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Saturday, January 30, 2010

Chemo Day 8 -- Stalled

Avery was to begin Day 8 of Chemo today, however the Dr's decided to push it back a day due to a low count on her Nutrifils. The concept is still a little over my head, but the basic idea is that her Nutrifils were 1000 yesterday morning and then at 2 am they had dropped to 400. By 8:30 they were only up to 500. This could be due to her UTI and Stomach Bug so they wanted to give her an extra day to build back up before they wipe them out again. This of course messes up the entire day count in my planner as they simply push "day 8" back a day. Needless to say, I need whiteout now.

We waited for this evening to venture down the road of milk products, but as of 9:30 pm Avery has successfully not puked after a bottle. YEA!! This chemo tomorrow however will put us back in full on puke patrol. At this point, I am winning with only one puke while Jeremy is lagging with 2.

Tomorrow is going to be tough. She will be getting 3 different chemo drugs which will affect her pretty dramatically. Please pray that they aren't too bad...this kiddo could really use a break from this past week. She sure misses all her buddies, family and friends..... XOXO (The video is from my cell phone and I never hold it the right way - sorry)

video

Friday, January 29, 2010

Dehydration

Thanks to the wonderful bug that made it's way through the Christiansen clan....we are now worried about dehydration. Dr's are slightly nervous that she hasn't had a lot of urine output in the last 24 hrs. This of course is due to the fact that she spent a majority of that puking on her parents. Yes, the score is now Daddy 2 Mommy 1 -- in this case me being the winner. I think we did 3 loads of laundry last night purely for pjs....I did not pack enough to make it past 4 pukes! Good news is she doesn't seem to mind the puking. We finally called the dr last night after the 3rd time and she indicated that when someone has a bug like this the body is not so receptive to lactose products. Hmmm.....that would explain her puking up the PediaSure and Formula for the last 3 days!! She is now drinking PediaLyte and water only. Dumb us.

We had an ultrasound done today on her kidney's just to make sure everything is working right. They also hooked her up for fluids for 30 mins and will hook her up again tonight when we go back in for days 8-12 of chemo. All in all she looks great and is acting fine and so far has not puked today.

On the up side....it is freezing rain today. Target House is 4 miles from the hospital and all staff were let go early of course -- can anyone say dejavu? (this was the case in the KC hospital as well -- weather or holidays) And one last topper for the day is Avery is teething. Are you kidding me?! The kid has 2 teeth -- got them at 6 months, and right now is when the others decide to join us? Thank the Lord this girl is a tough one!

Jenn & Jeremy

Thursday, January 28, 2010

Stomach Bug... Part 2

It's official...they are all 3 sick now. Seriously, just what they needed on top of everything else, right? Please pray that this passes quickly. Avery was discharged last night, so they have been trying to get some rest at the apartment. She goes back in for her second dose of chemo tomorrow, so we're crossing our fingers that they all wake up feeling better as they begin their next in-patient stint.
Jenn's mom, Kristie, is still taking volunteers to go down to Memphis and help Jenn out with Avery's care while Jeremy is in Kansas City working. Just wanted to let you know that if any of Jeremy's friends plan to go down to help, we'll schedule you so that your time overlaps when Jeremy will be there, so that you can spend some time with him as well. Please email Kristie at kristieg@bsp-mail.com if you are able to make the trip. The support for Jenn will be so important, but this will also provide Jeremy with some peace of mind that his girls aren't alone when he isn't able to be there.

Wednesday, January 27, 2010

Stomach Bug

It's Nikki again...just wanted to check in quickly and let you all know that it appears a stomach bug has hit Jeremy and Avery. The good news is that explains why Avery has been sick to her stomach and it should resolve itself soon. The bad news is, well obviously, Jeremy and Avery both feel pretty crappy.
Please pray that this bug is short-lived and they are both feeling much better soon, and that Jenn is able to avoid picking it up.
Both Nana Kristie and I have had the chance to "talk" to Avery on the phone over the last day. She's just like her mama...loves to chat! Mostly she is just thrilled that Jenn is letting her have the phone, but we'll take those giggles and squeals as indication that she's missing us!

