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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!


Tuesday, November 30, 2010

No Results Yet

Results for the Lumbar Puncture were not back by the end of the day. As soon as we know something tomorrow I will try to post or have Nikki post - as tomorrow is our MRI. We have to be to Childrens Mercy South at 7am. Her MRI is at 8am and lasts 2-3 hours. We are hoping to be out of there by noon but without any results for the MRI. Once again we hope to have these at the end of the day, however seeing how fast the move over at CMH -- more than likely it will be Thursday before we know anything. Then on Thursday at 10 am we are to go in for her admin check up (they check her out and ok her for chemo). 5 days in case anyone is bored this weekend -- 4th floor Henson is the plan. FYI : Both Avery and I like Starbucks Iced Chai Teas with Soy milk and vanilla....Just saying....this little girl will suck it down -- I have to pour some into her sippy cup to get her to slow down and share!


Holiday Cards and Addresses

Usually I attempt to make this process easy on myself by using spreadsheets and adding addresses to that spreadsheet as the year progresses. This year however...I have not had the luxury of time, consistency or control so I am in need of your help.

We would really like to send out Holiday Cards to everyone that has been so supportive of our family throughout this guess is that many of you do not yet have a picture of our strong fighter Avery. So if I have not sent you a card in prior years please help me out by emailing me your address to add to my list.

This is also a prime time for me to mail out keychains and T shirts - so if you are wanting one of those as well just let me know. We have infant through XL sizes - all are the black t shirts and I have lots of key chain options to choose from (see facebook).

Don't forget the addresses!


Post Lumbar Puncture

Avery had her lumbar puncture/spinal tap this morning. Her and I went in bright and early by ourselves as daddy has some sort of bug and wasn't able to come. The procedure went fine -- poked her twice. They semi-sedated her which really just means they gave her meds to make her loopy. In no way did this stop her from moving and they actually pushed a little more half way through with the hopes that is would settle her a bit. Good news is that it appeared to have no more affect than the previous dose and she continued to wiggle and talk to me the whole time. It took me and a nurse to hold her down as she apparently was not interested in laying on her side for the Dr. With numbing cream and her good drugs, she was fine - just wanted to play. We had a good giggle over her intoxicated state and she smiled at us from ear to ear the whole time. All in all - I very simple procedure.

No idea when we will get results of the lumbar puncture - tomorrow at the latest but hopefully today. As the Nurse Practicioner stated "we are at the mercy of other people doing their jobs". That made me laugh -- then I asked her if she ever watches Grey's Anatomy -- which of course she doesn't as it is not a realistic view of how hospitals work. Last week's episode featured the residents on call at night....similar to the way things work at CMH. In the show, a mom of a young boy starts rattling off symptoms for her son and asked the resident to call the attending dr. She does and the attending has to come in. They determine the child has gas and he leaves, however the mom is not satisfied (apparently she is a nurse at another hospital). So she simply calls the Chief of the hospital and drags him out of bed. Needless to say -- Poop hit the fan! I died laughing and told our Nurse Practitioner they better hope I don't get a hold of Childrens Mercy's Chief or there could be a whole lot of drama!! giggle giggle...

Better get back to de-germing my house from Jeremy's bug. Once it gets one of gets us all...and we have a date with some Chemo this week so we need to be healthy and ready. Otherwise poor Aunt Nikki might be spending her weekend in isolation with Miss Avery while mom and dad recoup!


Monday, November 29, 2010

Pics from the week


Another Thanksgiving has come and gone and we can both honestly say we have so much to be thankful for. This last year has been a chaotic rollercoaster of emotions, but we are so thankful that we've had it easier than some, mostly due to our ferocious little girl's vitality and determination, but also due to all of you. Jeremy and I would not be where we are without the support, prayers and get up and fight attitude's that you all have brought to the table. (ok and sometimes my meds are part of the solution too : )) As you all sat down to stuff yourselves full of turkey and pie, we hope that a little piece of you felt that gratitude from the Christiansens.

Avery has had a good week by far. It started rocky with our losses and a vacation at CMH, but has ended rather pleasantly with high counts, lots of giggles, and too much food. We visited with family and friends this week and stuffed our bellies silly. Harry Potter was also a huge deal - as it always is for this family...ok well for me -- and I was able to catch it twice!! With Nana in town we were able to put up the Christmas Tree and let me tell you what a treat that was for Avery. According to Jeremy I have a lot of "crap" on the tree -- but the more crap you have, the more it looks like a tree from the Macy's window display. Who doesn't want that?

This week is a stressful one for us. We always talked previously about the "Scanxiety" that we feel prior to her MRI's but this one is nothing compared the the last 15 of them. Tomorrow we will go in first thing for a Lumbar Puncture. She will be sedated for this and we hope to have results by the end of the day. The lumbar puncture in October is what showed us the cancer cells had moved into her spinal fluid and were beginning to form. The goal for tomorrow's procedure is to see a dramatic drop in the number of cells present in the fluid. If there is a significant drop, then we can continue the salvage chemo and look at other clinical trials. If there is not, it means things are not working and continuing will not offer us more time as we had hoped. Her MRI is on Wednesday morning, and we are looking for no change on these scans. All along, these have been clear of any additional tumors, including October. We are praying that this is still the case. We hope to get results the same day, however it all depends on the dr's. As soon as we know something we will post. Please put on you extra special praying gloves on any and all angels you know of...and kiss your kids like you really mean it. Mircales do happen & we are expecting one here soon, so stay tuned.

And just for the record -- I won the wishbone wish.....anyone want to guess what I wished for??


Monday, November 22, 2010

Low Counts, Admission and Saying Goodbye

This weekend ended up being bittersweet for the Christiansen family. We had a fantastic time on Saturday morning at the Pancake Benefit with all our friends. And it was great to see everyone, especially those we hadn't seen in so long. Then on Saturday evening we received some sad news. Our friend Lucy, whom I have written about previously, earned her angel wings on Saturday afternoon. Lucy put up a huge fight with this awful cancer and her courage and determination were awe inspiring to those around her. Although we didn't know her well, we feel a connection with her and her family as they have been walking this road with us. It takes an amazing amount of strength, determination and grace to face this monster and Lucy did an excellent job. Please pray for her family as they try to find peace in losing such an amazing little girl.

We then awoke Sunday to hear that Jeremy's Grandma Lippold had also earned her angel wings. Grandma Lippold was an amazing woman - strong and independent. She raised 5 wonderful children and had a whole slew of grandchildren and great-grandchildren - one of which is Miss Avery Anne. She has joined the Team Avery Team in heaven and will be rooting on our continued fight from above with Grandpa Joe, Grandma Johnson, Chuck, Grandpa Lippold and Lucy. Please pray for Jeremy's family as they too attempt to find peace with her passing.

We had a rough night last night, as we could tell Avery's counts were down and her hemoglobin had dropped. She was restless all night and struggled to get comfortable. Our appt this morning was at 8:30 and I expected to have to get transfused, but imagine my surprise when the nurse indicated her hemoglobin had dropped to 6.9 and her platelets were 4. Needless to say, this is extremely low in both cases and she required a transfusion of blood and platelets. The process for all of this is slow and we spent the whole morning waiting....waiting for counts, waiting for blood, waiting for a room. As we were transfusing blood she spiked a fever and BAM! in patient we go! Once again we cultured her blood and started her on antibiotics.....C Diff here we come.

