Memphis Trips, Birthdays, and Dex

So I don't write any blogs for at least a week and half, and then in two days I do three of them....lolzzz  obviously had some passion stewing inside me, huh?  I promise not place any type of positions on this post regarding politics or naked barbies ;)  This is all about "being inside the Weber house".  Its quite interesting inside this house.  Unconventional at times, I'll admit.  Sometimes we should be nominated for parents of the year,other times, we give ourselves big fat F's for parenting.  Zach and I were reminiscing the other day about all of our failed parenting attempts.  We were laughing so hard, we were crying. None of the things we have done that have resulted in a grade of an "F" were intentional, they were just based on the fact that we are inexperienced.  Kinda like when we first became parents.  I bought "What to expect when you are expecting" and "What to expect the First Year", guess what I got out of both of those books?  Well...usually I'd be yelling to Zach "what the hell chapter covers this?  I don't remember reading anything about this in the books!"  ha!! I think nobody tells you about what its like to bring a newborn home because you'll never do it.  And I think you are so tired and forget about the first one, so you get pregnant with the second one, because if you remembered the hell and lack of sleep, you'd never have more than one kid.  hehehehe  And don't even get me started on nursing.  All I read in the book was how natural it was, and words like "latching" and "the let down of the milk".  Nobody told me anything about bawling my eyes out the first two weeks why I was doing it because of the pain and time it took. What the heck is natural about that?
So...as I was saying, this house is interesting.  We are learning all over again.  Having a child with cancer is like having a newborn.  We need a book..."What to expect when you get hit with the unexpected......and it sucks".  That's what I would name my book.
Our latest education came in the form of numbers.  We had been pretty fortunate in that Lucy's counts were pretty stable and predictable.  That was until we expected them to be stable and predictable.  Then they just went south.  Well, we headed to Memphis anyhow with an ANC of 380 (must have 500 to do lumbar puncture).  I wasn't comfortable with it.  I was afraid we would get there, and they would still be low and we would either turn around and come home...or Pui would make us stay until the numbers came up.  Then something happened.  We had a two day appointment schedule so we had to leave a day early and do a hotel half way.  And as I was taking a picture of Lucy, I noticed something.  There was a huge ring of light around her head.  She has had these in other pictures as well.  Not all of them, and with different cameras, same lighting, etc etc.  I call it her "friend".  Zach thinks I'm crazy.  But it hit me...the entire time her counts were low, I don't have one picture with that aura surrounding her.  I looked at Zach and said "she'll make counts, she'll be over 1000".  He said "Why do you think that?"  I said "because her friend is back".  Guess what....counts were over 1000 ;)  So we did get procedure at Memphis and she did great.  We also got a call on our way home that her spinal came back clear and perfect.  We needed that call.  We had to have so many in a row free and clear since she had a bad one a few months ago.  She now has 78 more weeks of treatment and only ONE spinal left with chemo.  That's right...just one left.  woo hoo!  After that one in March, we will go to Memphis every 16 weeks for spinals to just check and make sure there is no leukemia cells in there.  so we are almost to one milestone...yay!
We also celebrated a birthday this week.  Zach turned 30.  We had a much better party and time than last year.  Last year we were forced to celebrate a day early at the Ronald McDonald House, and Lucy was in the most intense phase of treatment.  It still gives me butterflies to think of that time.  We made sure we had great decorations and played games.  We had pizza and cake.  The kids had a great time, and it was nice to celebrate at home.
And last but not least....we just got through another dex pulse.  UGH those are horrid.  The first day was horrible because Lucy just cried and cried for no reason.  We couldn't comfort her in any way.  She just had to go to her room for 45 minutes and cry.  Then after that, it got a little better.  She still eats a lot, but it seems as if its not as much as before.  She eats out of boredom.  The thing that kills me about the dex pulses is how horrible she feels.  She gets vincristine at the same time and that is the chemo that causes her the most pain, so the dex intensifies that. She doesn't understand and quite frankly, I don't know how to explain it.  She lays on the couch most of the time and has "dex" eyes.  they are dark sunken in eyes.  She doesn't sleep well.  But....we made it through another pulse!!  yay!!
We are on week 42 of treatment and at week 69 she goes to 1/2 dose of dex, and at week 100 no dex..so every pulse down gets us closer to our goal.
Whew!  that was a lot of typing the last few days...sometimes we get so busy I forget to keep you all updated so sorry to bunch it all into two days.  Well, I'm off to see what else comes up in our household that is unexpected....
PS...we did have an unexpected ER visit.  Lucy hit the corner of her eye on an end table JUST as Zach and I were walking out the door for a date last Friday night.  She is fine...and the only thing that was hurt was her pride.  We forgot to grab White to take to the ER with us...that was what crushed her.  She ended up with a nice shiner..we tried to teach her to that when people asked what happened to tell them "You should see the other guy".  She wouldn't.  She told them the truth...she said I was doing something I wasn't suppose to.  And we went on our date!!  We told her nice try to keep us home, but she'd have to come up with something a bit more serious next time  :)  I told you were weren't right sometimes....:F for empathy on that one...ha