and I will forever be a Partner in Hope for St Jude, as well as active in benefits, crisis coping, friends in need, and other families experiencing this horrendous path. I think this was a huge eye opener for us as to what we were missing out on by not being a part of this amazingness. Someday we won't need to be the receivers of so much support....and when that day comes, we plan on being the best supporters of others we can. We've seen first hand what a simple note from someone I don't know can do...a meal, a book, a prayer, an email, a necklace, a care package, a date night, groceries, a hug. When family supports you - well lets be honest -- you expect it. When a friend of a friend, a neighbor you've barely met, someone's sister you don't know, a co-worker from another state, a random person on the other side of the country sends you a message, a card, a donation, a picture of them in Team Avery gear, a story, a website, a whatever -- well it just shocks you. How could our family make them stop their busy lives to do something for us .....that right there people is what makes us human. And that is what Lucy's mom was talking about. So thank you ladies of Team Lucy....

Well, It's late and I have a lot of Birthday Party work to work on in the morning... I will post some pictures of the last few weeks soon...

Jenn

Back from the Frozen Tundra

2011-01-12T20:04:00.002-06:00

Avery and I finally made it back from the Frozen Tundra today. Just in time for a stop at the clinic for some platelets and boy did she need those. Bruising up worse than a 2 week old apple, it was a much needed refill for her as her platelet count was at 8. (desirable levels range in the 200-400 ballpark) We spent the night in Des Moines as the roads weren't the best yesterday. Nice thing was we got to see all our Iowa girls and that was some much needed girl time.

The weekend at Nana's was a cold one and I started to remember why we love Kansas City. Have you ever stood outside for a funeral in below zero temperatures while it snows on you? It's ridiculous. The services were nice and it was great to see the Zeglin side of my family. We haven't been to Minnesota since Avery was diagnosed. Although she wasn't able to see everyone (low counts) it was good that she saw some of our family and friends. We hope to make it back up there after all her chemo rounds are completed this spring so that we can see all our amazing supporters. Although we may wait till all that snow finally melts. They have over 30 inches on the ground - OMG.

The rest of this week will be pretty low key. Avery is in a great mood and seems to be full of energy so we'll be harnessing that as much as we can into some physical therapy and lots of walking. Although we'll be stuck inside with the walker, we may be able to gain some miles in daddy's man cave.... I also have a lot of sewing to do for Avery's Party which is less than 2 weeks away. So hard to believe she is almost 2 years old. We are also anticipating the arrival of Nana again, although we had our weekend fix so we won't be so on edge waiting for her to arrive. On Saturday we have big plans to go see Elmo Live! Our buddy Harper is coming too and we can't wait. However Mommy didn't consider the fact that Avery has no idea who Elmo is, so thanks to Nana, we have some reading/dvd's/toys to be studying this week. That way when Saturday arrives we will definitely think Elmo Live is awesome.

Jeremy says the benefit for Quinten on Sunday was great! Thanks to all of you that made it out there to support them. Quinten starts his 2nd round of chemo this week, so please keep the Dopsons in your prayers again. Q's hair started to fall out so now him and Avery are baldies together!

I sure hope everyone had a great couple of snow days -- I know how much snow puts a rut in the flow of things here in KC. I am however, happy we have some finally so we can make some use out of the Carharts that Uncle Jason got Avery. Tomorrow we plan to bundle her up and toss her in it - see what she thinks. I've been telling her for the last 3 days that the snow is kinda like sand only cold...if you remember she wasn't a big fan of sand the first couple of times we went to the beach. We'll see what kind of reaction the snow gets tomorrow!

Jenn

New Year - New Passing

2011-01-04T20:19:00.004-06:00

It's amazing what a year can do....the bottom picture is Avery shortly after having her brain surgery on New Year's Eve 2009. The top picture was taken on Christmas Day 2010. Our baby is no longer a baby...