Tuesday, January 26, 2010

It's me....Jenn

Nikki has been doing such an amazing job of updating this blog over the last few weeks....I hate to take over and ruin all the great progress she has made, so in no way will I truly commit to taking this on full time quite yet. On the other hand, I'm sure she has a lot on her plate with her working full time and taking care of her little boy Harper, among other things so I will try my best to relieve her of this task.

We'd like to say thank you to each and every one of you that have followed our story and sent prayers, thoughts, well wishes, food, care packages, and love our way. We are so grateful to you all for caring so much and being so supportive. Up until New Year's Eve, the hardest thing we had ever done was have Avery -- yes with an Epidural, but it was still tough!! Never in a million years would we have ever thought something like this would happen. Lucky for us, we have each of you to lean on as we go through this amazingly tough situation. Avery is a very fortunate little girl with a lot of cheerleaders in her corner and for that we are truly blessed.

Phase 1 of her first round of Chemo started on Saturday -- she flew through the 24 hr meds like a pro and was laughing and playing the entire weekend. It wasn't until Sunday night when she threw up for the first time (ever)that we considered it might be a little more complicated. She continued to get sick again in the morning and afternoon yesterday and started running a fever yesterday afternoon. The Dr's are at a loss as to what is causing the fever because her white blood cell counts aren't affected by this particular drug, so for now they are looking at a possible stomach virus. She threw up again last night a few times as well, but so far today has not. She also managed to drop the fever last night and is not running one at the moment. The plan is to be discharged from the hospital at some point today. Please cross your fingers that the plan doesn't change.

We will try to post some additional pictures in the coming days....thank you so much for all your support!

Love,

Jenn, Jeremy and Avery

Sunday, January 24, 2010

A Few Pictures




Just a few pictures of Avery from the last week. She's doing great. Jenn says she is refusing to sit still and acting more and more like herself, so that is wonderful to hear. She also seems to be doing good with the chemo. Please pray that she continues to do well and doesn't get too sick.

Saturday, January 23, 2010

Great News Yesterday

The MRI yesterday showed that the tumor was likely completely removed. It's nearly impossible for them to tell for sure, but the doctor is confident it's all gone. This was wonderful news. There a couple of spots that they will keep an eye on, but nothing that is overly concerning. They also found NO cancer cells in her spinal fluid, meaning it hasn't spread there! Also amazing news! These 2 pieces of information paired with the new pathology results they got on Thursday, have led the doctor to classify Avery at an intermediate risk level. Now, this doesn't sound all that great, but considering her age, this is great news. It's nearly impossible for a kiddo Avery's age to be classified as anything but "high risk" with the kind of cancer that she has. The fact that he has put her in the intermediate risk group means that he knows what we've known all along, Avery is going to fight and beat this.
They admitted Avery last night and started her on fluids. Today she will start chemo. This first chemo drug will be administered constantly over a 24 hour period. She will spend the next 3 days after today getting "helper drugs." These will help Avery recover from chemo. They will then discharge her and they'll have a couple of days to "relax" at the Target house. There are appointments and labs every day, so it's not really relaxing, but at least they are able to have some normal family time outside of the hospital. She will be readmitted on Friday for her 2nd round of chemo.
Now that they are at the Target House, there is a mailing address. We've decided for the safety of the family, we aren't going to post their address here. If you would like to send them something, please just send me an email and I'll be happy to share it with you. Unfortunately, in this day and age, you just can't be too safe.

Friday, January 22, 2010

Kansas City Benefit-Texas Hold'Em Tournament

There will be a Texas Hold'Em tournament,silent auction and raffle to benefit the Avery Christiansen Fund on Saturday, February 20th at Noon. This event will take place at Wil Jenny's in Overland Park. The address is 6700 W. 135th Street.

The buy-in to play in the tournament is $50. The tournament prize will be a very nice Kansas Speedway package! We would like to get an estimate of how many people will be in attendance, as space is limited, so please reply ASAP to let us know how many of you, your friends and/or family would like to participate! Please send an email to Deana Behrndt at: sjmizzou@aol.com if you would like to attend this event. If you have questions or would like to help out with an item for the silent auction just let us know!