After filling up her tanks, Avery was feeling much better and has been on the move all afternoon. She had a visit from Great Grandpa and GJ before they have to leave tomorrow. Nana is staying the week, which comes in really handy as Jeremy will be driving to IA tomorrow to see his family and for services. We spent Halloween here in the hospital, but are determined to not spend Thanksgiving here. We'll see how that turns out. For now, Avery seems to be better although her fever is teetering on the edge of 100 degrees.

A rough weekend for us by far, but we are hanging in there.


Saturday, November 20, 2010

Avery's Absolutely Amazing Day

Avery had a an absolute blast today! Thank you to all of you that braved the cold this morning and managed to make it out to the pancake breakfast. It was a huge success and we truly believe this little girl had an amazing day. We are so amazed at all the support for our family and we'll never be able to express our gratitude enough.

Avery has since gotten her 2nd wind and is entertaining Nana with her ball machine. Those balls spit out everywhere and poor Nana crawls all over the place to put them back in. No wonder we are always so tired!! We'll spend the rest of the weekend with Nana, GJ, Great Grandpa, Uncle Rob and Aunt Amy. Penny the pooch is also here to entertain us, and we all know how much she likes the puppies.

For anyone not able to attend the festivities, we have Team Avery T Shirts, Keychains, and stickers available. Send me an email if you are interested and we'll get them to you.


Jeremy, Jenn & Avery

Friday, November 19, 2010

Avery's Amazing Day!

Avery is very excited for tomorrow! The pancake breakfast starts early at 8 am and we can't wait to see everyone! Aunt Nikki and her troops have everything under control and we are pumped to see the results. Avery's counts are down to 0 already so Nana will be running around with hand sanitizer tomorrow...don't be offended if she makes you do it 5 times while there. You aren't special -- she'll be doing it to me too.

Avery appears to be healthy and happy and so excited to see all her friends tomorrow. We are going to try to keep a mask on her, but you all know how easy it is to make a toddler do anything they don't want to do. She was able to have a few play dates with her buddy Henry this week and we quickly realized how sheltered she has been as she fought him for the Pink Coupe Car and her necklaces. Lucky for us, Henry spends a lot of time giving up his toys to his older sister Vivian and he happily relinquished his goods to her.

Nana arrived at 11:30 this morning and we couldn't be happier -- she woke up really early to drive all the way from MN. Later this afternoon GJ and Great Grandpa will be here as well to play. Avery is resting up now for all her visitors. Aunt Angie is coming too and she has lots more key chains for us to work on. Uncle Rob and Aunt Amy will also be here later and they are bringing a new friend -- Miss Penny the puppy -- to play with us.

We hope you call can make it tomorrow -- remember it starts at 8 am and goes to 12pm. It is located at the Fraternal Order of Police on 162nd and Metcalf. The flyer is attached in last week's post if you want to see again. We can't wait!!

Jenn and Jeremy

Sunday, November 14, 2010

Team Avery Bonfire & round 2 of ICE Chemo

Avery completed her 2nd round of the ICE chemo treatment today. She did excellent as usual and we experienced no puking or complications. Her counts are stable for now but we expect them to drop hard and fast in the next few days. This round we plan to avoid fevers and any additional stints in the hospital as we are still in isolation and you know how we love that.

We had a lot of visitors this weekend and that helped greatly in passing time. Thursday Chance and Angie Mander came to spend the day with us. We finger painted and played all afternoon! Both kids were out like lights early! Then Aunt Angie arrived and we spent all day Friday playing with her and working on Team Avery Keychains. Then Aunt Nikki and Harper came to play. Daddy and Grandma Lippold came later and then so did all the Manders again. Once more we had a tired little girl on our hands who promptly crashed. Saturday we visited with Angie, Nikki and Harper again and then our friends from Des Moines, Megan & Missy came and brought lots of yummy snacks.

Last night Grandma stayed with Avery while Jeremy and I and all our friends went out to a friend's house for a BBQ and Bonfire. It was a fantastic time and it was so nice to see everyone out and in a more entertaining atmosphere. We really needed some away - normal - time and that was a great evening for it. We are so appreciative to Tiffany and Mitchell Dooley and all of their family for putting on such a fabulous evening. And thank you to all of you that were able to make it. The Team Avery T shirts and KeyChains were a hit and they will be at the event next weekend as well in case you are interested.

This week we plan to work hard on our words and our walking as we didn't get a whole lot of practice while we were in the hospital. Before it gets much colder we need to get as much exercise in as we can! Heard about the snow in IA and MN -- warm wishes are being sent from the warmer climate here in KC. Although secretly I can't wait for us to get some snow as Avery will love it!

Just a reminder to all -- if you can join us next Saturday morning, please do! Avery's Amazing Day begins at 8am with a pancake breakfast and lasts until noon. There should be plenty of activities for everyone and we'd really like to see you all. Avery plans to have the time of her life with all her friends!


Saturday, November 6, 2010

Avery's Amazing Day - November 20th 8am

Broke Free

We finally managed to break free of the hospital on Tuesday night. The Dr made a comment that she would let us go home that evening if Avery had not spiked a temperature by 7 of course we were monitoring that like a hawk. I think we took her temperature 52 times between 6:15 and 7:00 and while it wasn't "normal" - it wasn't 101.5 degrees so we were finally able to high tail it out of there. The Resident came in at 7:15 and asked if they had rechecked it and when we told him no but he could do it, he stated the nurse would handle it and then they would make a decision. Little did he know we were packed up and hitting the road no matter what. After almost 2 weeks and nothing growing in her cultures, we had decided that she has a cold and needed a good night's sleep in her own bed. Sure enough, here it is 3 days later and cold is gone. In the mean time, we discovered part of the reason she wasn't eating is because she is teething. 2 teeth appear to be coming in on either side of her mouth making eating a pretty uninviting option. This could also be a factor in the fever, all though all dr's agree that teething doesn't cause fevers. I'm pretty sure I could come up with a huge panel of parents that would disagree, but whatever. I'm not the one with the DR in front of my name. I do however have a pretty important title in front of mine....MOM. I'd like to see anyone argue that I don't know better about my kid.

Went to clinic on Friday to check her labs and told the NP Jen Sullivan, that we'd be very close to 500. She smirked and said "you think so?" -- 45 mins later she was in shock as she told me her ANC was up to 450 -- Um -- no DR, but pretty sure I am that good. I'm really not sure why they don't listen to me more. Seriously. She has C Diff, check it -- oh looky there -- she does! St Jude was really great about that. You always felt like you were a part of the team taking care of your child. Your input matters, and your opinion is important. I think that is the toughest thing about not working with St Jude, CMH just doesn't value what you have to offer as the person with the child 24/7.

Nana left on Wednesday and we were very sad to see her go. She sure keeps us on track and takes care of all the crap work so we can focus on Avery. I keep trying to convince her to move into the house across the street, so far she isn't biting. Avery just has a ball with her. I swear she keeps her so entertained with the most ridiculous of items. How you can play with 2 pennies and a broken eye glass case for 30 mins straight is beyond me, but she just loves it! Not to worry, Nana will be back soon enough. I managed to finagle her into staying an extra 4 days so it was about time I let her go home and sleep in her own bed and see the puppies.

