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Wednesday, February 17, 2010 - 8:43am

We finally told the girls what was happening last night.  Hailey took it like an oblivious 4 year old.  Faith cried.  We worked through it and in the end everyone was ok.  It went as well as it could I guess.  So we finally came to grips with the reality that it is here and time to start up again, we got ourselves and the kids mentally ready, we got all packed up and were totally prepared to face the morning and start the next phase of this journey, and...

Hailey got the stomach flu!! 

Unbelievable.  At about 7:00 last night she started throwing up and continued to do so deep into the night.  We had to cancel the surgery this morning and are rescheduled for Monday (the soonest we could get in again at this point).  As of now, we are still on track for starting treatment on February 25th.  She is still hurting this morning and has a low fever as well, but hasn't gotten sick again since late last night so hopefully she is over the worste of it (and no one else in the house gets it) and we will get back on track quickly. 

Monday, February 15, 2010 - 12:50pm

The registration is up and running for this year's Team Hailey 5k Run/Walk For a Cure!  Believe it or not, we are only about 2 months away from the event. 

As always, please check out the details and register on the EVENTS section of our website.  From our site you will be able to register online through active.com, or print out a registration form if you prefer to register by mail.  For those registering online, there will also be an option this year given to you in the registration process through active.com to set up your own personal fundraising/pledge page and send out information to your contacts by email, and get tax deductible donations/pledges securely and easily online that go directly to the PLGA Foundation (no need to collect money and bring checks to the event) and then track online how you are doing.  There is still the option to print out a pledge form as well for those who prefer to do it that way.  Regardless of the way you choose, pledges are a critical part of what has made this event so successful the last two years and helped us raise so much money for valuable research.  Again this year, for those who collect at least $100 in pledges, your name will go in a drawing for great prizes and giveaways.  

As always, proceeds from this event will go directly to the PLGA Foundation and 100% of that money will be used to fund research to find kinder, gentler treatments and a cure for Hailey's tumor type, still the most common form of childhood brain tumor.

We hope to see you all there.  Register early and please spread the word!!

Friday, February 12, 2010 - 12:15pm

Hailey's Port placement surgery was moved to February 17th.  Her first treatment will start February 25th.  We will be doing a chemo drug called Vinblastine once a week for 1 year.  Unlike last time, this will be every week (no breaks) unless we need to skip a treatment because of side effects.   We gathered many opinions from around the country over the last few weeks and while there is no clear cut answer, we believe Vinblastine to be the most reasonable and "safest" approach for her right now.  We will be doing frequent MRI's to be sure the drug is doing what we need it to do, and if it doesn't, then we have to decide between some of the other alternatives presented (other drugs, harsher potential side effects).  

We have not told the girls what is happening yet.  That conversation will be done sometime before wednesday. 

Hailey has also begun some regular work with a really good OT in the area on her sensory issues.  

The next year for us is likely going to be filled with lots of appointments of various kinds.  We hope Hailey can come through this treatment with little to no side effects and at least some shrinkage of the tumor, and with any luck and a lot of hard work, somehow also make real progress on her sensory issues. 

Friday, January 29, 2010 - 12:16pm

Port surgery will be February 15th in Madison.  Treatments would probably start the week after.