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Saturday, May 8, 2010 - 5:28pm

No fever today.  In fact, the fever stopped yesterday around the time we were leaving the hospital and never came back again.  She went from a 101.5 fever out of nowhere to normal in a matter of about 4 hours.  We are perplexed to say the least, and sort of walking around in a haze today.  Yesterday was sureal.  We are just trying to reschedule as soon as possible.  The good news I guess is no more doctors for us today, but we need to get this surgery done and get back on track with chemo treatments.

Friday, May 7, 2010 - 1:11pm

It happened again!  Hailey has a fever so her surgery was cancelled.  She has had a cough off and on for the last couple weeks, but nevr any fever.  Yesterday her cough got worse, but she still did not have a fever even up through when we left for Madison this morning.  When we got there and they did her vitals and temperature, she had a fever of 101.5!  Surgery cancelled.  Because she has a port, any time they get a fever they need to get blood work and IV antibiotics to be sure it is not an infection in her blood related to her port, so we had to go down to day treatment and get her accessed and get that done.  We just found out her blood counts are fine.  The antibiotics are in so we are going home in a few minutes.  If she still has a fever tomorrow we will have to go in (either to Madison again or maybe locally) get her accessed, and get another dose of antibiotics in her.  The surgery will be rescheduled as soon as possible after her fever is gone.

Unbelievable!!!

Monday, April 26, 2010 - 9:47am

We didn't get the best news from Hailey's MRI last Thursday.  The swollen ventricle that first appeared on the last MRI has swollen even more so she needs to have surgery ASAP.  We are going to have an operation performed at UW on May 7th (the soonest we could get in) by the same neurosurgeon who did her biopsy 3 years ago.  He is going to perform an endoscopic procedure to create space in the ventricle area for the fluid to drain. He's one of the best in the country at this procedure.  This is a better and less invasive option than a shunt and hopefully avoids the need to have a shunt placed at all.  We are still learning more about this procedure, recovery time, side effects, etc, but at this point we really don't have a choice and the summary information we have indicates this is the least invasive option there is and should go pretty smoothly, relatively speaking.  She'll be in the hospital for a couple nights most likely and time will tell what the overall recovery process will be like for her.  This procedure is less invasive than a shunt and less invasive than the biopsy she had.

While she is under for the brain surgery, we've also made the decision to have a feeding tube placed again.  We are just unable to get the medicine and supplements she needs into her because of her extreme oral aversions.  We'll keep working on getting her able to take more things orally, but in the meantime we'll use the g tube to give her good supplements to help her during this chemo process, and the medicine we're using to help with the elevated growth hormone, and we'll be able to give her pain medication after the ventricle procedure (and anything else she might need until we can hopefully get her to take things on her own).  We're looking at it as temporary and talking with her about not letting it slow her down in any way, and still challenging her about the need to work on getting more used to trying things orally. Her weight is fine at this point (she eats a lot of what she chooses to eat) so it won't be the same as last time in terms of giving her regular tube feedings several times a day.  We will just use it for supplements and medications most likely once a day.

Also, the MRI did not show any shrinking in the tumor itself (which we didn't expect this early anyway).  Next MRI will likely be in 8 weeks to give us another feel for whether this chemo regimen is doing what we need it to do to the tumor.  Time will tell on that one.  At this point, however, even if the tumor shrinks the ventricle will not resolve on its own.  If this ventricle procedure works AND the tumor shrinks, the hope is the ventricle issue will not reappear, but now that it is swollen the only way to reduce it at this point is through a procedure like this or a shunt.

It feels like things are piling up in terms of the issues she has and we're losing a bit of a foothold on keeping her "normal" and status quo until something better comes along.  It's a slippery slope right now.  We know, and have seen with plenty of other kids, the direction this can all go.  Let’s hope we remain one of the "lucky" ones, relatively speaking. 

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.