Well Nana and I finally arrived yesterday to a worn out Daddy and a very excited Avery. The terrible 2's may not have hit the Christiansen household but the tramatizing 3's have definitely shown up. She has figured out how to use her whine and get what she wants. Dad fell for it for 3 weeks straight and as a result Avery wore the same red pjs for 2 weeks. Poor daddy.
Not to worry... Mommy knows better and so does Nana. We did a little shopping today as someone has decided feety pjs are the only option. She also had to have twinkies for some unknow reason and she was not going to let it go. Sounds like Monday she has her second Sim MRI to double check her tumors before we start the boost rounds next week. So far she is still doing well... Tired mostly.
Jenn
Avery's Journey - Childrens Brain Cancer
Saturday, February 25, 2012
Saturday, February 11, 2012
First Week Done!
I made it to Memphis last night thanks to the Manders! The drive down is a long one and even worse on your own. I'm not sure how Jeremy did this every weekend 2 years ago. The sad part is we arrived last night at 7 pm and we will have to leave tomorrow around noon. Not nearly enough time for me.
We actually brought the cold with us and it is freezing down here. We are not excited about that at all. Luckily it appears to be a short lived cold blast that will be replaced by the 60's by mid week. Avery looks good. She's been eating well and they managed to bump her up in the schedule so that her sedation is ealier in the day. That helps us get more food in her for sure. At some point the eating will not be so good so we are trying to bulk up for when that happens. Jeremy says she's been very demanding this week. Honestly -- good for her - she deserves to be. He's learned that he leaves her bedside when they knock her out and then runs to get her the snack pack and pop tarts that she wants. She has been adamant about eating Jello and a poptart when she wakes up and is not deviated from the task for any reason. I think it's funny personally, but he is shocked at how bossy she is being.
Her hair is starting to come in from the Chemo....fuzzy head. It will fall out shortly but it's nice to see it again. Other than that, tiredness appears to be the only side affect showing up right not. Soon enough we'll see more I'm sure but for now its pretty quiet. She was very excited to eat breakfast this morning and she has so far put down 5 chocoloate pop em doughnuts. She still appears to be obsessed with the movies and has moved into a Care Bear stage with Sunshine being her favorite. Luckily I saw this coming and managed to find a 6 disc collection of the Care Bears so she has options.
Today we are going to give the Manders a tour of St Jude, so I will post some pictures later. I just realized that I really haven't done that before and most of you are probably pretty curious about what this amazing place looks like. Weekends are pretty quiet in terms of people at the hospital, but we'll get some good shots of this amazing place and where your good money is being sent if you are a Partner in Hope.
Thanks for all the continued support!
Jenn
We actually brought the cold with us and it is freezing down here. We are not excited about that at all. Luckily it appears to be a short lived cold blast that will be replaced by the 60's by mid week. Avery looks good. She's been eating well and they managed to bump her up in the schedule so that her sedation is ealier in the day. That helps us get more food in her for sure. At some point the eating will not be so good so we are trying to bulk up for when that happens. Jeremy says she's been very demanding this week. Honestly -- good for her - she deserves to be. He's learned that he leaves her bedside when they knock her out and then runs to get her the snack pack and pop tarts that she wants. She has been adamant about eating Jello and a poptart when she wakes up and is not deviated from the task for any reason. I think it's funny personally, but he is shocked at how bossy she is being.
Her hair is starting to come in from the Chemo....fuzzy head. It will fall out shortly but it's nice to see it again. Other than that, tiredness appears to be the only side affect showing up right not. Soon enough we'll see more I'm sure but for now its pretty quiet. She was very excited to eat breakfast this morning and she has so far put down 5 chocoloate pop em doughnuts. She still appears to be obsessed with the movies and has moved into a Care Bear stage with Sunshine being her favorite. Luckily I saw this coming and managed to find a 6 disc collection of the Care Bears so she has options.
Today we are going to give the Manders a tour of St Jude, so I will post some pictures later. I just realized that I really haven't done that before and most of you are probably pretty curious about what this amazing place looks like. Weekends are pretty quiet in terms of people at the hospital, but we'll get some good shots of this amazing place and where your good money is being sent if you are a Partner in Hope.
Thanks for all the continued support!
Jenn
Tuesday, February 7, 2012
2 down 28 to go!
