clinic update

Yesterday was our wonderful clinic day.  Last week Jake did awesome!  This week he had to go in for another bone marrow biopsy and spinal tap so he couldn't eat.  Well, as it's been well documented here, the 'roids make him VERY hungry.  In fact, Sunday night he woke up at 1, 3 and finally at 6:30a.m. to eat.  Well, he couldn't eat anything and our appointment wasn't until 10.  BRUTAL!  He basically screamed from 6:30-10.  We saw some friends of ours from Sac at the hospital and Jake just kept screaming and screaming.  Good times.  However, once we got some food in him, he has been wonderful.  We will, hopefully, have the results by this Thurs or Fri from the biopsy and that will give us an idea of whether he has any leukemia cells left in his body.  The results will determine whether he goes down the low risk, standard risk or high risk line.  They have a little different set up for all three.  If things have gone well and he is low risk, they will come by Monday to test his blood and if his blood work is good he will have another spinal tap on Tues.  They will do this for the next 3 weeks.  However, HE IS OFF THE STEROID!!!  At least for the next 2 months and then he goes back on it for 2 weeks in month 4.  Hopefully, he will get some energy back and be able to strengthen his legs some.  The steroids make his legs hurt really bad and he can't walk.  We will make him walk sometimes but he will just collapse on the floor.  It's been tough to see how fast he could go from a VERY active 5-year old to just sitting on the couch all day because it hurts to do anything else.  The effects of the roids should wear off in about 4-5 days.  We are very excited.  Yesterday was our one month "anniversary" since Jake was diagnosed.  Luckily, things have been going well and we sure hope his body continues to respond to what they're giving him.  Again, the support has been great.  It's amazing how much a "we're thinking of you" means.