Avery's hair has fallen out again. Not a big deal, but for those of you that have seen her recently, it may come as a shock when you see her. She looks much more the part of the cancer kid without any hair. Good news is it's now winter hats will be a more tolerated accessory on her part when her head starts to freeze! Good thing for me because she will now be able to wear the ridiculous amounts of hats I have spent a small fortune on this year!!

The plan for chemo this week has been delayed. In order for us to start chemo her ANC has to be at least 500 -- that wasn't the case on Thursday due to her cold and all of our in patient stays. The soonest they could schedule us in for chemo is Wednesday of this week (don't even get me started on the scheduling). So Wednesday we will be admitted for fluids and then Chemo will start on Thursday and run through Sunday. Since it requires 24 hours of fluids post treatment, we will be inpatient until sometime on Monday evening. Avery did well with the first round so we don't expect any issues with this round either. Towards the end of the month, we will have another MRI and Lumbar Puncture to see if this chemo has helped at all. Once I have a firm date on that, I will let you all know. In the mean time, prayers for a miracle are still at the top of the list.

Some of you may have already heard about the upcoming fun, but in case you had not you are in for a treat! Some friends are putting together a terrific event for Avery. On November 20th we will be taking part in Avery's Amazing Day! Located at the Fraternal Order of Police in OP, there will be a pancake breakfast starting at 8 am followed by an amazing day of fun for the kids. Rumor has it there will be a Magician, a Moon Walk, A Balloon Artist, a musical guest, and lots of treats! Please join us in giving Avery an Amazing Day - she sure deserves it! Avery is very excited to see all her friends! If you have questions, please contact Nikki or check out FaceBook.


Sunday, October 31, 2010

Happy Halloween

At it again....

As if we weren't having enough fun already.... Avery came down with another fever last night so once again we packed it all up and headed back to Childrens Mercy. This time we were able to go right up to 4 Henson instead of hanging out for 5 hours in the ER. Much better than last time. She is of course in isolation again...don't even get me started. I've decided she is destined to be a loner that plays with adults only -- good thing I am total riot most of the time.

She had a fever last night when we came in of 101 degrees and they gave her tylenol -- that lasted for a couple of hours and it slowly crept up again. She had a rough night as we suspect her tummy was giving her troubles. She spent a good majority of the night whining to herself and waking up, only to be consoled by daddy--- standing up.... he he he. She wanted nothing to do with me but of course wouldn't let daddy sit down in the chair either - figured that makes up for not wanting mommy. None of us got much sleep and 7 am came way too fast. She has had a low grade fever this am but seems to now have gotten rid of it for now.

Nothing has come back in the cultures yet so more of the same. Dr's say they don't expect much to show up and plan to finish antibiotics and kick us out after 48 hours of negative cultures. The good news is that her Hemoglobin and Platelets dropped dramatically and she was in need of transfusions last night so they got her all hooked up. (hmglbn - 7.0 and Plts 26)

Her hair is an absolute riot at this point. When it starts to fall out it tends to dry out and stand up a lot....and this time we actually have hair to stand up! It is the worst case of bed head I've ever seen -- of course making us laugh. It's dropping quickly and I suspect will be all but gone by next weekend. It's a good thing she looks good bald. Very annoyed we just bought a brush for her on Wednesday -- well at least it will come in handy when it grows back in.

Halloween is somewhat defunct for us as she is in isolation and can't participate in anything at the hospital. Good news is out of all the things I forgot to pack last night -- the Tinkerbelle outfit was not one of them! So, we'll snap some pics this afternoon and get them posted for all to enjoy. We are bummed she is going to miss out on the Trick or Treating cause I think she would have really loved that. Jersey has also lucked out as I am not home to put on her tutu and wings for the kids tonight.

We are doing fine...plenty of food -- as Nana is baking our dinners at the house and bringing them up for us to enjoy. I will say the bed here at CMH is much more comfortable than the couch/benches at St Jude...even if I have to share it with Jeremy.

Avery is content to play with the toy microwave I found in the play room and pretend to eat the fake food. She also finds watching the pigeons on the ledge highly amusing, even if they are sitting among their own feces and a dead buddy. Ugh. Once again, no mat to play on - but making due with the bench.

Jenn & Jeremy

Tuesday, October 26, 2010

Fever and Neutrapenia

Avery started running a fever Sunday night around 8 pm. The rule at CMH is that 101.5 is considered a fever and requires a call to the Nurse on Call. So naturally at 101 degrees we called....The nurse told us to come in so at 10 pm on Sunday night we were on our way to the ER with a possible admission in our sights. After being seen in the ER and after taking a chest X-ray they decided to admit us. At 2 am we finally had a bed upstairs. After getting her settled and trying to go to sleep, (at 4am) I watched her toss and turn and start to shake. We grabbed the nurse who confirmed that she had spiked another fever - this time 103 degrees and in came the cavalry again. After another hour and a half of antibiotics, tylenol, and a lot of rocking with daddy we finally got her calmed down enough to go to sleep. 5:30 am.

Cultures have been negative so far and the chest x-ray was clear. They can hear some faint crackling in her chest and today her nose began to run. They are treating her for pneumonia although she hasn't technically been diagnosed. She has 2 antibiotics running now and the plan is to stay another night before being discharged tomorrow on oral antibiotics. You all know where this road leads....C Diff -- so I assume next week when we come back in for her next round of Chemo we will be in Isolation again - our favorite. We are in isolation right now since we were at another hospital recently and they can't test her for VRE. Erring on the side of caution - we are in isolation, of course.

She was feeling much better yesterday after waking up at 9 am and then again today. They can't quite pinpoint the cause for the fever at this stage, so they just treat her with antibiotics. Her counts are still at 0 and last night they transfused her platelets as they were getting rather low. Hopefully we are working our way up now and the next few days will raise her counts. All in all she has been having some fun as Nana & GJ are here, as well as Aunt Aubrie.

Jeremy and I are hanging in there...sleeping on the little bench like before, proves that we are indeed too old. But we manage. Thanks for the continued support everyone....once again Avery is such a fighter, small bump in a long road, but one that she handled with grace and ease.


Saturday, October 23, 2010

New Update

I know its been a few days since our last post...we apologize for not updating sooner. Jeremy and I have been struggling with our emotions the last few days and to tell you the honest truth, it was all we could do to make it through the day. I've considered today a success in terms of dealing as I have only lost it twice - considerable improvement from the previous 7 days. The bonus is that now we have something else to focus on - visitors. That helps.

Avery's counts are down...ANC of 800 yesterday and her hemoglobin was at 7.4 - which means we made them transfuse. Typically they wait at CMH to transfuse when they are below 7 -- St Jude uses 8 - I freaked out and won. Small battles right? After the 4 hr transfusion she was a much happier girl and full again of giggles. We will wait for her counts to drop off entirely and then come back up. We are then scheduled to go in patient on November 4th again for 4 more days of Chemo. After that round we will do another MRI/LP to see if the treatment is helping. If it is, we can continue for a few more rounds. If it is not, then we will stop.

