Day 14 (2 weeks!)

Monday, June 18, 2012

Ari has been a chunky monkey since he was 1 week old. The kid takes food very seriously and has never skipped a meal (hmm sounds a bit like me).   As he moved from infant to toddler, his baby fat started to disappear and muscles emerged, but he was still deliciously squishy. He had dimples in his elbows and his tushie (again, sounds a bit like me) and creases separating his hands from his forearms. His eating habits were was he.

During the two weeks prior to his diagnosis, his appetite suddenly curbed, but we were told loss of appetite was a symptom of respiratory distress and another indication of asthma/pneumonia. By the time we got to the hospital, he weighed in at 30 pounds (down 1.5 pounds from his 18 month appointment) and when they weighed him yesterday, he had lost another 2 pounds.  I was surprised because his appetite has been stimulated by the 3x daily steroid, but the doctor explained that the body uses an incredible amount of energy to fight the disease, and therefore, every calorie he consumes is going straight to work and he needs more grub to fight the bad cells and grow the good cells.

So today we started a high fat, high calorie diet. (Sounds like what I've been on for the last 6 months..whoops.) The nutritionist dropped off one hand-out with easy ways to add extra calories to meals (extra butter, cream, nuts, etc) and one of the most salivating things I've ever seen...drum roll please...the Children's Hospital Boston Milkshake list. All I have to do is dial 5-FOOD from our room phone and Ari and his taste-tester Mommy gets hooked up with creamy deliciousness like:

1330 calories in one 12 ounce frozen drink?  Heck yeah!  If they want him to indulge, this is the way to do it.  I can't think of a better way to add some meat to his bones!  There's also the Oreo milkshake, Cappuccino milkshake, Creamsicle shake, and a whole variety of smoothies and freezes.  Let's hope he will drink them and enjoy them.

And then his milkshake will once again bring all the girls to the yard...

Daily update:

While Ari slept the day away, we received a bunch of great news.

First, his morning lumbar puncture came back clean!  These are preliminary results but we are ridiculously optimistic that this means the cancer cells are no longer in his spinal fluid.  Even if the final results show cancer cells, we know the prelim results indicate they are almost all gone.

Second, we viewed a side-by-side comparison of Ari's chest mass from June 4 to today.  On today's image, the mass was barely visible!  Even the doctors said this progress was better and quicker than they expected.  The chemo melted the mass away.

Third, the bacterial infection is officially gone and Ari was able to have a new central IV line placed so there will be no more needles for (hopefully) a long time.

Although Ari does still have a viral infection (meaning he cannot leave the room and visitors are asked to stay outside his room), and though he is feeling all-around pretty lousy (and will for about a week), we know it is just another 7 days or so before his body begins to rebuild good cells and he will start to feel better. 

And since he slept all day, I'm a tad nervous he will be up all night.  So I'm gonna hit the sack. 


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