long days, long nights

Well, as usual, unexpected things come up.  Normal is really not possible.  The nurse asked us today, if we are doing anything this summer, any long weekends away planned.  Sometimes I think they forget what they are dealing with.  It would be rather difficult to go anywhere for a long weekend.  Last night we made an unexpected trip to Children's Hospital Emergency Room.  Aly had been complaining about pain on her left side all day yesterday.  Last evening she spiked a fever of 101.3.  We are to call the clinic when any fever goes over 101.5.  I thought that was close enough.  Aly was pretty lethargic all day, she'd attempt to do something and would have to sit down mid way because she was so tired.  This not being the norm to this point, I decided to make the call.  We were told to bring her in for evaluation.  We got down there at 10pm.  By the time we got there her temp dropped a little to 99.6.  They did all the tests, checked for infections, checked blood counts, etc.  Her counts were really low, but no infections.  They took the cautious road and gave her a dose of antibiotics and some saline fluids as she is still occasionally vomiting.  They sent us home around midnight.  So, we got home at 12:30am.  Tom is taking part in the annual summer hockey camp and has to get up at 5:45am.  On top of that, Aly was also scheduled for an MRI, in Minnetonka at 8:30am, then a clinic appointment after.  So, once again, we had a long day.  We've been tinkering with her formula to see if that helps with vomiting.  We've been trying to figure out the continued pain.  She also had to have a dose of medicine that helps get the white blood cells producing.  What was to be a short clinic visit turned into hours.  Aly just wanted to go home and so did I!
We were told they wanted to do the MRI to make sure progress was still being made on the tumor.  They said that sometimes, the chemo does a good job on younger cells, but more mature cells then have room to grow more, so they wanted to be sure that was not occurring.  The MRI looked good.  The tumor continues to get smaller.  They are, however, still throwing in the possibility of surgery.  They just don't know at this point.  That decision will be made once her chemo is completed.  They will see what is left of the tumor.  The hope is that there will be nothing left and we will just be able to move on to radiation.  
I am finding it really hard to deal with the unknowns.  I'm a daily routine person.  I need schedules, things written on the calendar.  I need to know what to plan for.  I am not spontaneous, I don't like surprises unless it involves a lovely gift of some kind :)  This is tough.  Everyday it seems Aly has plans of something she wants to do, and everyday something comes up to spoil it.  I sure hope next week brings good things before she has to go in on Friday for the next round!  She is really craving attention from friends and is feeling lonely a lot of the time.  She'd appreciate a note, a phone call or a visit when possible.