Wednesday, October 26, 2011

10/23/11 Disney on Ice

Adam has been feeling well and blood counts are near normal, so we took the kids to Disney on Ice "Treasure Trove" with the Wilhoits on Sunday.  We had bought the tickets over the summer, so I am glad we were able to go.  It was a really good show, actually.  Josh complained about the voice over, of course, but how many people can sound like Mickey Mouse and skate?  It made us realize also how much of a blessing it is to do fun things like this.  Just because you bought the tickets doesn't mean you get to go!  You have to have the transportation and the health.  Luckily, we have the health on our side right now!  The kids got to dress up too (well, the kids who wanted to. Not over Adam's dead body will he put on a costume - unless a glow necklace counts?).  Check out Rachel's shoes - she was very proud!

Makena and Rachel
So, wanted to attach a couple pics of the good times.  Don't let Adam's expression fool you.  He loved the show.  Did not love the picture taking, as usual :)

Saturday, October 22, 2011

10/22/11 Lucky Number Three

Adam's clinic yesterday was the beginning of Phase Three.  Doctors continue to report good news.  Phase three is called "interim maintenance" (maintenance is the phase Adam will be in after March for the rest of his therapy, and the time where life goes back to "normal."  You know, like tee ball, eating out, and Sunday School :).  Therefore, it should be another easy month!  He no longer needs to take chemo at home.  The only pills are the Bacterim which are only on the weekends to prevent pneumonia.  His injection yesterday was through the metaport, so no more lumbar punctures for a couple months!  Very relieved to get a break from that.  And clinic appts went from every 7 days to every 10.  So, all around, the load is lightening until December.  Unfortunately, we go back to intensification right around Christmastime, but we'll worry about that when we get there (Matt 6, once again).

A little worried about flu season approaching.  Josh has already gotten his flu shot.  Rachel and I get ours in a week.  As I type, we are at cousin Andrew's 5th birthday party!  Happy "Cinco de Cumpleanos" to my nephew, Andrew (I made that one up)...  I am concerned about the finger food, popcorn maker, and all the kids sweating in the bouncer, but he is happy, so we'll wash hands 100 times today, and hope for the best!  Kids at his age self regulate.  I even found Rachel, queen of the chaos, in the other room laying on the carpet in the fetal position because she needed a rest.  Adam has created a "angry birds" game out of blocks, so we have that ready if he needs a break too :)  In the meantime, Papi brought homemade guac, beans, and rice.  It is officially a party!  And life is good...

It's been a busy couple days with Uncle Jason's college friends in town from Maryland.  They have two boys, 7 and 4, and all the kids played together for almost 48 hours straight!  And I'm not talking video games and movies. Tag, rollercoaster, pirates, bike riding, ball games, you name it!  It was so fun to watch.  And we always have a great time when Steven and Allison are here :)  Not to mention the weather...  You can never convince me that October is warmer than June, but it always seems to be the case!  80 degrees today!  It was 65 degrees at Rachel's "waterslide" birthday in mid June.  Praise God for the sunshine.  I really think the activity and being outdoors is helping Adam rebound.  Party on!  

Monday, October 10, 2011

 For some reason, it is easier to find time to write when life is tough than when times are good.  Adam is good.  We are good.  But here is an update of our progress the last two weeks. 

Two Fridays ago was Adam's second clinic in Phase 2.  He reports to the clinic to get his metaport accessed so the anesthesiologist can administer the "sleepy milk."  This is a narcotic that basically knocks Adam out completely.  They do this because they have to administer an injection of  chemo in the spinal fluid.  Fridays usually take at minimum four hours.  One hour is in the clinic, one hour waiting for surgery, 40 min to check in for surgery, 20 min for the actual procedure, and one hour in which Adam has to lie down after surgery while the anesthesia wears off.  This Friday, though, he needed a blood transfusion because his platelets were down at 7.0.  That took about 4 hours, but Adam slept most of the time.  His energy was totally zapped from losing the red blood cells.  Nothing concerning though - just part of the process.

It's funny how indifferent we are becoming to the chemo already.  We are down to the one pill a day before he goes to bed.  I finally set an alarm on my phone because we never remember!  Then, right before we go to bed, "did you give Adam his medicine?" "no, didn't you?"  Crap.  So, we have to wake him up 2+ hours into his slumber to swallow a horse pill.  We use the alarm now. 

Last Friday was the same drill.  Check in, blood pressure, temperature, weight.  Chatted about the disappointment in the announcement of iPhone 4s instead of the 5g (what is "s" anyway?).  Dr. Beach comes to check in.  Nothing really to discuss because we're just in the routine.  She was pleased that the last bone marrow aspirate they did showed absolutely no cancer cells.  We kind of already knew that, but I will listed to that again and again - it's nice to hear.  Then nurse Courtney comes to access the line.  We are rushed upstairs because our appt is in 5 minutes, but I know better than to expect an in and out kind of morning.  We wait in the 2x2 room for another hour while a nurse checks us in, another nurse confirms we know why we are there and what the procedure is, the anesthesiologist checks in, and finally, we see the surgeon.  The worst, I mean WORST part is having to stand with Adam while he goes to sleep.  I end up in tears every time.  I hate seeing the medication take control of his body like that.  If at any point in this whole process Adam has looked weak and helpless, it is when he is injected with that stuff.  Probably because he goes totally asleep instantly.  You hear his pulse on the monitor at a normal rate and then at a resting rate in seconds.  I am trying to think, "peaceful" but all I can think is "intoxicated."  Ugh.  Again, I only have time to get a cup of coffee and open my book before I am called back to the recovery area.  There is some chatting with the nurse monitoring Adam, but this is the longest hour of the day - waiting for Adam to wake up.  But then again, you want him to sleep as long as possible because he has to lie there for at least an hour, and it is extremely difficult to entertain a kid who is lying down, basically still for that long.  We always make it though.  Clinic - out.

So other than the nightly pill and the Friday clinics, Adam is acting like his usual self.  He has this monkey thing going on in the morning when he wakes up.  The routine is to come into our bedroom and lay in our bed until 7 when he can ask for milk.  So, he is up at 6:30 (pretty typical) oooohing and jumping like a monkey.  In his high pitched voice, he asks for some milk, and the whole morning is filled with his hilarious, kind of hysteric, antics.  Like covering his face with a blanket and pulling it off to reveal some crazy face he is making.  Or jumping on all fours on the bed and panting like a dog.  He is just super silly, and kind of random, and it sounds really weird now that I am repeating it.  Guess you had to be there?  While his moods are good and energy is non-stop, we are still waiting for his features to go back to normal.  He is still pretty puffy.  It will happen.  I was comparing pics tonight.  Here is a before and after.