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Monday, February 4, 2013 - 12:45pm

It's been a while since we've updated.  Mostly because we just haven't had much new or great news to report.  Hailey continues to have a challenging several months.  Really since July we have not been able to get back on any kind of sustained stretch of her feeling good every day.  She has good moments and bad.  She is still struggling to get through full days at school.  She does it most days, but ends up in the nurse's office and/or laying down, crying, sleeping, etc at school every day.  Her main issues continue to be her stomach hurting, as well as her head and her side on and off. The combination of these three things happen every day, with very rare exception.  She is also tired on and off throughout the day, every day. In addition, we've had some long and late night unexpected trips to Madison over the last few months to deal with issues.    

We're all just frustrated because this has been happening for several months now and no one is 100 percent sure why, although we have guesses and theories.  It could always be worse and we know that, and there are many kids in this situation who deal with as bad or worse for longer periods of time.  We were just "spoiled" early on because she always had been doing so well physically despite treatment and the tumor itself.  This is just the reality.

Again, we have some good moments, but this year simply has not been what we would wish for her.  The school staff are awesome and we have all been working together to try to help her get through the days and get the most she can out of them.  She is ultimately doing well in school and learning everything she should. She does have friends she likes and plays with at school and in the neighborhood. Her hair is growing back some and filling in again. It looks kind of cute.  She is also putting a little weight back on (she dropped to under 50 pounds over the last couple months but is beginning to climb again).

So bottom line, we continue to move along over here and are hoping things can turn for the better soon.  We are mixing in fun as a family, as a couple, and individually as much as possible.  Treatment continues for Hailey and will for the forseeable future unless MRI results dictate otherwise.  She is down to two of the three chemos now (Carbo and Temodar).  The other one (Vincristine) has been eliminated due to what we believe it's done to her stomach. Her vision does not appear to be getting any worse, maybe a little better.  Next MRI is next week.

Faith is doing well.  She continues in gymnastics and qualified for the state meet and nationals.  She's a hard worker and having fun with it at this point.  She's also working hard in school and loving the snow!  she's the only one in the family that gets really excited when we get a big storm!   

Monday, November 12, 2012 - 2:18pm

We had another MRI last Thursday.  Results appear to be same size or possibly slightly smaller.  We are staying on the same course of chemo for now and will do another MRI after the next round of chemo is completed in about 3 months.  At this point her vision does not appear to have gotten any worse since the drop this summer.  Her biggest struggle besides the side effects of chemo are the feelings of fullness she gets too soon into eating or drinking. This is leading to fewer calories than she needs in a day, and causing weight issues again.  We're working through the process to try to figure out what that is from and if there is anything we can do about it.  No answers yet.

On a good note, Faith had her first ever gymnastics competition this weekend.  She was so nervous the morning of but she worked through it and when it was time to perform for each of her events, she did GREAT!  She placed on bars, and was very close to placing on floor and vault, and all around.  For her first meet, she did awesome.  We're very proud of her work ethic and her willingness to put herself out there and work through the fear, and that she did well in the process.  

Monday, October 1, 2012 - 1:49pm

Its been a little over a month since we've updated last.  In that time we've been gathering lots of opinions and information about what to do next for Hailey treatment wise.  Long story short, we are staying with the second round of her current treatment (Carbo/Vincristine/Temodar) and doing another MRI in about 6 weeks and seeing what that tells us.  Hailey had an MRI a couple weeks ago and there is generally consensus that the growth of the tumor appears to be slowing or have stopped.  Instead of switching to another treatment that brings a list of concerns and possible long term side effects, we are sticking with this one and watching closely and hoping like crazy it starts to shrink the tumor as it did the first time she was ever on it over 4 years ago. To help save and maybe even recover some of the vision she has lost, we need this tumor to shrink and shrink fast!  It's not an easy or clear cut decision, but it's where we've landed for now. 

In the meantime Hailey is getting through her days at school and getting what she needs out of it for now and doing well performance wise.  The school system and the people there have been great and a tremendous help to us and Hailey.  She is having fun and enjoys 1st grade.  Faith is also really enjoying 3rd grade and has her first ever gymnastics meet coming up in November.  She's very nervous but working hard to do the best she can.  We're continuing to plug away over here and finding ways to mix in some fun in the process.  Thanks for all the thoughts and support as usual.    

Wednesday, August 22, 2012 - 4:13pm

I think we spoke too soon in our last journal entry.  Hailey continues to struggle with symptoms of we're not sure what, but most likely related somehow to how big her tumor has gotten.  She is gagging a lot throughout the day.  She feels full for no reason, even when she hasn't eaten anything.  Her sensory issues are worse than they've ever been.  And to top it all off, we confirmed yesterday that she has lost significant eyesight.  To this point she has amazingly always been 20/20 despite the location of her tumor, but with the size of the tumor now and the pressure it has put on the optic nerves, her eyesight has slipped fast. She could not even see some of the biggest letters from a distance yesterday, and even some defecits close up.  This is obviously very hard for us and her and has increased the urgency to get this tumor to shrink.  If we can get it to shrink and pressure relieves from the optic nerves, there is a good chance she would regain some or most or maybe even all of the sight she has lost.  The sooner pressure is relieved, the higher the likelihood of regaining.  Anyway, things sure have gone downhill fast for us over here in the last couple months in terms of the daily symptoms and issues this tumor can cause.  We've said it before, but we really have been "relatively" lucky throughout the last 5 years all things considered.  Many people out there have had it worse and we definitely recognize that. But things are definitely not heading in the right direction anymore, at least not at this time.  We have some more very difficult and unclear decisions to make.  Bottom line, this sucks!!!!! For her, for Faith, and for us and the family around us.