Grandma Lippold and Uncle Jason arrived on Thursday night and spent some time with us. Today we went to the Zoo - absolutely perfect day for it. Humid and 75....typical Kansas City random weather in mid October. We were also followed around by paparazzi...aka - McKenzie Ring, who has graciously offered to document a weekend with us. She snapped away while we toddled around the zoo and I'm sure caught some great shots for us. We are so grateful to be able to have that opportunity and that we could do it with a friend, rather than a stranger. So thank you McKenzie. (she's from the Omaha/Council Bluffs area - so if you are looking for a photographer let me know!)

Tonight we arrived home to Nana. She drove down from MN today and will be spending the week with us. We were really excited, because Nana always arrives with entertaining gifts. This time she brought a new necklace that lights up, stickies for the windows, and light up-spinny thingy that glows. Needless to say Avery was thrilled. Tomorrow when we wake up GJ will be here as well. Yay! This week is also our week to carve pumpkins and put on our costume....daddy is not cooperating and is refusing to wear the green tights, so Tinkerbell might not have a Peter Pan this time. I'm taking volunteers if anyone has the guts....

Jeremy and I are trying our best to make sure Avery has as much fun as we can possibly provide her. If anyone has any brilliant ideas - we'd love to hear them. Thank you again, to everyone for all of your support. This time it's going to be a much heavier emotional support system that is needed and we are so glad to be back in Kansas City surrounded by people who love us.

Still praying for and expecting a miracle...

Jenn & Jeremy

Sunday, October 17, 2010

This weekend....

In Patient Stay

We were admitted on Friday afternoon and Avery started her new chemo around 10 pm that night. Chemo went fine and yesterday she was her normal rascally self. We spent some time outside in the garden again and walked as much as we could. She has been on fluids the entire time and as a result woke up pretty puffy this am. For those of you that saw me right before I had her....that's what she looks like. Jeremy and I laugh as she finally looks like me! Of course the swelling will go down in a few days once they cut her fluids. For now, they are neccessary as we have all those crappy drugs in her again. She seems to have a fine appetite so we are hoping we have the nauseousness under control. No nap yet today -- we'll see how long she lasts. She seems to be a bit weak and lethargic today - but still full of attitude at the same time - trying to get around like normal. She and daddy are watching some football while she plays on a really loud keyboard piano. Makes me laugh.

We are anxious to finish this stint up so we can get back on the road and head home. Jeremy and I are having a better day today. It appears we needed a few days to catch up to the rest of you and now that we are there - we are ready to start investigating our options. Avery is too strong and too important to not make sure we check out every thing out there. I can't imagine a world where she doesn't exist so for now - we just won't and we'll move forward with the next steps. We are looking to see what protocols are available at other hospitals for children with recurrences of Medullablastoma. At the same time, we'll be looking at what changes we need to make at home to give us the best situation for the 3 of us possible.

This sucks. No one should ever have to do this. We are mad and frustrated, confused and disappointed, but mostly determined. Determined to make sure we give her every last chance we can. Determined to make sure she has everything she could possibly want. Determined to beat the be that mystify the Dr's and shatter the expectations. If anyone can do that -- it's us. Avery has so much more to do in this world and we are going to prove it. With God walking right beside us the whole time -- we will make it through this - failing is not an option.

We need all the prayers out there that you all can muster. We need everyone to give this to God and know that he will make it right. And we are going to need a lot of support. We've asked so much of everyone already, but we need even more now. The gloves are back on - bring it.

Jenn & Jeremy

Friday, October 15, 2010

I know how to help

Hamming it up for the camera as she helps daddy flush her lines. It's amazing how far we've come since last December. We took a baby in for an ear infection and now we all have nursing degrees - including my little girl.

This is a rough road people. I can't explain it. I'm not going to even try. But what we need right now is to give her every last ounce of a great life that we can squeak in. That includes getting the opportunity to see all the people that love her so much. So when we get back, we want to make sure that happens. In the mean time, still expecting a miracle so keep the prayers coming.

Thursday, October 14, 2010

Rough Day

Jenn and Jeremy received the results today from the MRI and lumbar puncture, and sadly, they were not what we’ve all been praying for. There are cancer cells in Avery’s spinal fluid and the prognosis is not good. They met with their doctors at St. Jude’s this afternoon to decide what their next steps would be. They are going to begin a new chemo protocol called ICE at St. Jude tomorrow. This will involve 4 days of chemo and then they will come home to Kansas City where they will continue this protocol from Children's Mercy. She will get the chemo every 4 weeks. Most importantly, though, they will be home, together as a family.
The coming days, weeks and months are going to be extremely difficult for Jeremy and Jenn and their families. I humbly ask that you pray for them. I ask that you pray for peace as they make decisions that no parents should have to make. I ask that you pray that they find comfort in whatever decisions they do make. I ask that you pray that they get to enjoy every second they have with that sweet, sweet little girl. And most importantly, I ask that you pray for a miracle.

Tuesday, October 12, 2010

St Jude Day 1

We arrived at a fairly decent hour last night around 11:30pm to find that once again we'd been cast to overflow lodging over at Target House II. Not a surprise as it appears the only time we actually get to stay at the Grizzly House is when she is in isolation. Not asking for that -- so we are good! Avery was awake almost the entire ride -- slept for 30 mins at one point, but at 11:30pm she was wide awake and ticked at still being in the car. Needless to say, going to bed was a struggle after that

Today was a busy day as we had to be at labs at 7:30 am. We met with the nutritionist, who gave us a calorie builder called Dualcal to add to all the things she eats. She weighed in at a whopping 9.5 Kilos which is about 20.9 lbs. She also measured in at 32 inches tall, which means she is still growing a bit! Our goal is to get her closer to 24 lbs so we'll see what we can do. Next month makes eating difficult so we need to fatten her up in the next week and a half before we start the next round.

Next we met with the Dentist who suspects we may have an issue with our enamel on our teeth - so we will be paying extra attention to that. PT went well and Miss Lauren showed us some new exercises on the big ball that help us focus on core muscles. We don't have one -- so for those of you out there that bought an exercise ball with the best of intentions....and no longer have those intentions -- we need one. Miss Lauren was very impressed with her progress and attributes some of her struggles to lack of weight/muscle gain. We'll be working hard on both these next few months.

After PT we met with NeuroOncology - Dr Armstrong and Lindsay. They did an exam and were very pleased with her growth over the last 3 months as well. They gave us great news and said they don't anticipate us needing to keep her Hickman catheter (BOOB TUBE) in her chest past her next appointment in mid January. The only reason for us to keep it is if she has complications or her counts are not stable and warrant rechecking weekly for a period of time. That being said -- she will finish her chemo on January 14th 2011 - and her 2nd birthday is a week later.

We also met with the Audiology department and they have indicated a transmitter/receiver option is something we need to start thinking about. For those of you who have no clue what I am talking about (as I didn't) this is a device that will be worn by whoever is in charge in a group setting. For instance the teacher, the story tell, the coach, the mommy -- whatever person it is crucial she hears in an environment where background noise can interfere with her ability to hear what is important. Yes someday, she will be carrying this with her and handing it to each teacher at the beginning of class.

