• Home
• Donate
• Store
• Journal & Photos
• Hailey's Story
• Events
• Guest Book
• In The News
• FAQs

See Our Photos

Sort Newest First or Oldest First

Sign-up to be notified of updates of our journal

Tuesday, April 20, 2010 - 7:07am

Hailey will be having her first MRI this Thursday since starting treatment again.  Lets hope we see no additional growth or swelling in the ventrical, or better yet, some slight shrinking.  Probably a little early for that, but one can hope...

Within the last month, we've had two successful fundraising events.  Last weekend we had the 5k as many of you know.  The numbers are not final as money trickles in for weeks after the event, but it looks like this year raised around $50,000 for the foundation!  It was an incredible day.  The weather was good, the number of participants were at an all time high (700ish) and once again we are inspired by all the love and support we and the many families out there like us (including local families as well) have received.  Thanks to all of you who sponsored, volunteered, coordinated, and participated in this event one way or another.  The difference you are making for families like us in giving us hope for a cure is immeasurable. 

Individual results of the race will be posted on the Team Hailey website soon in the EVENTS section near the bottom of that page under "report of past events." 

In March Aunt Dee and Uncle Dave also held the Bowl for a Cure in Winneconne.  It was a fun day and a good turnout that raised another roughly $3500 for the foundation.  Thanks to Dee and Dave and all who participated, sponsored, and volunteered for that event as well.  The girls had a great time bowling and playing with their cousins and family.

Wednesday, March 31, 2010 - 8:40am

The Brew House Expresso and Juice Bar in Appleton has committed to donating 5% of their sales between now and the run to the PLGA Foundation! 

Brew House Espresso & Juice Bar is a premier drive-thru for Alterra Coffee and other non-coffee drinks. They have 2 locations: 

3305 W. College Avenue, Appleton(a block or so off of 41 on the south side of College Ave)

134 W. Northland Avenue (in the parking lot of Gold's Gym)

Monday, March 29, 2010 - 10:06am

The Team Hailey 5k Run/Walk is April 17th!  Deadline to guarantee a t-shirt is April 5th.  Hope to see many of you there.

Hailey got her first chemo treatment of this new regimen on February 24th after her port placement surgery.  Since then, we have been going to Madison every Thursday for a weekly treatment.  After a couple weeks, her blood counts did drop below an acceptable level, so they were not able to give her the chemo drug that day.  Her counts came back up the next week to a high enough level and she has been on a reduced dose of the drug since then.  If her counts stay up on the reduced dose, we will try going back up to the full dose and see what happens.  As of now, we continue to go every week and will do so for 1 year straight if we stay on this regimen.  No breaks in this particular protocol.

Physically, I guess you could say it seems as if Hailey has been handling the treatments well so far.  She does not seem to be too affected in terms of day to day activities afterwards.  Her appetite has stayed good and her energy level seems about normal too.  The day after may be bringing a little more irritability than usual and she seems to tire out a little faster than usual right now, but all in all, things seem to be going ok so far with side effects and affecting her normal activities. 

The day of the treatment, however, has been very hard on her emotionally.  She really struggles from the time we arrive because she knows what's coming, to the time her treatment is done and the needle is out.  It's torturous to her and to us.  We end up having to physically restrain her when she is being accessed while she screams and cries and shakes, and throws up and yells at us.  It's heart breaking to watch her struggle like that and to be the ones who are "doing it" to her.   We know we don't have a choice and it is for her greater good, but try explaining that to a 4 year old, and one with intense sensory issues on top of it.  I think last week we came to the harsh realization that it is going to be a long year and there doesn't seem like much of a possibility she is going to handle the actual treatment process very well, no matter what we try. It seems to be getting worse each week.

We are also still trying to get a handle on Hailey's growth hormone issue.  So far the drug she is on is not doing what we need it to and it's very difficult to get it in her on top of it.  Not sure what is going to happen in this area.

Hailey also continues to go to occupational therapy each week in Appleton to try to help with the sensory problems she has, which is a HUGE factor in attempting to help her cope with treatments and daily life in general.  We've seen some minor improvements in some areas, but this is going to be a long process and none of us are sure what, if any, results we will ultimately get.  We're hoping.

Faith is doing well. She's thriving in kindergarten, continuing to do gymnastics, and growing up fast.  She's a good girl. 

We march on... 

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.