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
Avery's Journey - Childrens Brain Cancer
Wednesday, May 25, 2011
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
Wednesday, May 11, 2011
Good Day Of Treatment!
Avery did fantastic with her treatment on Tuesday! It was a long day but she did not get sick once. We can only hope that the rest go the same. As many problems that we have had I really think the Doctors here do want Avery to get the best care. They explained how the day was going to go and executed it nicely. I think Jenn has trained them well! Between St. Jude, KC, and Sloan we have some of the top Doctors in the country taking care of Avery and we have high hopes for her cure.
She continues to amaze me everyday with her strength. As soon as I think she has had enough she bounces back even stronger. I can't wait for her to show off some of that strength at the walk. We want to thank everyone for the work putting together the walk, the cards, packages, and most of all your prayers. Hope to see you on June 4th!
Jeremy
She continues to amaze me everyday with her strength. As soon as I think she has had enough she bounces back even stronger. I can't wait for her to show off some of that strength at the walk. We want to thank everyone for the work putting together the walk, the cards, packages, and most of all your prayers. Hope to see you on June 4th!
Jeremy
Saturday, May 7, 2011
Week 1 of Treatment
Week one of treatment was a tough one. The big day of treatment was on Tuesday and no matter how many pre meds were given, Avery was still sick. After they finally did the injection at 2 pm that afternoon, she became rather uncomfortable and sleepy. She then got sick prior to the scan, which of course scared off Anesthesia - resulting in a no go for the scan. I attempted to have them do the scan with merely her sleeping, but as we put her down on the table, she proceeded to vomit. Keep in mind she was not allowed to eat prior to this, so the only thing coming up was stomach acid. Poor thing was miserable. They told us that the first dose, although smaller, is usually the worst for them and they do much better with the consecutive doses. Let's hope that is the case cause this was a rough one for mommy to witness as well. Thankfully we had some company during the day so we weren't entirely alone.
The rest of the week was more of the same -- NPO, crappy scheduling, nothing on time, and a 2 year that was starving. Apparently adults forget how hard it is to entertain a 2 year old in a plain adult waiting room, who hasn't eaten all day. Needless to say - my patience ran out and some choice words were used to indicate my frustrations. Finally Friday came and we had a full day of nothing. Which is exactly how we spent it. We had some lunch and took a walk and then had dinner with Laura. Alex and Angie left for NJ and we watched a little tv together before going to bed.
Today we are anxiously waiting for Daddy to arrive! He should be here by 7pm tonight and I have a feeling the day is just going to drag. The excitement of NYC has worn off and been replaced with a longing to be home. This next week would have been our last week had we stayed on the original schedule. Instead, we are beginning week 2 of 5 weeks. Jeremy and Avery should have a fun week - no scans and no NPO except for Tuesday. And Uncle Glen is coming out to spend a few days and take her to a Yankees game! Funny enough, the Yankees are playing the Royals this week. Not sure what else they plan to do, but I'm sure it will involve food and fun for them all.
Avery has been on a roll in terms of moving this week. Lots of walking in her walker and she even got herself undressed and redressed (with very little help) today. Slowly but surely it is all coming together. We can't wait to get her back to KC and back in rehab so we can work more on the walking and talking. No new words to report yet, but any day I'm sure she is just going to look at me and a whole sentence will come out. Until then we will stick to Daddy, Ball and Jersey.
Jenn
The rest of the week was more of the same -- NPO, crappy scheduling, nothing on time, and a 2 year that was starving. Apparently adults forget how hard it is to entertain a 2 year old in a plain adult waiting room, who hasn't eaten all day. Needless to say - my patience ran out and some choice words were used to indicate my frustrations. Finally Friday came and we had a full day of nothing. Which is exactly how we spent it. We had some lunch and took a walk and then had dinner with Laura. Alex and Angie left for NJ and we watched a little tv together before going to bed.
Today we are anxiously waiting for Daddy to arrive! He should be here by 7pm tonight and I have a feeling the day is just going to drag. The excitement of NYC has worn off and been replaced with a longing to be home. This next week would have been our last week had we stayed on the original schedule. Instead, we are beginning week 2 of 5 weeks. Jeremy and Avery should have a fun week - no scans and no NPO except for Tuesday. And Uncle Glen is coming out to spend a few days and take her to a Yankees game! Funny enough, the Yankees are playing the Royals this week. Not sure what else they plan to do, but I'm sure it will involve food and fun for them all.
Avery has been on a roll in terms of moving this week. Lots of walking in her walker and she even got herself undressed and redressed (with very little help) today. Slowly but surely it is all coming together. We can't wait to get her back to KC and back in rehab so we can work more on the walking and talking. No new words to report yet, but any day I'm sure she is just going to look at me and a whole sentence will come out. Until then we will stick to Daddy, Ball and Jersey.
