Chemotherapy

Emmett got his first chemo Monday night.  We were surprised at how late he received it - we expected it in the afternoon, but he didn't end up getting it until just before 10 pm.  It was really scary most of the day, waiting for them to walk in with it and apply poison to his bloodstream.  My heart would pound anytime anyone came near the door.  By the time it finally got rolling I think I was so mentally exhausted from expecting it all day that it was much less traumatic than I expected.  At least for me, Sunday was probably a more emotional day than Monday.  I guess I did have my fair share of emotion Monday, so I take that back.  But by the time they finally brought in the toxins I was so spent that it wasn't nearly as emotional as I anticipated.

I guess you just accept that fact that even though they're putting poison in his body, it's less toxic than the cancer that has twice tried to paralyze him in the last month.  I'm sure it wouldn't take much longer for the cancer to totally overcome him if left unrestrained.  So sucker punch it now while we have a chance, and before it has debilitated his body any more (the nurses say cancer patients we see that are physically debilitated are that way due to damage from the cancer, not the chemo).

Chemo is less destructive than the cancer -- hold on to that thought.

We did have a good day Monday.  We went around the hospital a few times throughout the day.  A music therapist stopped by and really perked him up.  He had been lying in bed pretty immobile, much like he had been since the surgery.  For some reason I decided to start doing everything I could to make him laugh, which usually isn't in my personality (that's more of Betsy and Cris's specialty).  But it was amazing what happened.  He started smirking just a little, then eventually he smiled!  Then he wanted to sit up, then I got him excited to come down and play with some toys we had brought from Child Life including a tool box with tools and a sketching pad (his favorite part is erasing).  I was playing peak-a-boo from behind the bathroom door and pretending to eat the tape measure, and he was responding and smiling, even if the left side of his body was still immobile.  It was about that time that the music therapist stopped by and played some songs for him.  That about brought tears to my eyes as my debilitated son tried to engage in her songs in whatever way he could.  She brought a guitar, and he remembered where you strum it a even before she played it (thank you Malcolm and Aaron!).  He could only use one hand, and was rather clumsy, but he made some sounds.  The sounds he made reminded me of a movie August Rush and the music that the boy made, and it made me think about boys in sad situations...and it made me sad.  The therapist played a few more songs including Old McDonald and the intsy-wintsy spider, and some others.  She had a recording device so that Emmett could push a button and make dog, cat and other animal sounds as she sang Old McDonald.  He made a horse noise for the first time (neigh)!

I'm trying to remember specifically what else we did Monday.  Late in the day we had a small miracle.  The nurse had brought blocks in for Emmett to play with, and he started reaching for block towers with both hands - it was the first time we'd seen him use his left hand since before his last surgery.  We were so excited!  Excited to see him make some progress, and a little sad that it was right before the administration of poison.

Starting the chemo infusion is a huge deal - with all the checks and double checks it literally took all day (until 9 pm) before they were ready to start, and then it still took another hour to get it started.  There are sooooo many meds they give him before, during and after chemotherapy.  I can't believe it.

They bring the chemo is these special syringes and bags, all labeled and marked toxic biohazard.  Vincristine came in a syringe (with special attachments), while Cisplatin came in a black bag (that always looks comforting on your IV tower).  Katy was holding Emmett and he fell asleep before they started the pumps.  Vincristine was first.  It went in over the course of a minute.  The Cisplatin was then started and that was a continuous infusion over 8 hours.  We put him in bed, and he slept through the whole thing, including diaper changes (you have to change his diapers every 2 hours wearing special gloves so you don't contaminate yourself).  We expected him to wake up with side effects (vomiting, headaches, mouth sores, etc).  The nurses say some kids deal with it better than others - some kids are in pain and misery the whole time, while others are still playing and you'd never know what's going on.  So far, at least for the first night, he dealt with it well.  We feel that was an answer to prayers as we've wanted him to have a few good days to continue recovering from the surgery before the chemo knocks him down (if he never started using his left arm and leg before chemo started, and then chemo made him feel so awful that he wouldn't do anything for a week, how much would Emmett digress?  How long would it be before we would know how much function would return after his surgery?  That's one reason we were so happy to see him start using his arm before the chemo started).

Tuesday morning came and you wouldn't know it was any different than any other day since his last surgery.  There was really nothing to indicate what he had received overnight.  He was a little more active.  He wanted to be out of the room more exploring the hospital.  He stood on his own much more - and he took a fair number of steps, especially when we were down in the entertainment area with Cris eating pizza by the ball machine (probably 10-20 steps total).  He's still really hesitant/weak on his left leg, but he uses it.  He was using his left hand more.  We noticed him using it to rub his left eye.  He was holding the rain stick (a tube with lots of beads in it) with two hands, along with a few other toys.  Maybe the swelling from the surgery is going down.  Maybe the chemo landed an uppercut and knocked the wind out of the cancer.  Who knows.  All we know is that Emmett progressed on Tuesday, and that makes us happy.

More chemo will be delivered any minute and they'll start an infusion that will last 72 hours.  Hopefully Emmett does as well again!

-Micah