Thursday at St. Judes

This is actually an email sent from Jenn last night...

"Started the day early only to get halfway through the prep for the MRI and find out they had not identified the material used in the clips placed in Avery's head during her initial resection surgery....because they were not certain what type was used, St judes was unable to do the MRI -- very cautious on this side. So the whole morning was shot and Avery had to wake up from the sedation with no results. I got a lesson in flushing and changing her lines -- the St Judes way....needless to say very different from they way it was taught to us in KC. Tomorrow I take a test on it...then we take a test later on changing the dressing on her boob tube. Who knew I was in nursing school?

Talked with the Dr and he said their pathologist report came back....they found that the tumor is not Anaplastic....according to the path report from KC it was. Bottom line -- not as aggressive as they had thought. Good for us. We will have a full day tomorrow with MRI and other tests and we should go in for inpatient starting tomorrow. The plan is to give her fluids all night Friday followed by her first round of Chemo on Sat. She will then be in the hospital until Tuesday. She will be discharged for a few days and then be readmitted on Friday again for days 8-12, different drugs this time. Then she will have periodic chemo through day 15 that is pushed daily through a syringe rather than an IV.

That's about it for today.....hopefully the MRI shows a complete resection and no other issues.....keep em crossed!!

Jenn"

So, please pray that the MRI shows that KC did, in fact, get all of the tumor!

Now that they are getting settled in and have a better idea of what the treatment protocol will be, it's becoming clear that Jenn is going to need some help for 3-5 day blocks of time after the 15th of February when Jeremy has to come back to Kansas City to work. Caring for Avery is a 2 person job right now, and on top of that, Jenn is just really going to need someone to lean on when Jeremy can't be there with them. The plan is to arrange a schedule of people to be there with them for these blocks of time from Mid-February through August when they get to come home to Kansas City. We will have a better understanding of exactly what the need will be once Avery has gone through a couple of chemo treatments, but we would at least like to start getting an idea of how many people will be able to go and what times would be best for those people. Jenn's mom, Kristie, is organizing this, so please email her at kristieg@bsp-mail.com or kristie.gustafson@comcast.net and let her know when you might be able to go.

Tuesday, January 19, 2010

First Day at St. Judes...

I spoke to Jenn tonight and all is well. They arrived in Memphis today around 2 and got Avery checked in. They met with Dr. Armstrong, their oncologist, and he seems to have almost instantly eased some of their fears. His attitude is really positive and exactly what Jeremy and Jenn needed.
Tomorrow will be a big day for them with many appointments. Actually the whole week is going to be busy. Tomorrow they start appointments at 8am. They will meet with a neurologist, nutritionist, social worker and have labs drawn. Thursday is Avery's first birthday! She will start the day off with an MRI and spinal tap, but they are planning to get away from the hospital in the afternoon to do something fun to celebrate. Friday they will give Avery fluids to hydrate her and the plan is to begin chemo on Saturday.

Benefit Information

There will be a benefit in Neola, IA at St. Pat's Hall on February 13th. There will be a dinner and silent auction at 5PM, a live auction at 7PM and a dance following with live music by Chasing Daylight.
Anyone wishing to donate items for the auction should contact Heather Davis at 402-659-6848 or heatherdavismch@gmail.com. You can also contact Rob and Carol Leaders at 712-566-2045 to help with the fundraiser.
I know that many of you following this blog will not be able to attend the benefit in Neola on the 13th, but what you can do is make a donation to the Avery Christiansen Fund by going into any US Bank and asking to make a deposit into this account or sending a check to: US Bank, PO Box 100, Underwood, IA 51576. There will be a financial need over the course of Avery's treatment, so please donate what you are able to on a monthly basis. What seems like so little to us as individuals, will collectively have a big impact on reducing the stress level for Jeremy and Jenn.
Their trip to Memphis is going well. Avery is being a content passenger and they should arrive at St. Jude's around 2 and have their first meeting with the oncologist at 3.

