Avery's Journey - Childrens Brain Cancer
Thursday, June 23, 2011
Reality
Just when we start to get comfortable in our new "normal" life, we are thrown back into the reality of the cancer world. Just because you leave hospitals, you stop chemo, or you finish a treatment - it never means you are fully done with this nasty business of cancer. We found out yesterday that another baby girl earned her angel wings from our SJCY07 Protocol family. While we had never met Sophia and her parents in person, we were well aware of the path they were on and the battle they were fighting. The feeling of safety that being home has provided, came crashing down around me as I read those fateful words.
Life will never be normal for us again - we know that. We are thankful every waking moment that our little girl wakes up with a smile on her face and poopy diaper. That she loves to get herself dressed in weird outfits and won't wear her hearing aides... that she won't eat anything but chips, sweets and mac & cheese...that she works so damn hard to walk, to talk, to move and that if I stick out my lip and pretend to cry, she will give me the best hug in the world so I feel better. These are the things that may challenge other parents, but to a cancer family, they are the closest thing to normal - and all they want. Just like that, things could be different. Losing one of our kids, whether we know them personally or not, hits very hard and very close to home. Sending us right back into the reality in which we never want to be in.
So as you pray for Avery tonight, please also keep Sophia's family in your prayers.
Thank you...
Jenn
Life will never be normal for us again - we know that. We are thankful every waking moment that our little girl wakes up with a smile on her face and poopy diaper. That she loves to get herself dressed in weird outfits and won't wear her hearing aides... that she won't eat anything but chips, sweets and mac & cheese...that she works so damn hard to walk, to talk, to move and that if I stick out my lip and pretend to cry, she will give me the best hug in the world so I feel better. These are the things that may challenge other parents, but to a cancer family, they are the closest thing to normal - and all they want. Just like that, things could be different. Losing one of our kids, whether we know them personally or not, hits very hard and very close to home. Sending us right back into the reality in which we never want to be in.
So as you pray for Avery tonight, please also keep Sophia's family in your prayers.
Thank you...
Jenn
Tuesday, June 21, 2011
Crisis Solved - Temporary Nanny Found
Thanks to a very user friendly website, Sitter City, I was able to locate possible nannies from the Shawnee area to interview in a rather short amount of time. We quickly interviewed the possibilities and offered to a recently graduated nursing student who spent some of her schooling at Children's Mercy. Great fit for us, so we are extremely happy. Taylor will be starting next week with Team Avery!
Nana came down on Sunday to save us until we found a temporary replacement so we've now added training to her lists of todo's as tomorrow she will take Taylor to rehab and show her the ropes. We have some concerns about Avery's eyes-- not her vision but her eyes. We've noticed she isn't looking directly at objects sometimes and it started after the surgery in April. We are hoping an evaluation will diagnose an issue with control or movement that can be easily remedied with some simple training, but we'll see.
Avery is doing great with therapy already. Lots of energy and a never ending desire to do it. She started speech therapy as well and we are already seeing a difference in her attempts to talk. MOM is not being said yet but it doesn't appear to be so far away now. We've reintroduced the hearing aids and she is slowly tolerating them more and more each day. An OT evaluation was done today and they found her to be right on track with her skills for a 2-21/2 year old. This means she's smart as can be but can't walk or talk...makes for tough dealings when someone wants something. Soon enough the speech thing will be here though and we'll just be left with the strength and walking to work on. She is such a strong girl - its inspiring.
Thanks to everyone for the great ideas and suggestions in finding a temporary solution for Sharon being out. We so appreciate it! Avery and Sharon miss each other terribly, but in a few short weeks I am sure they'll be back to being best buds again...Please keep Sharon in your prayers as we really need her to heal fully and be ready to rumble with a chatty cathy, mover and shaker in a few months!
