That’s how the recovery seems to go for many pediatric bone 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.
And then, as happened with our daughter this week, little 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 Suddenly, the second much-needed weekend pass was revoked (she got to come home for the first time since July 29 last weekend), and a new home syringe pump was delivered to administer that medication in IV form.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.
And then the pity parties start. Again. Our teen patient, 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 to you.
I haven’t talked much about being the parent of a bone 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 roof.
I wrote in a Facebook status earlier this week that I know 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.