pint-sized prisoner

Caemon and I had our first day alone together in quite some time. Typically when Jodi has to teach for a couple of days at a time, my sister or our friend Carol will come visit with us so that the days are not so challenging. Caemon and I needed today, though, and at the end of it all, it’s a good thing we were here by ourselves.

The day started off fine. We read a little, played a little with his medical supplies, ate some breakfast (He had super oatmeal with butter, brown sugar, white sugar, and whole milk. My former self is cringing at all this sugar, but he needs the quick calories desperately), and had a good time chatting with our day nurse about what was on the day’s agenda, which really meant chatting about when we would go to the playroom because we had a day when nothing had to happen. This is a bit of a record. Caemon has needed blood products of some sort nearly every day for quite some time. He has needed platelets every other day for nearly a month, and while I imagine he will need them tomorrow, it was a nice change of pace to see his body producing a little more and using up a little less. We learned that his neutrophil count, while still minuscule,  is slowly climbing as well. These are good things to see because this is the first sign his body is recovering from chemo and ready to make new cells.

Unfortunately, this good news did little for Caemon’s spirits. We are learning quickly that the better Caemon feels physically, the worse it feels to be in the hospital. He had multiple outbursts today, each triggered by something seemingly small and ending up in writhing, screaming, pulling-on-his-IV-tube sorts of episodes. We got to the bottom of each of these and moved on, but it was clear as Caemon was yelling that he didn’t want to be here, that he didn’t want to be in his bed anymore, what the source of his anger and frustration was.

The worst, however, was yet to come when we took a trip to the playroom. His nurses typically try to disconnect him from his IV pole for these visits so that he can be free to run around and play and feel a little more normal. Caemon so looks forward to this hour or so of freedom every day. When it came today, even though his little car had been moved, he was still thrilled to walk down the hall of the hospital, to wave his hellos to the nurses and make his way to the elevator.

The playroom time was great, and he made the most of it as usual, even taking his turn riding a car he found down a small ramp near the playroom (a new favorite activity). Soon, though, the trip back up to our floor turned south. Once we got off of the elevator, Caemon started stalling. He stopped his car and began taking off his mask (he is required to wear a mask any time he leaves his room to protect him from any airborne bacteria/fungus/viruses that could infect him). I insisted he put it back on, but he refused, and he wouldn’t budge. He quickly became frantic. He didn’t want to go back to his room. He didn’t want to go back to his bed. He didn’t want to wear his mask. He just wanted to get back on the elevator. It was heartbreaking. I had to quickly push his little car back through the doors of our ward where, thanks to hepa filtering, we are at least a little more protected from the rest of the hospital, but again he stopped, and he was wailing. I saw his nurse and soon had to pick him up out of the car and carry him back to his room. He was screaming, and once we were there, he cried and yelled that he didn’t want to be here. Our favorite research doctor came down the hall, as he was coming to pay us a visit, and he tried to get Caemon to tell him what was wrong. I held him and tried to comfort him. Finally he screamed that he just wanted to run down the hall by himself. The three of us adults–me, his nurse, the doctor–stood there heartbroken for him. This poor boy wants nothing more than some normal, some freedom, the ability to just be a little boy without all these awful rules and restrictions and attachments. I can’t lie: All I wanted to do was run down that hallway with him, get on the elevator, and take him outside. But I couldn’t.

Our lovely nurse did what she could to give him a tiny bit of freedom. She told him she would wait twenty more minutes to hook him back up to his IV, that he could take that time to walk around and that she would hide some surprises in his room while he was gone. Meanwhile, the doctor took us for a walk, and we worked on calming the boy down. Ironically, despite his previous desire to run down the hallway, he wanted nothing more than for me to carry him, so I did. I talked with the doctor about the reality that we may be here for several  more months, that we’ve got to find some strategies to make this tolerable. As we chatted, another parent walked by and gave Caemon a bit of a teaser, letting him know there were six surprises hidden in his room.

We did return about twenty minutes later. Caemon willingly came back, and we found a note on the door reading, “Hi Caemon! Welcome back to your room! There are SIX surprises hidden here. I hope you can find them! See you soon.” He was thrilled and so excited to look around. The doctor stayed to help him look, as did a patient care assistant. He adored finding every last item, and his spirits were so lifted.

I honestly don’t know how we would make it through some days here without the fabulous staff, and particularly our RNs. This is a really tiny world with a lot of rules and a lot that is scary and unfamiliar, but they make our lives so much better. They treat the whole patient, the patient’s family, and we’re so very fortunate for that. I don’t know how we would survive days like today without them and the strength they offer us.

We ended the day on an up note. Caemon wanted pasta for dinner, so we ordered it from room service, and he helped me add a healthy drizzle of olive oil to boost his calories. He also requested banana pie, which I managed to piece together from items I ordered from the kitchen: graham crackers, butter, vanilla pudding, and bananas. We got to “cook” together again, and he had some fun eating. It was pretty lovely–perhaps not worthy of a Michelin star rating–but pretty good in a pinch, and worth quite a  few toothy smiles from our sweet boy.

 

We are faced with a whole host of challenges these days, but our new priority right now is to help Caemon enjoy the life he has here as much as he can, to bring in fresh experiences, to help him manage his frustrations, and to give him tastes of freedom wherever we can. This won’t be as easy once he is admitted to the bone marrow transplant wing, as he will be in isolation for a much longer time without access to luxuries like the playroom, so we take what we have now, help him express these complex feelings, and try to find something that he can look forward to each day.

And secretly, we hope like crazy that we will get to go home for a few days’ respite sometime soon. There’s no harm in hoping right along with us.