Monday, January 18, 2010

A Night At Home

Avery was discharged today, right on schedule! She had her last dose of antibiotic at 3. It takes about an hour to run, and they were on their way home before 4:30. I think Children's Mercy was very conscientious of the fact the Christiansen family was ready to get out of there!
Tonight they are at home trying to enjoy some time as a family before they take off for Memphis in the morning, but mostly just packing. Jenn said that Jeremy had informed her the car was already full and she hadn't even given him her or Avery's clothes. You all know Jenn...she has enough clothes packed to fill the car with those alone. (That's not a bad trait, by the way, I LOVE to travel with Jenn because I know whatever I've forgotten, she has most definitely remembered.)
They will be traveling most of the day tomorrow and will be busy getting Avery admitted and getting settled into the Grizzly House. The Grizzly House will be their temporary home until they are moved into the apartment they will have at the Target House. Tonight I'm so happy for them because I know tomorrow will be the first day they will spend in the place that his going to make Avery better. I'm sad for myself though because I hate that I won't be able to hug my bestie whenever she needs it and kiss her baby whenever I need it.
I ask that you all pray that their travels are safe and that Avery is comfortable and happy for the trip.
Also, I heard tonight that someone received their order from Cafe Press, and it wasn't exactly right. The onesie was printed in black and red, rather than black and pink and they sent a men's t-shirt rather than a women's. The good news is that they called Cafe Press and they were more than willing to send out corrected items without even having the other items returned. If you have any issues with the products that you have ordered, please shoot me a quick email at nikki.pealer@gmail.com I would like to keep track of it, so that I can address the issue with Cafe Press if this turns out to be anything other than an isolated event.
And, speaking of your Team Avery gear...please send me pictures of you in your shirts. I'd like to do some posts of everyone in their shirts. I think it will be so neat for Jenn and Jeremy to see all those who are supporting their little fighter! And how cool will it be for Avery to see all the pictures when she grows up?!?

Sunday, January 17, 2010

Recovering Nicely

Avery is recovering like a champ from her latest surgery. She was a little less cheery yesterday than she had been Friday night, but that's probably because the meds had worn off and she was a little sore. She still gave us a few smiles though and was very content sitting in Grandma Janette's lap when I was up there.
She ran a low-grade fever yesterday, which of course was concerning given the events that preceded her last shunt placement, but the doctors weren't concerned and assured Jenn and Jeremy that it was a typical post-op, low-grade fever. I'm headed up there in a little bit, and I hear she's feeling much better today.
The plan is still on track to discharge her tomorrow afternoon after she gets her last dose of antibiotics at 3. They will go home and spend the night, and then begin their trek to Memphis early Tuesday morning. The staff from St. Jude's has given them very detailed information as to what to expect when they get there, which has done wonders for easing their anxiety.
I know many people are wondering where they can send things once they get to Memphis and what items would be helpful. Right now we don't know what the address will be, but as soon as they get down there and get settled we will get that information on the blog.

Friday, January 15, 2010

Surgery Is Done

Avery is out of surgery! The shunt is in and she is recovering nicely. She's drowsy, but doing great. Jenn and I were joking this morning that hopefully this will be her last surgery until she's 80 and needs a new hip!
Thank you so much to everyone who has ordered their Team Avery merchandise and/or donated to the Avery Christiansen fund. This generosity is taking a tremendous weight off of Jeremy and Jenn's shoulders. I'm working on adding a few items that have been requested to Miss Avery's Store. I'll update when I get those in, definitely before the end of the weekend.

Surgery This Morning

Avery is in surgery as I type this to get the shunt put back in. Please pray for her and her medical team, that this procedure goes smoothly and that she recovers quickly.
I saw her yesterday and she had improved so much over the last several days. She is playing, and giggling and smiling and overall just being the darling, perfect little girl that we're all so in love with.
I will update again when she's out of surgery.

