ALL CLEAR

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

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

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

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

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

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

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

Jenn

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

Thursday

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

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

Jenn

Wednesday

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

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

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

Jeremy & Jenn

Avery's Worst Day

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

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

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

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

Jenn & Jeremy

Day 1 - St Jude

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

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

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

Jenn

Avery's Big Bash!

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

The Christiansen's

HAPPY 2nd BIRTHDAY MUNCHKAOODLES!

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

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

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

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

Jenn

Our Fighter - Our Hero

Avery Fall 2010

Elmo Live

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

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

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

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

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

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

Jenn

Back from the Frozen Tundra

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

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

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

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

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

Jenn

New Year - New Passing

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


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

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

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

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

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

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

Happy New Year everyone!

Jenn