35,831,521 Visits from family and friends!  

See Our Photos

Sort Newest First or Oldest First

Sign-up to be notified of updates of our journal

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.

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.

Thursday, October 21, 2010 - 8:49am

The first treatment on Tuesday went well all in all, and so far she has not had any issues.

Friday, November 5, 2010 - 1:31pm

We had our second treatment yesterday on the new regimen.  Hailey did pretty well all in all.  She was sick last night from it, however, which hasn't happened to her much.  After a pretty rough night, she did seem to bounce back to normal this morning and after a delayed start has been back to business as usual so far today.