Overall, I pleasant but long day. We met up with some of our friends including Belle, Megan, and Collin. It was great to see them all -- a little reminder of the amazing journey that we are all still a part of. Tonight we plan to have dinner with Megan and Brandi at the Target House. Megan had a rough day - as did Brandi. They are concerned she may be having seizures and did an EEG to check brain waves. Needless to say -- that freaks us all out. Tomorrow we meet with OT, Speech, Optomology and she has her MRI/Lumbar Puncture in the afternoon. Results won't be given until Thursday.

Keep the prayers coming....

Jenn, Jeremy & Avery

Friday, October 8, 2010

Avery's counts were surprisingly good this week. ANC was at 1620 - which is almost 300 points above last week. We are very happy about that as we totally expected them to drop lower. Her hemoglobin has dropped significantly although she won't get a transfusion until she hits 8 and she is at 9.6 right now. Platelets are also low - 240k and they are normally above 300 for her.

We are hanging low this weekend as we prepare for our trip next week. The plan is to leave after work on Monday night and drive to Memphis. We won't arrive until after midnight, so it will b e a long day. Our first appt on Tuesday is at 7:30 am and the MRI/Spinal Tap aren't until Wed afternoon. Results will most likely be given on Thursday morning. We will try to post as soon as we have the "All Clear" message.

For now, keep her in your prayers. We are very anxious about this trip and could use all the positive thoughts you all can muster!


Jenn & Jeremy

Wednesday, September 29, 2010

Round 3 - Day 6

Round 3 started on Friday and we found out just how quickly those Chemo drugs start to work. Last Wednesday Avery's counts were at 2150....a week later she has dropped to 1350. So needless to say "psycho sanitizing" parents are back on patrol. Shoes off, wash hands, touch nothing, wipe down anything dropped on the floor, etc. It's going to be fun. I think I may have bought out Walmart and Target's supply of handy wipes - sorry.

Avery's appetite has improved immensely in the last 3 days. Whatever is in that Erlotinib she took last month makes her not want to eat. We dropped close to 2 lbs last month due to it. This month we'll hopefully make that up, especially since Nana introduced Andes Mints for dinner. The down side to being on these others is that the counts drop so low with these 2 drugs. If it's not one thing it's another -- right?

Avery has been rocking the language world this past week. We swear she said the word "GO" the other day. She seems to be making huge improvements in mimicking our speech patterns and has been diligently working with us on EEE, AHHH, OHHH faces and sounds. I think we may have a 1st word on the horizon -- hopefully it's better than "go" and starts with an M or D.

We've found a new fun activity for us girls to do at night. We really like to take walks and point out the different things in the neighborhood. Yes, Jersey rides on top of the stroller....We were given an older model jogging stroller so we could actually move a little faster and maybe get some exercise from a friend. But sadly, the wheels are a little done for and are flat on one side. As a result, Avery gets quite the shake up while on our walks - so if anyone knows where to get new wheels -- let me know! I've searched the internet, but lets be reasonable, I really have no idea what I am looking for. And the brand no longer exists - so that option is out. We may have to take out the slow shopping stroller from now on!

Lastly, Avery's head is showing signs of hair regrowth. As you know, the area in which they radiated is questionable in terms of hair coming back. We expect some, but don't expect all and are fully expecting a large amount to not regrow at all. Good news is that she is a girl and the hair on top will cover this back area once it grows long. We did notice though that her hair seems to be slowly returning -- thinly, to a perimeter area of about an inch all the way around on the outside. This is so super exciting and we can't wait to see what will happen over the next 4 months, let alone when treatment is done in February. She looks like her daddy to a T -- but let me tell you -- the one thing I gave her was the capacity for a full head of thick hair and that will come in mighty handy when she hits 13 and really starts to care! Thanks Grandma.

This weekend we plan to head over to the Pumpkin Patch with our buddy Harper. Hopefully it will stay beautiful out like it has been and we'll have a great day with lots of fun pictures. I mean really - who doesn't like fall? It seems like we just finished this season...the holidays just seem to fly by so quick and then the next thing you know it's the middle of January. To us, it doesn't feel like almost a year, and at the same time I feel like this year has lasted forever. Totally doesn't make sense, but that's the truth. These next 4 months could really drag if it were any other time of year....but fall, and Halloween, Thanksgiving, Christmas, New Years -- and don't even get me started with the craziness that happens at work during these months....I mean a person really never has a chance to catch their breath and the next thing you know it's 2011, she's 2 years old and you are done with Chemo. BAM!!

Tuesday, September 21, 2010

End of Round 2

Friday marks the end of round 2 for Avery's maintenance chemo. We will start round 3 that day and be back on the 2 chemo drugs that so nicely dropped her counts last month. We are hoping she has built up enough to last the month and stay above 500 as we have some major plans for Halloween that include costumes, candy and other kiddos!

Avery is working hard on her walking and standing but we seem to be at a stand still in terms of physical momentum. The great news is that the girl is turning into one smart cookie! She loves her songs and actions and has a great time pointing to Daddy's truck, Jersey Anne and trees. She can pick out a lot of items in a her first word books when I ask her where they are.

Trina, our PT lady in KC brought Avery a new get up today. This walker is able to be hooked up to the Juppy so she can have a little more support. She seems to really like the contraption so we'll see if this doesn't help her even more.

This past weekend we finally met part of the Weber family here in Kansas City. For those of you that don't remember, a few months back we were contacted by this family as they found themselves in a very similar situation. Their daughter Lucy was diagnosed with a brain tumor right before her 1st birthday. She has since had the tumor removed and been receiving treatment here in Kansas City at CMH. Lucy and her family live literally, around the corner from us. This weekend they had a benefit for Lucy up the street and Avery and I stopped up for a bit to say hello. It was great to meet Bev and Lilly and we look forward to spending some time with them all. We miss all of our friends at St Jude and it's nice to have someone here close by that truly understands the experiences we are going through. So for those of you looking for another little girl to add to your prayer lists, please tack on Miss Lucy Weber.

Avery is anxiously anticipating the arrival of the best Nana in the world. Friday Nana will be here to spend the weekend with us girls as Daddy takes some boy time to hunt. Overland Park is having their annual Fall Festival and we are very excited to attend. Last year Avery and I randomly stumbled across this event on a Saturday morning and we loved loved loved it.


Jenn, Jeremy and Avery

Sunday, September 12, 2010

ISU Game

Avery was extremely bummed yesterday at the Cyclones loss - but still looked cute in her ISU gear! She got to hang out with her buddies Harper and Chance and some of her favorite Aunties as well!

Counts are still at 1300 and holding steady. We are 11 days away from starting round 3 - which means the counts will most likely drop again. The month of October will most likely be spent at home...but as cold and flu season are fast approaching it is probably inevitable anyway.

We went to church again today and for the 2nd time arrived to a teared up munchkin. She seems to be really interested in playing with the other kiddos for a bit but then moves into that anxiety stage of "where is mom & dad?" It's strange to see her do that - but I have to admit it makes us feel pretty good too -- totally selfish I know.

Fall is fast approaching and you can smell it in the air....albeit still 80 degrees here in KC. Soon enough we'll get to enjoy those few weeks of open windows and falling leaves, oh and lots of football and hunting - yea. It's really strange to think that Avery and I skipped the entire winter, spring and summer in KC and are now rounding on the end of the year. Fall always hits with such gusto and chaos as we race towards the finish line of New Years....I have a feeling that these next 3 months are going to fly by so fast and I thank God for that. Before we know it - it will be February and she will be done with treatment and finally able to build herself back up. What a journey - we thank the Lord everyday that we are blessed with all of you in our support circle and that our Avery is the strongest little girl ever. Someday we can only hope to be able to pay it forward with as much passion as we have seen from all of you....thank you.

