The Blog Formerly Known As Practical Paralegalism
marrow transplant patients, especially adolescents, infants, and toddlers.
During the long monotonous days and months of heavy medication, frequent medical
visits, and crushing isolation, suddenly recovery will seem a little more
tangible and closer, a medication discontinued, lab results more normal, or a
pass home granted. An actual date signaling the end of the strange, abnormal
existence completely focused on the round-the-clock maintenance and vigilance of
that fragile new bone marrow system seems calculable. Normalcy seems
tantalizingly within grasp.
|10 years ago, when a cure for
Sickle Cell Disease was unimaginable.
We do know this is a miracle.
signs indicate that recovery might not be continuing quite so steadily, albeit
at a plodding pace. An alarming weight loss, increased vomiting, and a call out
of the blue because a lab result showed the critical oral medication to treat
her Graft vs. Host Disease was strangely no longer being absorbed by her body.
Suddenly, the second much-needed weekend pass was revoked (she got to come home
for the first time since July 29 last weekend), and a new home syringe pump was
delivered to administer that medication in IV form. In the world of bone marrow
transplant recovery, decreased IV medication is one of the signs that home and normalcy
are one step closer. Adding IV medications, scheduling increased clinic visits
to monitor the levels of that medication, and losing the chance to go home so
you can be close to the bone marrow unit in case of emergency, push the longed
for discharge date to the care of your home hospital back to an unknown. Again.
already sick, bored, frustrated, and lonely, retreats further into sleep.
Eating is a depressing effort, with no appetite, but the knowledge that if any
more weight loss occurs, an IV for liquid nutrition and more time at the bone
marrow clinic will be the next steps backwards.
The difficulty adjusting to the strange bubble world of bone marrow
transplant recovery becomes more pronounced, and the frustration of dealing
with constant inquiries about symptoms, eating, and just barely minimal activities
of daily living much more evident. Being a teenager with a normal high school
experience is hard enough; being a teenager left out of your senior year and
living in a small space with your mother is the worst thing that ever happened
marrow patient, but the loss of control of our own lives is one of the hardest
experiences we have, along with watching our children suffer terribly and not
being able to do much to relieve that misery. We parents cling together, and
when we get a minute to chat, endlessly discuss bodily functions, medication
administration, catheter maintenance, and yes, that helpless feeling that everything in
our lives right now is absolutely beyond our control. It helps. For me, missing
my husband and best friend desperately as we change caregiver shifts like ships
in the nights, lacking a job and health insurance for the first time in my life,
watching my small retirement savings vanish to keep a roof over our heads,
endlessly cleaning our temporary home at the Ronald McDonald House and our “home-home”
(bone marrow transplant speak) for an auto-immune suppressed patient, and yes,
living with a sick and frustrated teenage daughter, with whom I’d always gotten
along beautifully before, have worn me down to the core. There are too many
days when I feel like the worst parent in the world, too tired to do more than make
sure the central line is maintained, hook up the IV meds timely, and beg my
child to eat something, anything, even if it shoots her sugars through the
we will get through this, stronger and ever grateful, and we will. But right
now, in this very moment, while we are taking that dreaded step backwards –
again – that longed-for date when normalcy might start again seems like never.