Wednesday, January 13, 2010

Care Conference

Jenn and Jeremy had their Care Conference this afternoon with the team at Children's Mercy that has been treating Avery. They got many of their questions answered and there is now a plan in place. The plan is to do surgery Friday morning to put the shunt back in. Provided Avery recovers as expected and there are no complications, Avery would be discharged on Monday. They would be able to drive her to Memphis themselves at some point next week. Maybe they could even spend a night at home for everyone to sleep in their own beds! I know they are anxious to get down there, but I think it would be so nice for them to get one normal night at home before they start the next leg of this journey.
One of the main questions that they had for the doctors today was Avery's neurological recovery from the surgeries she's already had and the surgery that will happen on Friday. She is doing a much better job of opening her eyes and tracking objects and people, but she isn't where she was before the surgery. She is also less vocal than she was before the surgery, which is a common side effect of brain surgery. Doctors are unsure what causes this side effect, but they are confident she'll be jabbering away again someday. The timeline just isn't certain, but with the progress she's already made, they know she's going to do great.
If everyone could please pray that there are no hiccups between now and Friday, that they are able to get the shunt put back in as planned, that Avery will recover well and be able to be discharged on Monday and that the family will have a safe trip to Memphis.

Tuesday, January 12, 2010

Miss Avery's Shop Launched!

Many, many people have been asking how they can buy t-shirts, and also how they can help Jeremy and Jenn get through this difficult time. Now you can kill 2 birds with 1 stone. The profits from anything you buy on this site will go directly to the Avery Christiansen Fund. You can get super cute products and help the family all at the same time! Here is the link to the store:

http://www.cafepress.com/MissAverysStore

The Avery Christiansen Fund has been set up with US Bank. There are several options to donate to this fund. 1. You can go into any US Bank location and tell them you would like to make a deposit to the Avery Christiansen Fund and they will be able to assist you. 2. You can send your donations to: US Bank, PO Box 100, Underwood, IA 51576. or 3. You can set up automatic bill pay through your on-line banking. You would need to put "Avery Christiansen Fund" in the memo and in place of an account number, you can use the PO Box for the Underwood US Bank.
The treatment plan will likely mean 6 months in Memphis for Avery and Jenn, and frequent travel back and forth for Jeremy. It will be such a blessing to them if we can all do whatever we can to help financially over the course of Avery's journey. The last thing that they should have to worry about throughout all of this is money. So, I am asking that you give whatever you can on a monthly basis to this fund. Any amount will be a huge help to them. I'm hoping that we can raise enough money each month to help them cover their expenses, plus help Jeremy to fly to Memphis a couple of times a month rather than making a weekly 7.5 hour drive. Any travel time that can be saved will give him a few more hours with his wife and little girl. As you can imagine, that will be the most precious gift we can give them.
There are also a couple of benefits being planned in Jeremy's hometown. More information will be posted on those events tomorrow.
On a medical note, Avery is doing great today. She has remained fever free for another day! Waa-hoo!!! This is incredible news and means that the antibiotics are successfully treating her infection. Jenn and Jeremy are anxiously anticipating their Care Conference with all of the doctors treating Avery tomorrow. This will be the meeting that determines an exact plan of action to get the shunt put back in and transfer her to St. Jude's. I will be sure to post the outcome of that meeting just as soon as I can tomorrow.

Monday, January 11, 2010

Today Avery's fever seems to be under control, so that is wonderful news! She did a great job with her physical and occupational therapy and entertained everyone with some more of her giggles. Right now the plan is to put the shunt in on Friday, and then discharge her on Monday so that they can head to Memphis. They still don't have all of the logistics finalized as far as how they will get there, but hopefully a solid plan will be in place after they have a meeting with all of the doctors on Wednesday. It ultimately will all depend on what is best for Avery. They may need to take a medical flight, an ambulance, or they may be able to drive themselves.
The treatment plan has also not been finalized, but what is certain is that they will spend an extended period of time there- likely 6 months. There protocol will include intense chemotherapy followed by focal radiation. Then they will come home and do 6 months of oral chemotherapy. Right now the plan is for Jeremy and Jenn to both go, with Jeremy coming back in February when his business picks up and Jenn will stay with Avery. Their jobs have both been incredible through this. They are doing everything possible to make sure that Jeremy and Jenn are focused on the only thing that is important right now: Avery.