Jenn & Jeremy

Thursday, September 2, 2010

It's already started.....

It's official....they are opening an American Girl store in the Oak Park Mall near our house and I was afraid of how much money we were going to be spending as Avery gets more and more into dolls. I thought I had at least another year or two before she was begging for one. Well, today her first one arrived! Itty Bitty Baby and her backpack of accecories came in the mail today from the very sweet Kregels! Avery is in l-o-v-e with her itty bitty baby. The eyes open and close and she has a blanket and bottle -- the whole 9 yards....even outfits! It was adorable to see her open the box. Now we just need a name!

She had a rough day today. Doesn't seem to want to eat at all and was tired. She has also either adopted an attitude as a fast approaching 2 year old, or isn't feeling as hot and as a result is not her sweet self. Either way, she's a bit out of sorts. The good news is that her counts are up still -- sitting roughly at 1300 which will make our visit to IA much safer this weekend. We are really excited to see our Iowa Team Avery and can't wait to give all kinds of kisses and thank you's! We are also excited for Monday's parade as Avery has been named Hoo Doo Days Princess 2010...this means a ride in the parade and lots of waves for everyone.

We've figured out a way to get the Chemo down this month, although sadly it resembles the same method I mentioned in an earlier that I mostly do for our furry children. Oh well --- 2 fruit snacks at 7:30 am each day really shouldn't be that big of a deal...right? We talked with our friends, the Parkers tonight and we are looking forward to next month when we get to see them again in Memphis. We've managed to coordinate schedules to be there the same time as them and that makes things just a little bit better. The anxiety that accompanies a parent as they wait for those scan results is gut wrenching. It's nice to be able to share it with someone who really knows the same feeling. On that note, Megan Parker is doing good and is starting preschool here soon. This is fantastic as she will be able to work on her PT/OT while there as well.

Well I better get back to the Itty Bitty -- we are working on putting baby to sleep now. We've mastered hugs & kisses and feeding baby already. Oh and Go Cyclones!

Can't wait to see Underwood/Neola/Minden/McClellan/Council Bluffs people this weekend!!


Saturday, August 28, 2010

Avery has had a great week this week! First we started with our Hearing Aid fitting on Tuesday, which went well. She seems to not be bothered by the hearing aides and we can definitely see a difference in her reactions to sounds and noises. She heard her song I think for the very first time today and I watched as she listened intently as I sang along. The hearing aides are in competition for room behind her ears with her glasses so we are constantly attempting to tuck them back behind there. Jeremy thinks her ears will get stuck sticking out since they are so loaded down! We had 2 slight snags, one of which was the settings were set very sensitive and as a result any time she was being held, in her high chair, or crawling near furniture the aides would emit a high pitched squeal! We have since shifted the settings and are doing much better. The second snag included me and a microwave.... apparently we are supposed to put them in a jar with some little contraption that draws moisture out of them at night. As the contraption collects the moisture, it turns green and then you are supposed to microwave it to dry it back out. I melted it. Whoops. Sure hope they can send me a new one.

The second excitement of the week was the start of the new chemo. This is a daily pill that is given on an empty stomach, followed by no food. We of course attempted to give this yesterday and failed miserably. I mean how do you get a 19 month old to swallow 2 pills? We attempted crushing, which is a no no with Chemo but that didn't work either. Today we tried dissolving in water, but it didn't dissolve entirely and left a ton in the bottle. At this point I'm not even sure what to do. If she'd eat, I'd totally wrap it in a piece of cheese and push it down like I do with the dogs... good thing she won't eat much. So for tomorrow I am thinking of crushing it slightly and sprinkling it on a bite of pudding. So much for not eating. This round is 28 days straight of taking the meds. Hopefully this drug (erlotinib) will have less of an effect on her counts. At this point we are sitting at 1000 ANC. This is much better than 700, but still low in terms of normal. I am really hoping that this next 28 days gives her body a chance to recoup those numbers a little higher before we start round 3 and the 2 drugs that she was on last month again.

Avery and Sharon have been working so very hard on her strength and skills. She is going up and down the stairs on her tummy great! She can color sort and shape sort her puzzles and the kids loves loves loves her baby. We picked up a doll umbrella stroller and then weighted it down with velcro weights and she pushes that bad boy all over the house. She also seems to never get bored with chasing Jersey... good exercise for both of them!

We are anxiously awaiting the arrival of Grandma Lippold. She is coming to spend some time with Avery today while Jeremy and I go out to celebrate our 4 year Anniversary....yes it's only been 4 years. I know we feel like the last 8 months have added on at least 3 more! We are spending some grown up time together while Avery and Grandma have a sleepover. She is really excited!

Thursday, August 12, 2010


Avery's counts have dropped again. They are currently just above 700 and leaving us a little nervous. Hemoglobin and Platelets have also dropped so we'll be watching her closely for the next week. While we aren't on complete lockdown, we certainly won't be taking her out in public anytime soon. Counts are checked on Wednesdays, so until then we'll be on high alert. The good news is that there is a lot more space for her to explore and roam in at the house than we ever had in a hospital room! She has had a runny nose the last few days but I really think its been her allergies that have been doing that. She acts fine, so we'll just keep an eye out.

Her and Sharon have been working very hard on pushing up and going up and down the stairs. They have been practicing identifying objects and pointing as well. This morning I asked her to point to the puppy and she did! Maybe she can hear better than we thought! Babbling a ton as she was before, still no words though. Well we have date to talk to Nana on Skype ...better get to it!


Tuesday, August 10, 2010

One Drug down...1 to go

Avery finished up her first chemo drug this week and is now only taking one for the next week and a half. She will have a week of rest and will be tested before starting the 2nd round of oral chemo. This drug will be taken the entire 28 days of the cycle.

She seems to be doing well on them and has had minimal side affects, mostly being tired. She is a smart cookie and is very pleasant as I give her her normal meds in the morning, but when I go for the ones in the fridge she becomes a tight lipped turd. Rightfully so, I don't believe they taste as hot as her others do. But still -- I bribe her with fruity cheerios at this point.

She has been working very hard on climbing the stairs, much to the exasperation of Sharon! She had no idea this job came with exercise! As I type this Avery is attempting to call someone via the mouse -- everything is a cell phone to her. She has decided the best way to go up and down the stairs is like all of us do -- facing forward and she really wants a railing at her height. Her stitches are still visible but I honestly think it has more to do with the liquid band aide stuck to them than anything else. On Friday we are still on track for hearing aide fittings. I really hope they open up a new world for her that includes the words Momma & Daddy, and maybe Nana as that would just tickle her to pieces. Of course, you all know 3 months from now I may be praying that she stops talking at some point so I can have some quiet time! Ha!

