Midnight Musings from the Cancer Ward

These are the things I think about when I'm trying to fall asleep in Alex's hospital room:

1.  Alex (and our family) has built so much capacity in the past few months.

Alex now knows how to get to the bathroom while hooked up to an IV.  He can eat meals sitting in a hospital bed.  He tolerates being poked and prodded throughout the day (and sometimes the night).  I'm learning to sleep in a room where a stranger is watching over him all night (to make sure he doesn't rip out any lines).

2. It doesn't matter how old your child is; when they cry, you cry (even if it's only on the inside because you can't let them see you cry).

Alex's autism includes a major anxiety disorder.  Panic attacks can manifest themselves in various ways.  For Alex, one type of anxiety attack is a sudden onset of weeping.  It is the saddest thing you ever want to see.  The chin quivers.  The eyes well up.  Big, wet tears slide down his cheeks.  He hates crying, so he wipes and cries even more.  He had two such episodes last night while he was waiting through a delay in his chemo meds.  They gave him some medication to help him through it, and he finally fell asleep.  I just wanted to burst into tears myself, but I had to hold it together.  On the inside, I was a mess.

3.  Hospital time is a dimension all its own.

Day three of this hospital stay, and we're still trying to get his home medication schedule worked out.  His times don't match hospital "default" times, so he has yet to get his normal daily medication on time.  I have all his "home meds" in the room with me, bubble packed and verified by the hospital pharmacist, but I can't give him those.  I have given his medication schedule to the pharmacy tech and every nurse, but it still doesn't match in the system.

Also, every chemo med has been delivered late from the hospital pharmacy.  Consequently, instead of being released Friday afternoon, we won't get out until Saturday morning.  This hospital stay and chemo has been scheduled for three weeks.

4.  Cancer sucks, but cancer treatment is fascinating and filled with amazing people.

My family's medical knowledge coming into this phase of our lives was quite limited.  None of us chose medical fields for very good reason; this is not our area of strength.  That being said, we have learned, and are learning so much.  It is all fascinating.  I feel like an expert at autism, but Alex has always been physically healthy.  Now we have to learn his illness, his treatment, and how to make it work with his autism.  Occasionally we meet a professional who is slow to catch on to what we need, but that has been few and far between.  Our medical care has been fantastic.

5. Can really does affect the whole family.

Forgive us when we say "we" for everything.  Jessica texted me something the other day and it said "in case we aren't released from the hospital yet."  It isn't really conscious.  And I know full well what Alex is enduring if far more difficult than we can imagine.  But it is "we."  Our family has cancer.  Our life revolves around when "we" have treatments.

6.  Every single day I wish I could trade places with him. 

I so wish I could trade places with him.  I'm sitting at his bedside, grateful that he's asleep.  It isn't fair that he has to endure this on top of all the challenges he has already faced in his life.  And yes, I know all too well that life isn't fair.  But this just stinks.  I also know that in order to trade places with Alex, I'd have to get past his father, his sister, and his aunt who all feel the same way.

In the Quiet of the Morning...

I hate waking up, but I love morning.  My husband's eyes pop open at 3:30 am and he's ready for the day.  My alarm goes off at 5 am and I grumble, but once I'm up, I'm ready to go.  On the weekends, I'd like to "sleep in" until 6 am, but John and the dog always have other plans.  I complain loudly, but when we take off for an early Saturday morning flight as the sun rises, I know that he's been right all along.

I arrive at school every day by 6:30 am; 6:15 if I can manage it.  There are a handful of us there early every morning.  It's quiet, there's no line at the copy machine, and I have almost an hour before the halls are really busy.  I can get a lot done.  I love that peaceful time to really get my thoughts into the day ahead.  When those 21 faces greet me at 7:45, I'm ready to go.

Now, it's early morning in the hospital.  I'm learning new early morning routines.  Alex has been awakened several times to have his blood drawn, get weighed, take meds, go to the bathroom.  He fell back asleep surprisingly fast each time.

I quietly washed up and dressed in the dim light while he slept.  I asked the nurses to watch him while I went to the cafeteria for a quick breakfast (15 minutes, including the elevator ride, there and back; I've learned how to inhale food from years of parenting Alex) while he slept, nervous the whole time because these new people don't yet understand what it means to watch someone like Alex.

He lulls you into a false sense of security and when you let your guard down, things happen.  Two weeks ago, after his surgery to remove a cancerous lymph node, he deftly removed the drain from the side of his neck.  Then he immediately had to go to the bathroom.  My husband and I were scrambling for the nurse call button, trying to unplug the IV pump, and get him to the bathroom "in time."  Last night, he removed the needle that was supposed to be left inserted into his brand new chemo port in between treatments.  It was bandaged up, but it still bugged him.  Despite having me at his bedside, and being on video monitoring, he managed to pull the bandage off without removing his shirt.  I pressed the call button, but the deed was way-done by the time she arrived.  This morning, he removed the DermaBond that was over his incision for installing the port.  I thought he was asleep and was sitting right next to him.  He surreptitiously peeled it off, under his shirt, without me even knowing.  *Sigh.*

We've learned a lot in the past nine months, but there's more to learn.  There will be many more quiet mornings in the hospital.  Three rounds of inpatient chemotherapy, followed by a stem cell transplant.  It will be an opportunity for both learning and teaching, I think.  I have more to learn about Alex's illness and treatment.  And I have more to teach to help the nursing staff take care of Alex.  I tell them he needs to be watched closely, and they say they understand, but then they walk away.  When I call them back they say, "Boy, is he fast."

Autism and Cancer make things much more interesting.  Being a nonverbal adult in a hospital setting has challenges as well.  Being a nonverbal adult who is physically independent, and strong, and determined, and who understands what you say to and about him, is something most of the professionals don't seem quite ready for.  If Alex wanted to, he could just get up, get in the elevator, and leave.

Caring for Alex requires "constant vigilance!" as Alastor Moody from Harry Potter would say.  The next few months will be an interesting ride.