Finishing up Chemo Round 2

          On May 8th we'd been home four days when Emmett's fever started.  He scored high again the morning of the 9th so we brought him into the Jimmy Fund Clinic.  And then he showed no fever.  But we got admitted anyway because his ANC was below 500 which is neutropenic (meaning barely any immune system).  His red blood cells were also low enough to require a transfusion in the clinic while we waited for admission to the hospital.  Our normal floor was pretty full, but the clinic sent us over anyway so we spent a few hours in the treatment room before we finally arrived at our home away from home....away from home (NM). 
          The first day or two in the hospital we thought we were better off than last time as far as pain was concerned.  Whenever we said we didn't think his mucositis was as bad this time, Dr. Kieran replied 'yet.'  He was the attending on call over the weekend (which are always pretty quiet), so we had a lot of opportunities to talk to him about AT/RT and his research and side effects and all that stuff. Emmett started to be uncomfortable Saturday and that's the first time we requested a little morphine.  Dr. Kieran's advice was that the pain's going to get a lot worse before it gets any better: "we know what we've done to him with the chemo treatment and we know the side effects that are coming...we should try to be responsible and be humane and help him get through the side effects with as little pain as possible...sure, no one wants to have their baby on a continuous morphine drip, but you just need to decide how uncomfortable you want your child to be"...and then he tried really hard to hide a smile.  This made us laugh -- doctors are usually so serious and it catches you off guard when they make a sarcastic comment and show some personality.  We had to agree with his perspective, and by the end of the evening, we had a PCA on order.
          A continuous morphine pump, called a patient controlled analgesic (PCA) infuses a set amount of morphine each hour as determined by the "pain team".  The PCA also has a button the nurse can press to give Emmett an extra "kick" of morphine as needed (the "kick" button can only be pressed once every 10 minutes).  Supposedly over the course of a day your child actually ends up getting less morphine with a PCA because the pain never gets out of control like it would if he only got it when the parents or the nurse thought he looked miserable.     
          We're glad we ordered the PCA as early as we did because Dr. Kieran was spot on, as usual.  This round ended up being significantly worse than the first.  Last time he didn't get nauseous (but he also didn't eat anything for an entire week), but this 2nd round had a new drug, plus Emmett is now on a feeding tube.  He has been throwing up a bit.  Not constantly, but he's been put on multiple supplements, which seem to upset his stomach pretty quickly.  Even after he's thrown up, he coughs and gags rather violently at times, which seems to be choking or gagging on mucous that's stuck in his throat from the mucositis.  (Luckily one of the nurses' reflexes includes sitting Emmett up and getting lion out of the way all in one motion to keep lion from being a casualty;  even so, lion's been through a lot and has found himself in the washing machine often).
          Despite moments of happiness or a fleeting smile, Emmett is pretty miserable.  It makes us thrilled to see personality come out at all.  Repeating a word, wanting to sit up, asking to go play ball, a single smile, asking for "Pooh" or anything simple has become a treasured moment during these fever weeks.

Pictures from the last 2-3 weeks:

Emmett found a razor in the toiletries bag, then handed Micah the shaving cream!  I don't think he's really seen Micah shave that many times, but somehow he sure knew what to do with it! 

There's hardly enough room on this guy's chest for all the EKG leads

You can't really tell from this picture, but mops & brooms are one of Emmett's favorite things, so you can imagine how he feels about a motorized mop! Once in a while, it gets left in the hall unmanned and that makes Emmett VERY excited

He woke up with a black eye one morning :(  The vomiting gets pretty violent at times.

No surprise that his platelets were low and he needed a transfusion that day.

For Round 2, he ended up with 4 transfusions: 2 RBCs & 2 Platelets

There are musical stairs near the lobby.  Emmett was tethered to his IV pole, but was happy to sit on the top step and kick his legs to trigger the sensor

It's been a rough few weeks, but this weekend was much better. 

We were glad to have a few good days before starting radiation. (Post with info on that coming soon.)