Jeremy and I are getting into a routine for now. I have been back at work for the last few weeks and things are starting to get back to normal. I spend my day trying not to get into too much trouble and at the same time trying to filter in all directions. I am not always successful, but I still manage to keep my job. Jeremy is working hard out in this heat- unbearable in my book but he and the rest of the Ryan family sure are tough. Jersey is happy to be home...I think. This is questionable as she tried to get in the car with Nana when she left this weekend. Maple Jo and Cy missed each other terribly but I can tell she misses her comforts at Aunt Lori's house and her new buddy Blackjack. She spends an awful lot of time trying to devise a way into the house! (and yes the garage has AC)

I turned 30 on Sunday....kind of crazy. Never in my wildest dreams would I have pictured my life this way....a husband that loves me to pieces (even when easily distracted by moving antlers), a daughter whose strength, determination and hugs bring me to my knees, and a support circle consisting of the best of the best, all there to lift me up when I need it. Here's to my next 30 years...may I learn as much in them as I did in the first 30.


Sunday, August 1, 2010

Avery's Party

Thank you to everyone that sweated it out with us on Saturday. Avery's Welcome Home Party was a huge success and we managed to knock her out till 9:15am on Sunday morning! She had the time of her life seeing everyone and playing with all of her friends. It was a truly amazing afternoon and we loved getting the chance to see everyone.

We didn't realize how many gifts you all had brought for Avery until this morning. What a shock when we sat her down to open them up and they were piled around her. She was in love with all the new toys and we thank you so much for helping us make it such a special day for our brilliant little girl. We sure hope everyone had as much fun as we did!

Thank you for all the continued loved and support for our family as we continue down this long road. Being home is the best feeling in the world and being surrounded by people that love and support you - well it just doesn't get any better than that.

Jeremy, Jenn & Avery
Jersey Anne, Cy & Maple Jo

Tuesday, July 27, 2010

Hearing Aides

Avery's Audiology Dr called today from St Jude and she wants to move forward with getting her fitted for hearing aides. Her hearing deteriorated since the last hearing test was done in May. This pushed her over the threshold and she is now a prime candidate for hearing aides. We meet with the therapists tomorrow to discuss her plan for moving forward. Being home is a great help I think and can't wait to see how she develops with the comfort of home surrounding her.

Chemo also arrived today. I was really excited to see the FedEx man outside the door -thinking maybe someone sent something cool. But instead I got a box marked "perishable" and instructions to refrigerate asap. Ugh. What a downer.

Avery and I have a busy day ahead of us that includes laundry and a trip to Walmart to pick up some essentials. We may even swing by our new friend Lucy's house to drop off some much needed headbands and hats...Lucy is starting to lose her hair. We can't wait for daddy to get home as he promised us some much deserved frozen we love our frozen custard.

Can't wait to see everyone on Saturday. One of Jeremy's customers gave Avery a bubble machine -- let me tell you that will be a big hit with the kiddos and we can't wait to break it out! I know everyone already knows this...but just in case I thought I would mention it....if you or your kids aren't feeling so hot this weekend, please save your visit for another time. We will be here and up for visitors any time - so if you aren't feeling 100% - we understand (and appreciate) you waiting to visit. As much as we want to say she is doing good -- she is still on chemo and very susceptible to being sick and not being able to fight off an infection. Oh and we will probably be psycho about the hand washing / hand sanitizing on Saturday -- no offense, I will be asking Nana if she washed her hands just as often as anyone else! Just a forewarning!

Kisses from Us!

Jenn & Avery

Monday, July 26, 2010

It's Official

We made it home.

We left a day later than we were planning, but we finally made it home on Saturday evening. The child that was in surgery before us ended up taking a lot longer than they anticipated so we weren't able to get in for surgery until 2:30 on Friday. (yes we arrived at 7am) After the 30 min surgery to remove all of the screws, they hooked her up for her hearing test. We got the results, however they weren't able to compare them to 2 months ago when she had it done so we aren't really sure if her hearing has gotten worse. Bottom line is that she will need hearing aides at some point but until she is talking, we are not in any hurry. We will discuss our options when we go back in mid October and she will most likely have them by Christmas.

Surgery was quick and simple. Two of the feducials had definitely worked their way out of the skull so they had to come out. The other was doing fine, but they removed it anyway. She now has 3 shaved spots on her head to match the bald spot in the back of her head from radiation. She looks like a 3 year old that got a hold of the scissors...but that's why we made so many hats, headbands and bows!

Due to the surgery, they postponed the start of oral chemo and we will begin that on Friday. We have appointments this week to meet with the county to do evaluations and make a plan for therapies moving forward as well. She has been doing really well at home so far. She has all these toys that she hasn't seen since Christmas and boy is she having a ball! We moved all of her stuff upstairs to the big room so she can play on carpet until she has better stability. She still loves climbing, so on and off the couch, her chairs, the stairs -- anything she can pull herself up on. We really need some of those jungle gym wedges so she can climb!

This week we are attempting to ease back into our life, slightly adjusted. I spent all day yesterday packing up outgrown things, rearranging for new things, and trying to make it all efficient. It is amazing how much room her line change supplies and meds take up!! Jeremy worked on the yard and cars of course. And we checked out a new church down in Olathe. We really liked it and they had a great children's area set up - lots of security and like 10 different age group rooms. We are going to put her in with the 6-12 month olds as they are crawlers and much more her speed at this point. They had coffee, which is all it really takes to get Jeremy there so we are set!

We are really looking forward to Saturday and to seeing everyone that can make it. Avery turned 18 months old last Wednesday and so we are celebrating her birthday as best we can. She was cheated out of that 1st birthday party! It's an open house, so come and go as you please and stop over whenever you get the chance! Avery has turned into quite the snuggler in the last few if you crave some lovin' - I suggest stopping by!

Only 2 things are missing from the Christiansen House...Jersey Anne and Maple Jo! They should be here on Friday and boy let me tell you - we can't wait! Cy really misses his girlfriend/best friend. They've been spoiled rotten while we were away so coming home won't be nearly as fun as they think it will be, but we'll try to spoil them just a bit too. It has been great to not have to worry about them the last 7 months and to know they were being taken care of. So a great big "Thank You" goes out to Aunt Lori & Uncle Bob, Rob & Amy, Nana & GJ, and Dan for taking on our other kids!

Jeremy left for work this morning kissing both of his girls goodbye and knowing that a 15 minute drive was the only thing separating us. I think his week will be a great one, no matter how awful the heat is.

We'll continue to keep everyone updated as we go through Chemo these next 6 months. She has such a long road still ahead of her, but we are so grateful that we'll be able to do the next part from the comforts of home. So for now, scans and spinal fluid are clean. Counts are hovering in the 1200 range and oral chemo is around the corner. But the best thing is that my little girl - is home.



Wednesday, July 21, 2010

Change of plans

We arrived, unscathed from our road trip from Florida. It was pretty unevenful and Avery did great. We had to unpack the car...ok well Jeremy had to unpack the meticulously packed car at the hotel in Mobile as they had had multiple break ins in the past few days. Needless to say he was not happy. Then we arrived at St Jude and the Grizzly house was full so they put us back at the Target House. More room, but no maid service.

Avery had a full day of appointments today at St Jude. It was great to be back in a place that is so well put together, although it was a very long day. ANC came back at 1200 - so lower than when we left FL but not dramatically. She has grown an inch and is now 31.1 inches long and weighs 21 lbs. Avery met with the dentist and they scraped her teeth -- yes she had plaque buildup on those 2 bottom ones already. Who knew you were supposed to brush a baby's teeth 3 times a day?! He wants to continue following her as Chemo can affect children's teeth so we'll be back to see him in October. Her underbite and grinding of teeth are all due to stress and not fixable at this point...cosmetics later on I suppose.