As much as we were hoping for a 2011 filled with terrific news and fabulous memories, I am sad to say that we are not starting out that way. This morning my Grandfather Zeglin passed. He had fallen into the darkness of dementia, so in a way I suppose this was a blessing for him. But to those that are left behind it is always the hardest. He was Father to 6 children, Grandfather to almost a dozen grandchildren and Great Grandfather to 3 - one of which is Miss Avery. He will be missed by many.

That makes the count now 3 - we have lost 3 grandparents between us in the last 12 months. I am pretty sure Jeremy and I are at our max. Our hope is that once again God has recruited the help of our beloved grandparents to watch over Avery and us as we continue down this rough road. Team Avery in Heaven has quite the numbers now and there is no way to argue with that.

Services will most likely be on Monday, which will require me to travel to the frozen Tundra for the weekend. Obviously not my choice of time to go up to Minnesota. First off, it's colder than crap up there right now, not to mention the FEET of snow they have. I mean really -- no one likes 30 inches of snow except 10 year olds in snowpants....and even then unless you have plastic bags to put inside your boots, tucked into your long undies under the 3 layers of clothes you have on under your snowpants...I mean don't even try to go outside...and yes I know how to drive a snowblower. I mean how is Jersey Anne going to go to the bathroom? 2nd, Avery is neutropenic which means counts are 0 and a fever means the hospital. Oh and did I mention she is teething? Seriously.

Avery has been in great spirits the last few days although she has discovered the art of tantrum throwing and whining. She has made some definite decisions about what she does and does not want to do and if you attempt otherwise - WATCHOUT! She has been working really hard on walking and bending her knees and moving around the house. She has also learned how to give bear hugs -- with sound affects and all. It's hysterical to watch and even better to get one. We have been busy planning her 2nd birthday party. This will be a full-on kid event with adults as observers only. We are very excited to let her for once just be a kid....although same rules apply in terms of hand washing and being sick...

We managed to get the Christmas decorations down and put away - which was nice. Last year Nana and GJ had to do it all - which made for fun this year when I went to pull them out again. Avery was a great helper and had just as much fun taking them down as she did putting them up. I can only hope that continues every year! Jeremy went back to work today after being home with us the last 2 weeks. I think it was just as hard on him as it was on us. It had been a nice 2 weeks having him here all day with us. Luckily we won't be going back in patient until the beginning of February so we will have some time to recoup and really get her counts back up.

As we won't be here on Sunday to attend a benefit for our friend Quinten, I'd like to share the info with everyone. The benefit is at Llywelyns Pub at 6995 151st st. in OP. 15% of all food proceeds and all bar tips will be going to the family. They will have a silent auction and the band "Goverment Cheese" will be playing from 8-10pm. The benefit starts at 6pm so if you don't have any plans for dinner and would like to stop in, please do so. Remember part of the nights sales will go to benefit this family so a simple night of eating out could really help. Quinten and his parents are just beginning this journey and could use all the support they could get. To read more about Quinten's Battle check out www.quintenscrusaders.blogspot.com or go to his Caring Bridge site - Quinten Dopson.

Happy New Year everyone!

Jenn

Discharged Early

2010-12-30T22:33:00.002-06:00

Avery's Chemo round went well. She did great like always -- no puking and seemed to feel good through out the week. She was low in red blood counts yesterday so they transfused and that picked her energy right back up! She will get her G shot tomorrow and then we'll have a nice weekend at home with just the 3 of us.

We had some fun visitors again and that helps pass the time for both Avery and us. We were also able to hammer out a theme for Avery's 2nd Birthday Party that is right around the corner. That being decided, Aunt Angie and I then spent the next 2 days cutting and sewing our hearts out for the party. Great ideas usually mean a lot of work. Totally worth it though as never has a 2 year old more deserved an awesome birthday.

We sure hope everyone had an absolutely memorable Christmas with their family and friends. Ours was wonderful and spread out over the month of December so it didn't seem to come and go so quickly. As soon as we got Avery home today, Jeremy put together her new Barbie 4 Wheeler and we took her out in the 60 degree sunshine to test it out. She LOVED it! And she even wore her "don't fall down" helmet without complaint.

