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
Avery's Journey - Childrens Brain Cancer
Wednesday, June 1, 2011
Wednesday, May 25, 2011
A week and a half left
Sorry it's been a week since I updated...Last week seemed to go by a little quicker as we had Aunt Lindsay visiting and helping us out. Avery's treatment went well, although she was not very happy about having to sit behind a metal screen with Lindsay and talk to me. Once the injection is done, it is no longer safe for me to be close to her so a metal wall was brought into the room to divide us. All in all, we tried to keep contact to a minimum until Friday which meant a lot of seeing but not doing for me. Tough on both Avery and I, especially when she was tired and crabby. Lindsay was a trooper though and managed to distract her most of the time.
Jeremy is with her this week and it has been a tough week for him. I left on Sunday evening and he and Avery have been alone, other than an afternoon visit with Scott yesterday. I think daddy is running out of things to do in that hotel room. Today he took her to the Gray's Pappaya place on the west side of the park. This is the famous hot dog joint that you see in a lot of movies. She of course was not interested in the hot dog at all, but the banana smoothie was a hit. Tonight I'm sure dad has her watching the American Idol finale.
I leave again to go back to NYC on Saturday afternoon. Jeremy will return to KC on Sunday and then Nana arrives on Monday night to help us pack up and make it through the last week. Treatment will be on Wednesday instead next week due to the holidays -- cause of course hospitals are closed on holidays too....Seriously? It's almost as if they think bad things only happen to people M-F, 8-5. That means we can return home on Friday afternoon. It will be a long week I'm sure for the 2 of us as we pack up and await that flight.
We are very anxious to come home, but at the same time nervous about what that means. This is it. The plan is at an end. Now its a game of wait and see. We've never been to this point - we relapsed before we made it this far last fall. Now the scariness of what could be looms very close and very real in front of our minds. If we aren't working to make her better we feel like we aren't doing anything and that scares the crap out of us. Telling ourselves that its in the best hands possible, God's, makes me feel better for a few minutes and then makes me want to cry the next. As a matter of fact I am bawling right now and I don't think I can keep writing.... so I'm not going to.
Everyone has been incredible these last 7 weeks as we struggled to make it through this stage. We appreciate all of you so much whether we have gotten the chance to say it or not. I hope you all know that. Why this time was so much harder for us than the 6 months in Memphis and Jacksonville last year, we aren't sure, but thank you to the ones that brought food, made us dinner, took care of the lawn, took care of the dogs, kept us occupied when home, sent care packages, and prayed for us through it all.
We pray that everyone is safe and sound tonight - and that family and friends have all been accounted for here in the midwest. It's been a crazy couple of days. Another one of those times when you just got to kiss those kids and tell them you love them...
Jenn
Jeremy is with her this week and it has been a tough week for him. I left on Sunday evening and he and Avery have been alone, other than an afternoon visit with Scott yesterday. I think daddy is running out of things to do in that hotel room. Today he took her to the Gray's Pappaya place on the west side of the park. This is the famous hot dog joint that you see in a lot of movies. She of course was not interested in the hot dog at all, but the banana smoothie was a hit. Tonight I'm sure dad has her watching the American Idol finale.
I leave again to go back to NYC on Saturday afternoon. Jeremy will return to KC on Sunday and then Nana arrives on Monday night to help us pack up and make it through the last week. Treatment will be on Wednesday instead next week due to the holidays -- cause of course hospitals are closed on holidays too....Seriously? It's almost as if they think bad things only happen to people M-F, 8-5. That means we can return home on Friday afternoon. It will be a long week I'm sure for the 2 of us as we pack up and await that flight.
We are very anxious to come home, but at the same time nervous about what that means. This is it. The plan is at an end. Now its a game of wait and see. We've never been to this point - we relapsed before we made it this far last fall. Now the scariness of what could be looms very close and very real in front of our minds. If we aren't working to make her better we feel like we aren't doing anything and that scares the crap out of us. Telling ourselves that its in the best hands possible, God's, makes me feel better for a few minutes and then makes me want to cry the next. As a matter of fact I am bawling right now and I don't think I can keep writing.... so I'm not going to.