Sunday, January 10, 2010

Weekend Update

Overall, this has been a good weekend for the Christiansens. Avery is starting to show her cute little personality again little by little. She started smiling and giggling at her mommy and then her daddy last night and she continued to do more of the same today. Talk about great medicine for everyone in the room when she lets out a laugh! There is simply no better sound in the world right now than an Avery giggle.
Both Jenn and Jeremy got out of the hospital yesterday, which was much needed for both of them. Jenn went to lunch with some girlfriends and Jeremy went home to shower and then to a friend's house to eat pizza and play Wii with the guys. They both seemed at least a little refreshed last night when we left. Hopefully now that Avery is feeling better we will be successful at getting them out of there a little bit more often.
Avery had a fever again today and her white count is back up. Right now they controlling the fever with Tylenol and keeping an eye on her. It is concerning that the fever has not resolved since the surgery to remove the shunt on Friday. Please pray that the antibiotics kick in soon and help her to beat whatever this infection is that is causing the fever and elevated white count.
It sounds like the plan will be to keep Avery in Kansas City through this week. They will likely do surgery again on Friday to put the shunt back in and then let her recover here through the weekend before moving her to St. Jude's next week.

Saturday, January 9, 2010

Another Rough Day and a New Plan

Yesterday was another rough day. They were not able to get Avery's fever down, and after deliberation by the doctors, and the consult of a infectious disease doctor, it was decided that the likely cause of the fever was a hospital acquired staff infection that likely originated from the shunt. So, a quick decision was made that the shunt needed to be taken out, which meant Avery's third brain surgery in one week. It was a quick procedure, and she was recovering well last night. When the shunt is not in, they have to put in an external drainage tube that works with a machine to keep the level of fluid in her brain where it should be. Jeremy and Jenn really hate this because it requires that she be laid flat most of the time. It must be clamped off to have her in any other position and can only be clamped off for 15 to 20 minutes at a time, and only a couple times a day. This means that she can only be held twice a day. So, on top of everything else they can't even hold her as much as they would like to, so as Jenn would say, "that's just irritating." The bright spot of the day was that she smiled and even giggled when they were playing Peek-a-Boo with her. She is opening her eyes a lot more and looking for her mommy and daddy.
The new plan is to get Avery transferred to St. Jude's Hospital in Memphis, Tennessee. This is the best hospital at treating pediatric brain cancer. While the children's hospital in Kansas City is a good hospital, they have only treated one kiddo under the age of one with the type of cancer that Avery has. They just do not have the level of expertise to make Jenn and Jeremy comfortable with the treatment they would provide. They are working with St. Jude's to coordinate the transfer. An exact timeline is not known at this point given the events of yesterday. I know that they would like to get her there sometime next week.
It would be great if you all could pray specifically that the shunt was the problem and that this infection will resolve with antibiotics and that they are able to get her moved to St. Jude's quickly.

Friday, January 8, 2010

Team Avery T-Shirts

I know there has already been some interest in ordering Team Avery t-shirts. We don't have them available quite yet, but I'm working on it. I will post information on how to buy the shirts as soon as I have the details worked out. It's amazing to me that within an hour of posting the logo and mentioning it would be cool to make shirts, people were already lining up to buy them! Jeremy, Jenn and Avery are truly blessed to have so many people loving and supporting them right now.

Avery's Logo

Not even a year old and she already has her own brand...now that's impressive! Erin at www.betweenthesheetsco.com was so sweet and offered to create a little logo for Avery, AND did it one day! Thank you so much Erin! I envision this is going to go on t-shirts, magnets, bumper stickers, heck maybe even a billboard! OK, maybe not a billboard, but you get the picture. We're going to do everything we can to show our support for Miss Avery as she fights and BEATS this!
Yesterday was a better day for Avery, so in turn, also a better day for Jeremy and Jenn. She did a great job in physical therapy and was more alert throughout the day. Please pray that the days continue to get better and that they can get home soon. Jeremy and Jenn haven't left the hospital in a week and everyone can imagine how grueling that is on two people who are already going through so much.