This week was a plus as Avery learned how to go potty on the potty. With them pumping as much fluid into as possible, it was easy to get her to pee on the new chair. She even managed a #2! Needless to say, like every other parent out there - we were super excited and shared our news with whomever would listen. Why we are so fascinated by this -- I am not sure, but all parents agree this topic is uber exciting when their little one starts to comprehend.

As we come to a close on this ridiculous year, I've started to think about all the amazing things that have happened in the last 365 days. While some memories are devastating for us, there are others that Jeremy and I will be eternally grateful for. The chance to meet some of the most amazing children and families....not to mention working side by side with amazing medical staff. The opportunity to see the St Jude team in action, to partake in their research, to help other children 5-10-25 years down the road...to watch our self reliant family become utterly dependent on our loved ones around us and then to see that this is ok -- as all those loved ones stepped up to the plate. To see my daughter start at ground zero and work so hard to get back on track. To see her light up as we sing a song or tickle her tummy or chase her around the floor...to become a member of a group (cancer parents) that no one ever wants to join, but that they will always be connected to....to finally take the time to appreciate the day -- crappy as it may be, it could always be worse and until you experience worse - you don't get it. To follow the motto "don't take life for granted" and truly and fully understand what that means.

We once again thank all of you for your love and support the last 365 days -- by no means has it been easy, and it will not get an easier so we appreciate all of you stepping up when we needed you most and having the stamina to keep going with us. Here's to a way better 2011...and to the strongest person we have ever met - Avery.

Jenn & Jeremy

Merry Christmas

2010-12-24T16:17:00.002-06:00

As the holidays approached we found ourselves wrapped up in the magic of the season. A great feeling by far, but in the back of our minds the words "she probably won't make it to Christmas without some sort of treatment" creep in from time to time. As sad as this makes us to hear and as much as we love our St Jude Dr's....when tomorrow morning rolls around and our little fighter wakes up in her red feety pajamas, raring to open her gifts....we will be giddy ourselves. And even though we know they know their stuff....a big fat "I told you so" will be issued from this end at all the dr's - (under our breaths of course as you don't want to tick them off, kinda like you never want to tick off the McDonalds drive through attendant for fear they might spit in your food.) Avery is a fighter and with a team like ours, how could she lose?

Strong and feisty, and enjoying every last present she has been given, Avery is doing great. We will spend the week at CMH getting the 4th round of chemo next week. A slow week at the hospital as I am sure half the staff will be out on vacation, but we hope it flies by with all her new toys to keep her busy. Daddy is off of work this week as well, so we'll have both of us tag teaming the toys and learning. Our biggest hope is that her appetite continues as it has been for the last week or so. She can unwrap a hershey's kiss faster than me -- and let me tell you that is some good work on her fine motor skills!

As this weekend passes us I hope everyone has the chance to stop and really enjoy their family and friends. We've been blessed with a huge eye-opening experience this year that has for the last 12 months pushed the strength of these relationships right in our faces. We are in awe every day of the love and generosity that surrounds us. And we are so thankful for every morning that we wake up and get to see those blue eyes and crooked smile while she embraces us in her big hugs. After a year of walking this road our words of wisdom to you are these... "Don't take life for granted, because tomorrow isn't promised to any one of us." Kirby Puckett

Merry Christmas to you and yours from us.....

Jenn, Jeremy & Avery

Weekend with Grandma & Uncle Jason

2010-12-19T20:39:00.003-06:00

We had a fantastic weekend with Uncle Jason and Grandma! Lots of snuggles and lots of playing, especially with her new dollhouse. I swear she spent the whole night playing with the house and woke up this morning for more!

