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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)

Hours of operation are Monday - Friday 6:00am - 6:00pm and Saturday 7:00am - 4:00pm

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. 

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!