Her MRI and lumbar puncture were this afternoon so we didn't get any results before the end of the day. We did however meet with our Nurse Practitioner regarding Avery's feducials and she consulted with Dr Boop (neurosergeon). They decided to take out Avery's feducials as they believe one of them is working its way loose. Normally they would not remove them, but because Avery is still so young, her skull is still soft and not retaining the screws as well as we'd like. Good news is that she doesn't need them anymore so good riddance! Unfortunately, this also means we have to have surgery on Friday to remove them. The plan is to be admitted at 7am on Friday at LeBonheur and she will have the screws removed and her hearing test done at the same time. Anesthesiology will most likely keep us over night so our plan to leave on Friday will be pushed back to Saturday.

Tomorrow we will meet with PT and Speech, as well at the eye dr before getting our results from the MRI and LP. Our Dr is on leave again -- go figure -- so we'll meet with one of the other Dr's to discuss the results. We end the day with a 4 hr behavioral test so we can see if Avery is still behind in development and if so, where. This test is done every year so they can measure the effects of the radiation and chemo. We had it done this spring as well to attempt to get a baseline for her. This is more like playtime for her, so it won't be as bad for her to sit through. Friday will be a long day as they require us to hang out in a hospital room to make sure the anesthesia doesn't have any strange effects on her. Seriously? She's been knocked out more times in the last 8 weeks than we could ever fathom -- I think we got this down. But whatever....those Anesthesiologists are in charge up there...we don't mess with them. To top it off, they have to have a fresh blood draw prior to surgery so she will get poked. Not really too worried about this as she is a trooper with shots but hates to be confined. In KC when this whole project began, they started a line in the ER and let me tell you -- she was NOT HAPPY about being wrapped in a sheet to keep her from moving. We are going to try to do it without that as I think that was her problem more than the poking!

Anyway, I better get some work done...It was strange being back at work last week, but it felt good to have some control back, well to at least think I had some control back in my life. We are really anxious to get done and get home....and to see everyone!


Sunday, July 18, 2010

The countdown begins...

The apartment is packed and we are counting down the hours till our journey back to Kansas begins. Avery has one last radiation treatment tomorrow morning followed by her goodbye party at the Proton Center. We'd like to leave before 1 pm so we can make it to Mobile, AL at a decent time. And yes, we made reservations this time!

Avery is doing really well and we are anxious to get her to St Jude for her scans and follow up tests. Although it makes us nervous, we know it will be followed with relief once we have the "scans are clean" verdict. (atleast until October when we do it again, and every 3 months after that) We managed to get follow up appointments with everyone - including the dentist, optometrist, and hearing dr. We will have 3 very long, jam-packed days at St Jude, but it will be well worth it if we are able to leave on Friday night.

Jeremy and I are so very thankful to everyone that has helped us in the last 7 months. Our employers have been imensley patient, flexible and supportive. Our friends have truly kept us going with their calls, and texts, emails and prayers, as well as their never ending willingness to mow our lawn, take care of the dog, clean my house, and take us to the airport. And of course our families, who have from afar worked so hard to make sure we had nothing to worry about other than Avery. To everyone - the three of us are so extremely blessed to have you in our lives. I'm not sure we'll ever be able to express our gratitude to all of you, although we'll probably spend alot of time trying! While we still have a long way to go on this road, it has been a lot easier to manage with the support of all of you. Someday when Avery is older and we get to tell her about all the people that love her so much - she will be amazed, much as we have been every day since Wednesday, December 30th, 2009. This will be even more confirmed for her by the gifts and cards that are piled in her room, all expressing their support for her.

On a high baby girl turns 18 months on Wednesday!

Jenn & Jeremy

Thursday, July 15, 2010

2 More Sessions Left!

Avery only has two more radiation treatments to go. She has done great with each session and the Doctors are very happy with how she is doing. Today is her last day of therapies in Jacksonville and she has made some big strides in all areas. The therapist have been really great with her and we are grateful for their help. We are going to look at her counts again tomorrow to see if they have gone back up. She needs them to stay up because she is going to start oral chemotherapy next week.
Jenn gets back here Friday night and that will be the last time either of us has to be away from here on out. It has been a long 7 months but we got it done. It has been nice being with Avery these last two weeks and I can't wait to get her home. I am amazed at how much Avery loves her life. She truly is the happiest little girl. Remember her party is on July 31 so we hope to see everyone there.

Saturday, July 10, 2010

Week at Home

I made it back to hot and humid Florida just in time! It is miserably hot here and I am reminded of why we live in Kansas City instead of Florida! Avery's counts are still at 700 so Daddy's birthday dinner was a little "to go" action. Needless to say we are hanging out low here in the apartment today as it is terrible outside. We had hoped to visit with the Parkers this weekend, but with her counts being low we decided that wasn't such a great idea. So instead we opted for saying goodbye to the purple Tinkerbell Chair as we shipped it home. Not sure what she is going to do without that thing for the next 2 weeks - man she loves it.

Avery's head is starting to turn a little red from the radiation so we've been given a cream to put on 3 times a day. She reaches back from time to time and I think it itches her, but she doesn't complain. She is doing well in therapies and they discovered we need to focus more on her upper body strength, or lack there of. She is still trying really hard and was not happy when the therapist started pushing down on her shoulders for resistance. She turned around and swatted her away, all while yelling at her -- Jeremy says it was hysterical.

I did fine while at home. The worst day was on Monday while I was home alone. Jeremy definitely had the raw end of the deal these last 6 months. It was good to be back at work, even though I don't feel like I accomplished a whole lot. It was helpful to have distractions after work -- so thanks to Nikki, Dan & Jacinda, Michelle and Monica for helping in that area. I did a phone interview with a Health Magazine this week and one of the questions she asked is how we dealt with things once it hit us. You know, I am not sure it has hit us. From day one we haven't had a whole lot of time to sit down and think about the situation in which we find ourselves. There has always been appointments, tests, scans, labs, therapies, Dr's visits, friends visits, laundry, feedings, updates, calls, a baby to take care of and everything else to do. There hasn't been a whole lot of time to sit back and think -- "oh my god this sucks - how are we ever going to get through this?" But I bet we will have that opportunity when we finally get home, course at that point it will seem kinda silly, considering the timing.

The weekend will go by all too fast I know but my light at the end of the tunnel is that this is the last goodbye we will have to say to each other for a long time. She has radiation this week and then on Monday of next week -- after that we drive back to St Jude and finish the week there. The hope is to drive back to Kansas City on Saturday, July 24th. Avery will start her oral chemo while we are in Memphis so cross your fingers there aren't any hiccups in that process.

Jeremy swears he will update the blog once this coming week, but he doesn't appear to enjoy it as much I do, so don't hold your breath. I will attempt to fill in the gaps later on. We need the prayers for her counts to come up as being under 1000 really puts her at a higher risk for getting off course. We are so excited to see everyone at the party....if I've missed anyone, please let me know.

Avery Welcome Home Party
Open House - Christiansen Home
July 31st
2pm - ?