part 1: damn tumors

while at work on thursday evening, i agreed to change my patient assignment for friday. typically we take care of the same two to three people on our consecutive days of work for continuity of care. but on thursday, another nurse asked me if i would take care of her patient the following day, because she wouldn't be there and because she thought i would do a good job working with him and his mother. i agreed, flattered by her compliment. but when she told me "the story," i realized i had signed up for a challenging day. and sure enough, friday was hard...

my patient on friday was C, a 20 year old boy. i say "boy" because he has been sick for a long time and has hardly had the opportunity to grow up. C's mother attends to his every need and serves as his voice, making most of the hard decisions for him - i think in an attempt to fight his battle. anyway, C is at a critical time in his short life. he is 50 days post transplant and unfortunately, the transplanted cells are attacking his skin, gut, and liver. his small body is frail; his organs are failing. as if graft versus host disease wasn't life threatening enough, C has already relapsed too - he has tumors in his entire abdominal cavity and they are causing significant pain. sadly, we have run out of tools, treatments, and tricks to save him. C is dying.

i had the opportunity to facilitate a transition for C. he and his family had decided that it would be good to go home, at least for 24 hours. C has been in the hospital for over 2 months; he has been unable to leave our unit, unable to breathe fresh air for 65 days. and although C felt more comfortable and safer in the hospital, with doctors, nurses, pain management, and emergency treatment available, he did want to go home, one last time. so, with the work of many people (social work, transition nurses, pharmacists, palliative care attendings, pain management specialists, hospice nurses, home infusion companies, etc.), we made the plan for his 24 hour release to be executed on saturday.

THE PLAN: C was supposed to get his blood work drawn early in the morning. should he need blood products or electrolyte replacements, they would be infused early. his other IV meds would be given, back to back before his discharge. his mom would pick up his oral medications in the discharge pharmacy. a hospital bed, commode, wheelchair, and walker were being delivered to his home. the infusion nurse was coming to hook C up to a new pump to make the delivery of IV narcotics available with a simple button push. an ambulance was coming to take C home over an hour car ride away. if everything went smoothly, C would be home by 1:00 PM.

so today, at 1:30, while eating my lunch of PB and homemade jelly on a hiking trail, i thought of C. i hoped he had made it home and was sitting in his favorite recliner. i hoped their were balloons and friends at his side. i imagined a celebration of sorts, albeit a relatively sad and unfair homecoming.

but much to my dismay, when i returned from my hike and checked my email this afternoon, i got news from a nurse friend of mine (the one i had handpicked to care for C today since i would not be there) that the plan had failed. it's not that we hadn't thought of everything. it's that C started to have unmanageable pain. they couldn't control it in the hospital and therefore, it would likely be worse and scarier at home. all of our hard work and preparation, all of our hope - dashed by tumors pressing on his intestines. damn them!

i can't help but feel that life is unfair. this boy is 20 years old. he's confronting death and he's angry. he's scared. and he has very little time left. i wonder if C has been in love. if he's seen a shooting star or watched the sunrise. i wonder if he has unfinished business with any of his friends, if he's been brave enough and strong enough to tell the people in his life that he loves them.

oh my heart aches for this young boy. i so wish there was something i could say or do to make him better. last night, when saying goodbye to C, i apologized for not having been able to fix him, for his transplant failing. he hadn't spoken to me all day really... and when i said this, he looked up at me, rolled his eyes, and said, "yeah, thanks!" there's nothing i could say or do to make him better. and that is just about one of the worst feelings.