Thursday, January 7, 2010

Looks Who Is Feeling A Little Better!


Avery's fever is currently down and she decided that she'd even hold her bottle herself! Right now she's sitting in a chair getting some physical therapy. What a tough cookie!

Wednesday, January 6, 2010

Fighting a Fever

Sorry for being so late with a post today. Jenn and Jeremy have had a very busy day of meeting with doctors and trying to get to the bottom of what is causing Avery to have a fever. She's had a fever between 103 and 101 for most of the day. They did a spinal tap to check for infection. So far everything looks good, so right now the doctors are not overly concerned. They are going to wait a few days to culture it, just to be sure.
Jenn noticed last night that Avery's face looked a little puffy so a resident came in and found that her belly was distended. They did a scan to make sure the shunt wasn't draining into the wrong spot, and it wasn't so that was a blessing. She just has some gas she needs to pass and she needs to poop. (Parents out there will get that poops are something to be celebrated with little ones. Non-parents will likely think I'm just weird to be discussing such topics.)They are giving her some medicine to help with both of those issues, and hopefully she'll get some relief soon.
They also did a cardiogram today to ensure that her heart was functioning as it should after her surgeries. It is, so another blessing. They are keeping an eye on her lungs, just to be sure that the sacs are properly inflating when she breathes. Right now she struggling with that a little but as she cries and moves around more they are confident it will resolve itself.
Avery's primary oncologist is on vacation until next week because she's getting married. This means the on-call oncologist is handling Avery's care right now. Lets just say her bedside manner wasn't the greatest this morning and well, Jenn made it clear that wasn't acceptable. So, after a few stressful hours, the doctor came back ready to sit down and talk through some of their questions. Jeremy and Jenn feel better tonight having some answers. They now know what kind of a tumor it was and will formulate a plan to treat it after their oncologist is back next week. In the meantime, the focus will be to get Avery recovered from the surgeries and back at home.

Tuesday, January 5, 2010

Out of Surgery!




Avery is out of surgery! All went well and she is taking a little nap.

Quick Update

I just wanted to let you all know that Avery is currently in surgery. She should be about done and then will spend an hour in recovery before they take her back up to her room. They decided this morning to go ahead and put in a Hickman Line while they had her in surgery. This line will allow the doctors and nurses to draw labs, so no more sticking and pricking sweet Avery all the time. She'll greatly appreciate that! It will also be used to administer the chemo when they get to that point. The pathology results are not in, but we're still hoping to hear something today. I will update again when she's out of surgery, but wanted to let you all know where things stand now.
On a lighter note...Nana Kristie found the fabric for Avery's first birthday outfit today and it's adorable! Hot pink and black polka dots and the most adorable little skull and crossbones...the skulls even have heart shaped eyes and little pink bows. So fitting since skull and crossbones are the new official Team Avery logo. Tough Girl=Touch Logo. Can you even imagine how much this little girl is going to be spoiled on her 1st birthday??? It's probably going to be criminal, but I can't wait!

Monday, January 4, 2010

Surgery Again Tomorrow

They did the CAT scan this afternoon and have determined that Avery will need to have the shunt to help her drain the fluid from around her brain. They will do the surgery sometime tomorrow morning. This is a relatively routine procedure, but stressful for Jenn and Jeremy nonetheless. Avery is a tough girl, and they know she'll be fine. Honestly, it's probably as hard on them as it is on her. Today was a rough day for them, so please continue to lift them up in your prayers as well as Avery.
They hope to have the pathology results tomorrow so that a plan can start to be formulated on how best to beat this. You all know Jenn...when faced with a problem, find a solution and FIX it! She's in that mindset now, and it will serve her baby well. Watching she and Jeremy come together as a team has been an inspiration. They love each other and Avery very much.

Out of the PICU!

