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Thursday, December 30, 2010

Discharged Early

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 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 become a member of a group (cancer parents) that no one ever wants to join, but that they will always be connected 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

Friday, December 24, 2010

Merry Christmas

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

Sunday, December 19, 2010

Weekend with Grandma & Uncle Jason

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!


Wednesday, December 15, 2010

Christmas with Nana, GJ, Uncle Rob & Amy

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!


Friday, December 10, 2010

New Time for the KFKF Interview 94.1

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!

Thursday, December 9, 2010

Radio Station Interview Today! 5-6pm

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.


Tuesday, December 7, 2010

Santa was a bust!

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?

Saturday, December 4, 2010

Round 3 - ICE

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.


Wednesday, December 1, 2010

Lumbar Puncture - MRI Results

No Evidence of Cancer Cells in Spinal Fluid

MRI was clear -- no new tumor growth in her spine or her brain.

Lumbar Puncture revealed no cancer cells in her spinal fluid.

This means the ICE chemo is working! We are so relieved! This also means we can keep fighting this ugly monster - and that is the plan. She gets admitted tomorrow for round 3 of ICE chemo.

Thank you to all those prayer warriors out there that put in double time these last few days to see us through this!