Jenn
Nana came down on Sunday to save us until we found a temporary replacement so we've now added training to her lists of todo's as tomorrow she will take Taylor to rehab and show her the ropes. We have some concerns about Avery's eyes-- not her vision but her eyes. We've noticed she isn't looking directly at objects sometimes and it started after the surgery in April. We are hoping an evaluation will diagnose an issue with control or movement that can be easily remedied with some simple training, but we'll see.
Avery is doing great with therapy already. Lots of energy and a never ending desire to do it. She started speech therapy as well and we are already seeing a difference in her attempts to talk. MOM is not being said yet but it doesn't appear to be so far away now. We've reintroduced the hearing aids and she is slowly tolerating them more and more each day. An OT evaluation was done today and they found her to be right on track with her skills for a 2-21/2 year old. This means she's smart as can be but can't walk or talk...makes for tough dealings when someone wants something. Soon enough the speech thing will be here though and we'll just be left with the strength and walking to work on. She is such a strong girl - its inspiring.
Thanks to everyone for the great ideas and suggestions in finding a temporary solution for Sharon being out. We so appreciate it! Avery and Sharon miss each other terribly, but in a few short weeks I am sure they'll be back to being best buds again...Please keep Sharon in your prayers as we really need her to heal fully and be ready to rumble with a chatty cathy, mover and shaker in a few months!
Jenn
Friday, June 17, 2011
SUNDAY JUNE 19th - FUNDRAISER AT NOODLES OAK PARK MALL
Noodles & Co have graciously set up a day to raise money for Avery!
This Sunday they will be donating 25% of proceeds to the Avery Christiansen Fund for all the meals they sell that day. I know it's a big day for most...Happy Father's Day to you Dads...but if you have time to stop by and grab a bite to eat please do!
Noodles & Co is on the north side of Oak Park Mall
95th street & Quivira in Overland Park, KS
Open 10:30 am - 9 pm
The Christiansen's plan to head over after Church on Sunday for some lunch in case any of you would like to join us!
Jenn & Jeremy
This Sunday they will be donating 25% of proceeds to the Avery Christiansen Fund for all the meals they sell that day. I know it's a big day for most...Happy Father's Day to you Dads...but if you have time to stop by and grab a bite to eat please do!
Noodles & Co is on the north side of Oak Park Mall
95th street & Quivira in Overland Park, KS
Open 10:30 am - 9 pm
The Christiansen's plan to head over after Church on Sunday for some lunch in case any of you would like to join us!
Jenn & Jeremy
Wednesday, June 15, 2011
Week 2 of Being Home
Week 2 of being home was not as uneventful as we were hoping it would be. Unfortunately on Monday Sharon, the friend that spends her days with Avery while Jeremy and I work, slipped and fell on the stairs. This caused a very ugly break in her ankle that required surgery, lots of pins, and a really big cast. Needless to say, Avery's best buddy will not be around for the next few weeks while she recoups. Avery was extremely upset by this, but Sharon will be back so she'll get over it. Just another bump in the road I guess. The good news is that Sharon had some options in the fall and chose (thank God) to protect Avery's head while sacrificing her ankle. Definitely a rotten deal either way but it so could have been way worse. We feel awful that poor Sharon will be spending the summer attempting to itch through a cast!
In the mean time, we are conducting interviews for a temporary nanny to spend the next few weeks with Avery. She is working really hard on her PT and Speech and we are hoping to really start hearing her talk here pretty soon. She has "yeah" down pretty well now, but we are still waiting on "mom". It looks like we may be adding the OT sessions at some point as well so the kid will have a very tiring week of therapy...but a little hard work now means a lot more playing later....right?
Our goal this summer is to make it to Iowa and Minnesota for a visit. Both are places she hasn't seen in quite some time and we are hoping that we may get the chance to see many of you while we are there. The MN trip is planned for the 4th of July weekend. If you happen to be around that weekend - we'll be at Mom's in Burnsville hanging by the pool. Come on over and see us! The Iowa trip is not definite yet, but looking like August. We just heard today that they shut down interstate 29 due to the flooding so driving up now would be a bit of a struggle. Hopefully that will go down in the next few weeks and leave us wide open for a small town reunion in Underwood.