Everyone has been incredible these last 7 weeks as we struggled to make it through this stage. We appreciate all of you so much whether we have gotten the chance to say it or not. I hope you all know that. Why this time was so much harder for us than the 6 months in Memphis and Jacksonville last year, we aren't sure, but thank you to the ones that brought food, made us dinner, took care of the lawn, took care of the dogs, kept us occupied when home, sent care packages, and prayed for us through it all.
We pray that everyone is safe and sound tonight - and that family and friends have all been accounted for here in the midwest. It's been a crazy couple of days. Another one of those times when you just got to kiss those kids and tell them you love them...
Jenn
Sunday, May 15, 2011
Newest Title For Avery Anne
Avery has been described as a lot of things in her short 2 years. Most of them are things you and I are envious of....Rockstar, Amazing, Angel, Strong, Determined, Brave, Hero....but now she gets to add another very important one to the list. This is one she didn't have to do much for, but is very proud of nonetheless.
We are expecting a new baby in the the Christiansen family at the end of the year. This time we are shooting for south of Christmas, by about a week. Another Christmas Baby! I know we are asking for 2 miracles in a year, but I'm hoping we've been good enough the last year to deserve them both! Avery is well aware of where the baby is and when asked will promptly lift up my shirt and point to my belly. It's adorable, however can catch my chubby butt off gaurd at times. We are definitely in the tired and queasy phase of things but are hoping to be done with that by the walk on June 4th.
Speaking of the walk, I have a plan. I had a dream a few weeks back that we took a picture of all that came out for the walk standing behind Avery. Avery will be out front, blue glasses and a smile, in all her glory with her bling bling gold walker. This makes me giggle to no end and I sure hope that everyone that has been following our journey and supporting us will be there in that picture. What a fantastic thing to be able to give her for the rest of her life - a picture of HER TEAM. The ones that stood behind her the entire way.
Please join us on the 4th if you can - you can walk or you can come out for the hotdogs - either way, being there means the world to us. The walk begins at 8:30 am and goes through ealry afternoon. The park will be filled with all kinds of activities that day, so there will be plenty to do. Bring the kids, bring the neighbors, bring the dogs....Miss Jersey Anne will be in attendance sporting her t shirt. They will also have Team Avery bracelets for sale - something we never had thought to do before. More information can be found at the website at http://www.walkforavery.com/. We are really excited for this day - it marks a long year and a half completion of treatment, atleast for the time being and we'd like nothing more than to celebrate it with Team Avery. Hope to see you all there!
Questions about the walk? Contact Jacinda at jacindakloss.rlt@gmail.com
Thank you all for your continued support....we've almost made it to the break!
Jenn
Speaking of the walk, I have a plan. I had a dream a few weeks back that we took a picture of all that came out for the walk standing behind Avery. Avery will be out front, blue glasses and a smile, in all her glory with her bling bling gold walker. This makes me giggle to no end and I sure hope that everyone that has been following our journey and supporting us will be there in that picture. What a fantastic thing to be able to give her for the rest of her life - a picture of HER TEAM. The ones that stood behind her the entire way.
Please join us on the 4th if you can - you can walk or you can come out for the hotdogs - either way, being there means the world to us. The walk begins at 8:30 am and goes through ealry afternoon. The park will be filled with all kinds of activities that day, so there will be plenty to do. Bring the kids, bring the neighbors, bring the dogs....Miss Jersey Anne will be in attendance sporting her t shirt. They will also have Team Avery bracelets for sale - something we never had thought to do before. More information can be found at the website at http://www.walkforavery.com/. We are really excited for this day - it marks a long year and a half completion of treatment, atleast for the time being and we'd like nothing more than to celebrate it with Team Avery. Hope to see you all there!
Questions about the walk? Contact Jacinda at jacindakloss.rlt@gmail.com
Thank you all for your continued support....we've almost made it to the break!
Jenn
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