Jenn
Sunday, May 1, 2011
A week away
This last week was pretty rough on us as a family. Being away from each other was hard, but we managed. When I finally got to the house yesterday I found them on the patio and Avery wasn't facing me. When I got down in front of her she got the most amazingly beautiful smile on her face and I just crumbled. In a week, she has actually statrted to get hair. I could feel it coming in last week, but you couldn't see it. Now it's so obvious - and blonde as can be!
She had a great week with Daddy and Grandma, even though they had to sedate her 3 times. They went to Build a Bear and Ground Zero and spent a lot of time at the park. The MRI on Friday came back clear - which thrills us to no end. Keep in mind Avery hasn't had any chemo in almost 2 months. She was off of the high dose chemo and radiation for 3 months when she relapsed. Now they didn't do an LP last week, so we don't know whether or not cells are rebuilding in her fluid, but at this point she doesn't have any Tumor growth and that is excellent. We start the new treatment this week. She will receive a dose of the IO 3F8 on Tuesday morning and then have a scan 4 hours later, 24 hours later, and 48 hours later. While we have appts almost each day at the hospital, we are hoping to have some time to explore the city with our friend Alex and Aunt Angie. We promised to take them to the Ferris Wheel inside Toys R Us in Times Square. I am excited that she will have someone to play with this week. She desperately craves kid interaction.
Jeremy has a tough week ahead of him at home and we will be thinking of him constantly. He has a few chores to do to in the yard - so he should keep busy! There is a bird's nest in my wreath that hangs outside the front door and when I got home last week there was 3 blue eggs in it. By Thursday, they had hatched and are now teeny tiny baby birds. The year Avery was born, a robin built a nest in the corner of her window and we watched them all spring until they left the nest. Apparently we are good bird people - trustwhorthy. Or we are never home - so that helps too.
Well I see the eyelashes drooping....that's right -- I said eyelashes. They are about halfway grown out now. Still waiting on the eyebrows, but they will be blonde anyway. So I better get the nap underway. I hope everyone has had a chance to check out the walk information. We are so very excited for June 4th - it will be a much needed day of celebration. We have been going and going and going since Dec 29th 2009 - and this will mark the end of treatment - at least for now. We are so anxious to finally hit that mark and praying so hard that it is the end of treatment for her. It's been a long road for this 2 year old and she deserves a little break. I had a dream the other night that we took a picture of the entire crowd at the walk, surrounding Avery. Right in front with her blue glasses and bling bling gold walker - looking so proud. One day when she finds out that all those people came to see her, well I just can't wait to see her face. I hope everyone can make it. It should be a beautiful day for the Christiansen family.
Jenn
She had a great week with Daddy and Grandma, even though they had to sedate her 3 times. They went to Build a Bear and Ground Zero and spent a lot of time at the park. The MRI on Friday came back clear - which thrills us to no end. Keep in mind Avery hasn't had any chemo in almost 2 months. She was off of the high dose chemo and radiation for 3 months when she relapsed. Now they didn't do an LP last week, so we don't know whether or not cells are rebuilding in her fluid, but at this point she doesn't have any Tumor growth and that is excellent. We start the new treatment this week. She will receive a dose of the IO 3F8 on Tuesday morning and then have a scan 4 hours later, 24 hours later, and 48 hours later. While we have appts almost each day at the hospital, we are hoping to have some time to explore the city with our friend Alex and Aunt Angie. We promised to take them to the Ferris Wheel inside Toys R Us in Times Square. I am excited that she will have someone to play with this week. She desperately craves kid interaction.
Jeremy has a tough week ahead of him at home and we will be thinking of him constantly. He has a few chores to do to in the yard - so he should keep busy! There is a bird's nest in my wreath that hangs outside the front door and when I got home last week there was 3 blue eggs in it. By Thursday, they had hatched and are now teeny tiny baby birds. The year Avery was born, a robin built a nest in the corner of her window and we watched them all spring until they left the nest. Apparently we are good bird people - trustwhorthy. Or we are never home - so that helps too.
Well I see the eyelashes drooping....that's right -- I said eyelashes. They are about halfway grown out now. Still waiting on the eyebrows, but they will be blonde anyway. So I better get the nap underway. I hope everyone has had a chance to check out the walk information. We are so very excited for June 4th - it will be a much needed day of celebration. We have been going and going and going since Dec 29th 2009 - and this will mark the end of treatment - at least for now. We are so anxious to finally hit that mark and praying so hard that it is the end of treatment for her. It's been a long road for this 2 year old and she deserves a little break. I had a dream the other night that we took a picture of the entire crowd at the walk, surrounding Avery. Right in front with her blue glasses and bling bling gold walker - looking so proud. One day when she finds out that all those people came to see her, well I just can't wait to see her face. I hope everyone can make it. It should be a beautiful day for the Christiansen family.
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