Avery has done well for the first 2 days of radiation. Both days they were slightly delayed in starting due to issues with the kids ahead of her, but she was done by 3 each day. Jeremy said she was really tired today after. As you can imagine, being sedated each day can really wipe you out. She still has enough energy to run from me on FaceTime screaming " you can't get me!". As daddy chases her with the iPod and I yell " I'm going to get you.". It's all rather comical. Tonight she hid behind the corner and promptly counted aloud to ten before coming to find me on the iPod. Who knew she could count to ten? I have a sneaky suspicion she can do a lot more than we have seen...
Jenn
Jenn
Saturday, February 4, 2012
Moved
Well the week was pretty low key for us. We spent a few nights having dinner with the Parkers and celebrating Megan's continued NED news. On Friday we were moved into the Target House -- our old stomping grounds. They actually put us on the same floor, one apartment down from our previous apartment. It was crazy to see the amount of kids that have come through the Target House since we left. When we left in May 2010 we created a photo collage of Avery for the wall. She was the 3rd kid on the floor to put up a picture. There are now over 15 pictures up.
It's nice to finally have access to a kitchen so we can eat normal food and get away from the eating out. We went grocery shopping this morning and loaded Jeremy and Avery up with enough to get through the week. Avery will start Radiation on Monday. She is NPO until after the procedure so she won't be eating until lunch time or later each day. Skipping a meal is not going to help in our battle to fatten her up, but hopefully her appetite will stay up and we can feed her some high calorie items to make up for it. Once she has been doing things for a few weeks, her start time should be earlier in the morning so we may be able to eat breakfast afterwards.
I am dreading my departure tomorrow...leaving her here at St Jude seems very wrong to me. I was here for 4 months 2 years ago, thinking this will take care of it. We have some defecits to work through and a long lifetime of scans and disabilities, but it will be worth it. Never did I imagine we'd be doing it again...looking at even more deficits and the possibility that it won't work. We have a 50/50 shot of getting rid of this evil disease - it either will work or it won't. But regarndless of it working, we have a long line of medical problems that will accompany it. We laughed at the Dr when he said she might need hearing aides after radiation -- huh? We've had those for 18 months! Dial em up we said. Heart problems, growth issues, thyroid problems, necrosis...its not a pretty list of what we might see. But once in the place we are now - we've decided that all those things are worth it if we get to keep her here with us longer...
So please send out your prayers for Dr Merchant and his team to make the right decisions for her in the treatment plan and for the radiation to do what we need it to do. Please pray for small side effects in the next 6 weeks and strength for Avery and her body to endure this toxic treatment. We pray every night to our Jude, hoping that his little presence in Heaven is the reason Avery is still here fighting with us.
Jenn
It's nice to finally have access to a kitchen so we can eat normal food and get away from the eating out. We went grocery shopping this morning and loaded Jeremy and Avery up with enough to get through the week. Avery will start Radiation on Monday. She is NPO until after the procedure so she won't be eating until lunch time or later each day. Skipping a meal is not going to help in our battle to fatten her up, but hopefully her appetite will stay up and we can feed her some high calorie items to make up for it. Once she has been doing things for a few weeks, her start time should be earlier in the morning so we may be able to eat breakfast afterwards.
I am dreading my departure tomorrow...leaving her here at St Jude seems very wrong to me. I was here for 4 months 2 years ago, thinking this will take care of it. We have some defecits to work through and a long lifetime of scans and disabilities, but it will be worth it. Never did I imagine we'd be doing it again...looking at even more deficits and the possibility that it won't work. We have a 50/50 shot of getting rid of this evil disease - it either will work or it won't. But regarndless of it working, we have a long line of medical problems that will accompany it. We laughed at the Dr when he said she might need hearing aides after radiation -- huh? We've had those for 18 months! Dial em up we said. Heart problems, growth issues, thyroid problems, necrosis...its not a pretty list of what we might see. But once in the place we are now - we've decided that all those things are worth it if we get to keep her here with us longer...
So please send out your prayers for Dr Merchant and his team to make the right decisions for her in the treatment plan and for the radiation to do what we need it to do. Please pray for small side effects in the next 6 weeks and strength for Avery and her body to endure this toxic treatment. We pray every night to our Jude, hoping that his little presence in Heaven is the reason Avery is still here fighting with us.
Jenn
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