Her appetite appears to be increasing and we are crossing our fingers for a 9.8 kilo result this week. She has been clocking in at 9.6 kilos for the last few weeks, which has been good, but we are hoping to see a bit of an improvement. For those of you not submerged in the hospital world....2.2 lbs per kilo puts her at 21.12 lbs. A good weight for her right now is probably closer to 24-26 lbs but we'll take whatever we can get! She's always been in the lower percentage for her weight, but never quite this low of course. She is sitting at 32 inches in height and has the longest toes and fingers you've ever seen.

Speaking of toes...our smarty pants was playing quietly this afternoon on the floor watching football with daddy. He heard her giggling to herself and after a few minutes decided he better peek around the ottoman and see exactly what she was doing. Of course she was coloring her feet blue with her new markers....I mean, who doesn't do that? I didn't figure this out though until I went to get her up from her nap and realized her feet were entirely blue. Thank heavens they are washable!

Tomorrow we have a busy day of snack making for our team at Mommy's work. The end of the year is a very busy time in the payroll world and I attempt to make up for it by bribing my team with food. If I feed them, that means they only have to get up from their desks to pee....Just kidding guys : ) ok, kind of kidding. He He He Avery are attempting, but not promising, some punkin bread and chex mix. Again, don't get your hopes up.

Thank you to all that have been so sweet to us this Christmas. Avery has discovered that she loves to open presents. So each night she randomly wanders into the living room and selects a present to rip open. We of course don't realize it until it is too late and by then you can't not let her finish opening the gift. She has of course loved all of her presents, even the noisy ones that Mom and Dad aren't so fond of. So thank you to everyone for making this Christmas a special one for her.

Our next round of Chemo is next week. We are attempting to go in the day after Christmas so we can be out by New Years, but not sure how that will work out. We then have appointments on January 10th at St Jude. We are anxious to get back to our comfort zone and to see the dr's and nurses we have missed. We are also excited to see our friends, the Parkers. Avery's counts are on the way up again and she seems to be feeling great. We've kicked the colds and runny noses and are excessively adamant about the hand washing now. My house is a disaster in terms of toys all over the place, but you better believe they have been wiped down with Clorox bleach wipes!

Jenn

Christmas with Nana, GJ, Uncle Rob & Amy

2010-12-15T21:35:00.003-06:00

We had a great weekend with the family in from Minnesota. The four of them drove down Friday night and avoided the 17 inches of snow that fell back home...and of course brought the cold weather with them. No worries here though as we spent the weekend indoors!

Avery has greatly improved present unwrapping skills and she demonstrated them early by opening 2 of Grandpa Christiansen's presents while we were eating. Luckily she has an enormous amount of presents under the tree so we got her started on opening some of her own. Her last presents were the best ones of course and they included a Kitchen from Nana and a very cool wagon from Uncle Rob and Aunt Amy. She has since spent countless hours making coffee, putting food away, and flipping eggs and waffles!

Her counts are on the way up it appears -- still close to 0 but at least rebounding. Her platelets were low on Monday so we were transfused. My guess is she will need them again on Friday, but I think we are good on her hemoglobin. Her energy level is up and we are really enjoying the rambunctiousness of an almost 2 year old.

We'll be spending this weekend with Grandma Lippold and Uncle Jason and celebrating Christmas with them. More presents for the most deserving little rockstar! Then Grandpa Christiansen will be coming down for Christmas.

The next Chemo session is scheduled for the week in between Christmas and New Years. We'll be spending New Years at CMH -- good thing your social life revolves around early bedtimes and sing along songs once you have kids. We are excited to be able to spend it with our friend Quinten and his parents at least!

Jenn

New Time for the KFKF Interview 94.1

2010-12-10T14:19:00.001-06:00

The interview was postponed last night to today. We will be talking with KFKF around 3 and they should air it sometime after that -- around 3:30-5:00pm. Tune in!

Radio Station Interview Today! 5-6pm

2010-12-09T14:43:00.002-06:00

Kansas City Radio station 94.1 - KFKF is having their annual St Jude Telethon today. They have asked us to be on the show between 5-6 pm tonight while you all are on your way home from work. So if you tune in to 94.1 at 5 pm, hopefully you'll hear about our little Miss Avery, spoken by her mom & dad!

