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Friday, October 15, 2010 - 8:46am

Hailey is 5 years old today!

We gathered feedback from around the country again and met with our oncologist in detail yesterday, and long story short we have decided to switch to a drug regimen called Avastin/Irinotecan.  Its a biologic drug (Avastin - cuts off the supply to the tumor) and a chemotherapy (Irinotecan).  This is a treatment that is relatively new for cases such as Hailey's.  The good news is there have been very positive results with this combination.  The scary thing is there is no long term data to tell what this drug does to kids down the road.  In the end, however, when we weighed the real options at this point in detail, this drug combination was the lesser of 3 evils based on Hailey's current situation ALL things considered. 

So we start Tuesday in Madison with the first treatment and will continue every other week for at least a year if she is tolerating the treatment and it is working.  We are also continuing to explore whether Proton pencil beam radiation is a realistic option for her at some point in time if needed. We've sent all her information to MD Anderson and are awaiting a consult with them.  This is not something we would do right now, but we want to at least know if it is a good next option for us to consider.

Friday, October 8, 2010 - 1:43pm

More bad news.  The results of the MRI yesterday show that the tumor has grown even more and there is also a cyst inside the tumor that is becoming more prominent.  We need to decide on another treatment, with unfortunately no great or obvious go to option available at this point. Just a short list of drugs that may or may not work or don't have enough data behind them to know anything for sure, or both. Hailey's oncologist is gathering feeback between now and Thursday, as will we, and then we're all meeting Thursday to make a decision on a new treatment, which would likely then start the following Tuesday.  We'll update when we know the next move.

Thursday, September 16, 2010 - 2:48pm

Where to start?  Once again, it's been a while since we've updated.  It's getting harder and harder to get ourselves to put these together regularly.  Hard to explain I guess. 

First, it is worth noting we have a couple golf outings coming up in early October.  Shannon and i will of course be attending both and look forward to seeing any of you there that will be able to attend one or the other.  Please check the EVENTS section of our site for more details if interested.  

I also wanted to give a congratulations to Adam Zimmerman and Pete Speers for completing the Ironman Triathlon in Madison last weekend and for all their efforts related to making the PLGA Foundation their special cause throughout the process.  Congratulations to those guys and thanks so much for your efforts!

So it's been over a month since we decided to stick with the current round of chemotherapy and things are going well so far when you weigh it all out.  The true test will come with Hailey's next MRI, but we've managed to work her back up to the full dose of chemo each week, and we have not missed a week for quite some time, and she is handling it very well from a side effect standpoint.  Hopefully the consistency and the increased dose, combined with more time on the treatment in general, will produce some shrinkage evident in the next MRI. She continues to function very well day to day.  She's still doing everything a normal 4 (5 on Oct 15th) year old should do and she's been doing a little better in the area of her aversions and sensitivities.  She's also gained some pretty decent weight over the last couple months, only to lose some of it while she was sick last week with the stomach flu and a virus, but she's gaining little by little again.  All in all, she really continues to do pretty well and there are no signs at this point that the growth of the tumor is affecting her in a way that would change our treatment yet.  We are very lucky so far as these cases go...we know that.

Hailey continues to be in her pre-k type program at the same childcare center.  She loves it there and loves her teachers.  They are also such a blessing. She has about 4 cds worth of fun, modern "religious" songs memorized and loves to play them loud at home and sing.  Could be much worse.  She is also surprisingly good with technology for a 4 year old.  She knows how to work half the things around here better than we do.

Faith is now a happy first grader.  She loves it so far.  It is such a relief to see her enjoying school and thriving in general.  She's a good big sister and a joy to have around.  If you see her soon, you'll notice she's sporting the toothless first grader look.  She is about to have both front teeth gone.  It's funny.

So next MRI is on October 7th.  We'll update again after, hopefully with some good news!  Thanks for continuing to follow the site and for those of you who continue to post messages in our guestbook.  We appreciate you all.


Thursday, July 29, 2010 - 9:12am

We met with our oncologist yesterday and after gathering feedback from other physicians around the country and weighing all the information, we are sticking with the current treatment for another 3 months and re-evaluating after the next MRI.  There were several factors in this decision, but one of the big ones is there just is not a clear cut next option.  Everything else out there has higher risks, toxicity, or unknowns, or a combination of all of them.  There have been cases where the chemo she is currently on (Vinblastine) has shown growth early and then shrinking.  We can't say we're totally comfortable with this decision, but we are doing the best we can right now with the many unknowns involved in this situation.  We will be watching her closely the next few months for signs that the tumor is getting bigger and causing complications.  If we see anything like that, we will probably have to take more risks and move to something else sooner.  We're in very scary territory now.