Miss Avery was moved out of the PICU last night! It's a much larger room, so it will at least be more comfortable for everyone. She's also been eating since Saturday night, so that is making her a much happier camper. She has been having some trouble keeping it down though, so hopefully that will turn around soon.
Now that the holiday weekend is over they are sending out the biopsy and hopeful that someone will be able to analyze it today and hopefully give them some results tomorrow. They also have an MRI scheduled for tomorrow. They will be looking at the level of fluid around the brain. When the tumor was there, it was acting as a plug that was keeping the fluid from draining. Now that the tumor is gone, the brain has to learn again how to regulate that fluid level. Right now there is an external drainage tube that is controlling it. The MRI will show the doctors if her brain is able to do it on its own, or if she needs some help. If she does need help, they will need to do another surgery to put in a shut that will drain that fluid from around her brain down to her stomach. Please pray that the MRI shows that the fluid is draining properly on it's own so that Avery doesn't have to go through another surgery.

Saturday, January 2, 2010


Just one picture of Avery from today...getting some Pedialyte from Daddy.
Hopefully they'll let her have some formula tomorrow. She's hungry, which is a great sign! She's feisty too! Let me tell you, she does not appreciate being messed with right now and she's not shy about letting you know. That's our girl! Notice the skull and cross bones blanket. It's always been one of her favorite blankets, but it's giving her some real street cred with the doctors and nurses. They know she's one tough cookie when they see this blanket.
They did another MRI today and it showed that they did get all of the tumor, so that was wonderful news. They are hoping that she'll move out of the PICU and back to the Oncology floor tomorrow. The rooms are much bigger up there and the amenities are better for mom and dad, too. Speaking of Mom and Dad, I know you're all wondering how they are doing too. Of course they are doing amazing. They are being so strong and Avery is blessed to have them as her parents.

Where We Are Now

This is Nikki, a friend of the family, and I'm going to do updates until Jenn and Jeremy are able to get Avery home and have the luxury of computer access. They have limited cell phone service in the hospital, so that paired with the fact that they are focused on being Avery's support and advocates right now, makes it difficult for them to answer calls and return text messages. They are so appreciative of everyone's concern and prayers and this blog will be a great way to keep everyone updated as they venture on this unexpected journey.
To date, this is what has happened. Jenn and Jeremy noticed that Avery was a little unsteady and seemed to be getting more and more clumsy, (sounds pretty typical for an 11 month old, right?) When they were at Nana's house for Christmas she noticed it seemed to be a bit more than typical toddler clumsiness. Their daycare provider and another close friend also noticed that something seemed a bit off, so they got her into the pediatrician last Tuesday, December 29Th. They expected to be told she had an ear infection. The pediatrician recognized that Avery's head had grown quite a bit since her last appointment- she had gone from being in the 50% percentile for head circumference in October to off the chart, which ends at the 97% percentile. They wanted to get Miss Avery in for an MRI right away, but the MRI center at Children's Mercy was already closed for the night. They were sent home and told they would receive a call the next morning to let them know when to go in for the MRI. As it turned out, an MRI wasn't available, so they scheduled them for a CAT scan on Wednesday morning, the 30Th. During that procedure, they found that Avery had a tumor that was 4cmx7cm on the back of her head. It was on the portion of the brain that controls coordination, which explained why Avery was having difficulty controlling her movements. The doctors explained that the first step was to get the tumor out and scheduled surgery for Thursday morning, the 31st. They admitted her to Children's Mercy Downtown and began the process of prepping her for surgery and did an MRI to get a better picture of the tumor. The surgery was a success. The surgeon is confident that he was able to remove all of the tumor. They will be doing another MRI today to be sure that it's all gone.
The next step will be to meet with the oncologist when the pathology results are in next week, hopefully on Monday. Once they know what kind of a tumor it was, they will be able to give Jeremy and Jenn more information on exactly what the next steps will be. They have prepared them that Chemo is likely going to be necessary.
Avery is an incredibly strong kiddo. She is going to amaze us all over the course of this journey and she will no doubt make us very proud over and over again. Right now what the family needs more than anything is your prayers. Thank you so much for checking in on Avery and I'll do my best to get daily updates posted so that you are all in the loop. I plan to go to the hospital later today, so hopefully I can get some pictures of the little sweetheart up soon.