Right now is of course a huge time of year for many charities, including St Jude. Their annual "Thanks & Giving" campaign is going on now. You'll notice the St Jude symbol popping up in a lot of places as you are out shopping this year. One of the corporations that gives a lot to St Jude is Ann Taylor -- any of their stores are part of the campaign and will be asking for donations. Keep your eyes peeled for that well known silhouette symbol. Target is of course a huge supporter among a lot of others....Miller/Coors, The Fox & The Hound, Kay Jewelers, Chilis, Dicks Sporting Goods, CVS, Gymboree, The Melting Pot, Brooks Brothers, Auto Zone, Kmart, Williams-Sonoma, Dominos, New York & Company, Dollar General, Casey's General Stores, Fox Sports, Cinemark....just to name a few. I told Jeremy we may have to switch beers. You all are lucky enough to have seen where this money goes -- seen it put to use, watched a family be so grateful to not have to worry about food, rent, medicine, and hospital bills.

On the home front things are going well....I attempted to bake cookies today...we all know how that turned out. Mostly I just made a mess and got to wear my apron. Avery helped and is full of giggles and squeals. I didn't realize how much we hadn't heard those until the last few days when she just seems to be full of them!

We have another request of you all...more prayers -- for a new family. While waiting for our discharge orders on Monday I was informed that a friend of ours had just heard those devestating words that we heard last December....your baby has a tumor. As I waited for these friends to arrive at CMH downtown I tried to remember what the most comforting words were for us last year. I couldn't think of any. So instead as they walked towards me I put on the bravest face I could and squeezed her for all I was worth. Their son Quentin is 15 months old and has a tumor in his abdomen. Last night the surgeons removed it. They are now waiting for the pathology report and will start making the decisions about his care. Please add them to your prayers -- they are at the very beginning of a long road and can use all the help we can muster. In the mean time, we have offered the best thing we can -- our expertise in this journey. But like us, Quentin's mom and dad are strong parents and they will face this monster -- like we have, head on and with all gloves on.

Jenn

Santa was a bust!

2010-12-07T20:20:00.004-06:00

Good news is she had a blast with all the other stuff they had at Bass Pro Shops and I don't think we have seen her this giggly in months...

Bad News is that she was not a fan of sitting on Santa's lap -- AT ALL. We all got a good chuckle, but man -- who doesn't like Santa?

Round 3 - ICE

2010-12-04T21:31:00.002-06:00

Avery has completed day 3 of this round and so far so good. She handles this chemo extremely well and we've had no puking. We did discover however that she has a little bit of an ear infection so they have put her on the Amoxocillan. Good news is that this doesn't stop us from going home unless we spike a fever. So far - no fevers.

We had lots of visitors today which always keeps us to entertained. We are of course in isolation, so attempting to humor a toddler in a room all day becomes a difficult task and I appreciate the help, especially when it comes from other 2 year olds!

Nana was a huge help today in teaching us naughty things. She first showed Avery how to put her balls on top of the crib isolet and hit them in the air like popcorn. She hooted and howled hysterically over this game -- so much we had to record it. Then after that she taught her to sit on her IV pole and ride around and they taught her to stand on it while she was pushed. Needless to say she threw a fit when Nana decided she was done and Avery apparently was not. Good one Nana -- that will never cause a problem for us!

Mom goes back to MN -- and 10 inches of new fallen snow tomorrow. We are sad to see her go but lucky for us she will be back with the troops next weekend. We are celebrating Christmas with my family next weekend and will have a packed house. Looking forward to watching her open gifts and play with all her new toys. It's hard to believe that we started this long journey almost a year ago. Somedays it feels like yesterday we were waiting for them to finish her brain surgery....other days it feels like we've been at it for years. Luckily we have all of you to help us move forward and to continue with this fight.

Jenn