Avery is more than excited to be home. Her own bed, her own toys, her own dog -- all things she really missed. It seems like she has progressed so much in the last 2 weeks, when in NYC she seemed to stand still. I really hope that she continues to grow and discover the world around her now that she has a chance to be a kid again. We even went and had her ears pierced this weekend! She loves her "big girl" earrings and didn't cry when they got her. Maybe this will help us avoid the "oh what a handsome little man" comments we seem to elicit from strangers all the time. We return in mid July for a check up at Sloan Kettering. A short visit, but scary none the less. A short month from now, we'll be working on our scanxiety and asking you all for big prayers...something you do for us daily I'm sure. All of our St Jude friends appear to be doing excellent with their progress as well and that just adds to the relief we feel at this point.
We continue to live one day at time -- for the moment, taking it all in. So we appreciate the appeasement when we ask to do something now rather than in a few weeks...which reminds me, we need to schedule a date night soon. For now, we'll live in today and worry about tomorrow later -- so we don't have a nanny....it will all work out, if only you believe.
Jenn
In the mean time, we are conducting interviews for a temporary nanny to spend the next few weeks with Avery. She is working really hard on her PT and Speech and we are hoping to really start hearing her talk here pretty soon. She has "yeah" down pretty well now, but we are still waiting on "mom". It looks like we may be adding the OT sessions at some point as well so the kid will have a very tiring week of therapy...but a little hard work now means a lot more playing later....right?
Our goal this summer is to make it to Iowa and Minnesota for a visit. Both are places she hasn't seen in quite some time and we are hoping that we may get the chance to see many of you while we are there. The MN trip is planned for the 4th of July weekend. If you happen to be around that weekend - we'll be at Mom's in Burnsville hanging by the pool. Come on over and see us! The Iowa trip is not definite yet, but looking like August. We just heard today that they shut down interstate 29 due to the flooding so driving up now would be a bit of a struggle. Hopefully that will go down in the next few weeks and leave us wide open for a small town reunion in Underwood.
Avery is more than excited to be home. Her own bed, her own toys, her own dog -- all things she really missed. It seems like she has progressed so much in the last 2 weeks, when in NYC she seemed to stand still. I really hope that she continues to grow and discover the world around her now that she has a chance to be a kid again. We even went and had her ears pierced this weekend! She loves her "big girl" earrings and didn't cry when they got her. Maybe this will help us avoid the "oh what a handsome little man" comments we seem to elicit from strangers all the time. We return in mid July for a check up at Sloan Kettering. A short visit, but scary none the less. A short month from now, we'll be working on our scanxiety and asking you all for big prayers...something you do for us daily I'm sure. All of our St Jude friends appear to be doing excellent with their progress as well and that just adds to the relief we feel at this point.
We continue to live one day at time -- for the moment, taking it all in. So we appreciate the appeasement when we ask to do something now rather than in a few weeks...which reminds me, we need to schedule a date night soon. For now, we'll live in today and worry about tomorrow later -- so we don't have a nanny....it will all work out, if only you believe.
Jenn
Sunday, June 5, 2011
Missing A Camera???
I have a Kodak Camera that was left at the walk on Saturday. If it belongs to you -- give me a shout!
avery.christiansen@gmail.com
avery.christiansen@gmail.com
Avery's Walk
Avery's Walk was absolutely amazing! She had the best day, as did we, spending time with all of you that could make it. I can't imagine a more perfect way to to celebrate the end of treatment. It was a bit warm, we gave way too many sweaty hugs out, and we exercised way more than I ever should - but it was totally worth it to see all of you. Thank you so much to everyone for being there and making her feel every bit as special as she is.
A very special thank you to Jacinda and Therese for organizing the festivities for the day and for all the volunteers that helped with set up, clean up and everything in between! I didn't take a lot of pictures so I will post just one now, but once I have the others back from the photographer (Jeremy Arnold) I will put more up! Below is Avery and her buddy Easton -- both Brain Tumor fighters -- both heroes.
