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Thursday, February 25, 2010 - 2:42pm

Yesterday went about as well as we could expect.  Definitely much better than we anticipated.  Hailey was great for a large majority of the day.  She has been crying on and off since late yesterday when we got home because her port area hurts and she is getting used to it, but she really handled the overall experience very well.  Today she is already better than yesterday and doing more things on her own.  As the pain goes away, she will get back to normal it appears.  The port is in, she is on the mend, and the first treatment is done. 

Friday, February 19, 2010 - 2:38pm

Hailey will now be having her port surgery this coming Wednesday.  We coordinated it this way so that while she is under for the surgery, they are going to give her first round of chemo as well.  This will save us two trips to Madison in one week, and more importantly it will allow her port area to heal for a full week before she is accessed the first time while awake, but still keep us on the initial schedule of starting around the 25th.  So her first chemo treatment will be the same time as her port placement while she is asleep, and the second treatment will be March 4th as it would usually occur and then each thursday after for 1 year.

On a side note, Hailey has not fully recovered from the stomach flu this week.  She continues to eat very little (which always makes us nervous because of her weight).  Her stomach appears to still be bothering her at times.  Her school mentioned today that they have seen it drag on for a week with some kids lately where their stomach hurts after they eat or they don't really feel like eating much at all.  Lets hope she gets back to normal soon or all of a sudden we could have a low weight issue on our hands again.  So far, we are going on a good 3 days of very little food.  Brings back some memories we'd prefer to keep in the past!

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!!

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