A very special thank you to Jacinda and Therese for organizing the festivities for the day and for all the volunteers that helped with set up, clean up and everything in between! I didn't take a lot of pictures so I will post just one now, but once I have the others back from the photographer (Jeremy Arnold) I will put more up! Below is Avery and her buddy Easton -- both Brain Tumor fighters -- both heroes.
Wednesday, June 1, 2011
Last Day of Treatment
Today was Avery's last treatment here at Sloan Kettering. It was a long day, but to our surprise, was filled with some much needed entertainment. Today was the PROM at Sloan Kettering and all patients, siblings, parents and Nana's were allowed to shop in the playroom for a ball gown, purse, hair piece, make up, nailpolish and corsages. You name it - they had it. Avery usually loves the girly stuff but the room must have been a little overwhelming as she was not happy about putting on her dress or looking at the jewelry. We finally man-handled her into the pink and black itchy garment and scooped up some accessories before heading out to the peace and quiet of the CT scan waiting room. She managed to calm down about the dress eventually and even started to take an interest in the headband, purse and jewlery we had picked out for her. After getting her pre meds we went down to the cafeteria where they had set up a "school gymnasium" prom, complete with a buffett line, balloon arch, and DJ. The kids were absolutely thrilled and although Avery was again overwhelmed to start, she eventually decided it wasn't so bad and took to walking around the dance floor trying to jump up and down like the other kids. Sadly, she did not take home the toddler tiara (this may have been rigged by the staff who thought her mommy was crazy) but she looked like an absolute princess to us.
After the Prom we went back up stairs to our bed to hang out for a while. We have officially moved into the obssessive DVD phase, in which she spends hours watching the same movie over and over. For the last 2 weeks she has been glued to The Little Mermaid. Apparently she went into complete meltdown last week when Daddy suggested Toy Story. I have had better luck this week and have actually seen 3-4 other movies, however I have also seen the Little Mermaid at least 13 times since Sunday. Whatever makes her happy - right?
Tomorrow is a big day of packing up and deciding what to leave behind. Our flight leaves around 11 am on Thursday and we hope to be home by mid afternoon. We can't wait! Then Saturday morning, bright and early we are so excited to see many of you out at the park. She has been working really hard on her walking these past few weeks and will be showing off her skills. We sure hope to see everyone there for a fantastic celebration of the absolutely amazing things this brave little girl has done in the last 18 months. She is so lucky to have the support system that she has and we hope she gets the chance to thank you all in person. Her hugs make you melt and her toothless smile will make it worth the drive. See you all Saturday morning ...
Going to Kansas City....Kansas City here I come...they got some crazy little women there and we are going bring one back home!
Jenn
After the Prom we went back up stairs to our bed to hang out for a while. We have officially moved into the obssessive DVD phase, in which she spends hours watching the same movie over and over. For the last 2 weeks she has been glued to The Little Mermaid. Apparently she went into complete meltdown last week when Daddy suggested Toy Story. I have had better luck this week and have actually seen 3-4 other movies, however I have also seen the Little Mermaid at least 13 times since Sunday. Whatever makes her happy - right?
Tomorrow is a big day of packing up and deciding what to leave behind. Our flight leaves around 11 am on Thursday and we hope to be home by mid afternoon. We can't wait! Then Saturday morning, bright and early we are so excited to see many of you out at the park. She has been working really hard on her walking these past few weeks and will be showing off her skills. We sure hope to see everyone there for a fantastic celebration of the absolutely amazing things this brave little girl has done in the last 18 months. She is so lucky to have the support system that she has and we hope she gets the chance to thank you all in person. Her hugs make you melt and her toothless smile will make it worth the drive. See you all Saturday morning ...
Going to Kansas City....Kansas City here I come...they got some crazy little women there and we are going bring one back home!
Jenn
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