Saturday, April 5, 2014

Orange U Glad 2 C Me?

Or, Yes, I Am the Orange Powerpuff Girl

The Goodwill Fangirl almost never came back after The Teen's bone marrow transplant. (We're doing third person today. It's just easier to keep a little distance right now.). The other side of transplant wasn't what anyone expected. No amount of pre-admission education could prepare her for the hurricane emotions of fear and joy, rage and sorrow, grief and awe that flew her high and flung her low since last August, when two units of cord blood from the generous mothers of two children she'll likely never meet were given to her youngest daughter, to replace the bone marrow that was doing its best to kill her.

Photo Credit: Dear Hubby
Toe-Curling: Stop that, honey, it makes you look nervous.
Clothes and Accessories: Vintage 60s floral pants turned into skinny jeans (thrifted a coupla years ago); Lace cami (@$2.99 at The Rugged Wearhouse many years ago); Talbot's cardi (gleefully removed from a clearance rack during one of the last trips she bought anything actually new); Loft flats ($11 final clearance a couple of years ago; maybe not everyone likes sequins on their feet?); Purell hanging from bag (every bone marrow transplant mommy has one of these)

She sure didn't care what she was wearing, but she knew whose child was so close to death that the parent could not change clothes for a week. She didn't want her own picture taken, and The Teen did not want any photographic evidence at all. The Teen knew she was a phoenix rising from the ashes, but she did not want to see the fire ever again.

Friday, January 17, 2014


The last two weeks have been full of surprising but welcome changes. At our first outpatient clinic visit following our daughter's discharge from her third admission to the pediatric bone marrow transplant unit (PBMT), our treating physician shocked us by saying we could start the transition of some of the post-transplant care from Duke Medical Center to our home hospital, Brenners Children's Hospital. We had estimated it might be at least mid-February before we could move back home, due to all the complications. While that was definitely welcome news, we were caught a bit off guard as we had quite a bit of work to do to move out of our home away from home, The Ronald McDonald House.

But as is the case with bone marrow transplant recoveries, plans are usually subject to change, and later that afternoon a blood level for the key medication to treat Graft vs. Host Disease came back alarmingly low, and our plans were adjusted to include a Sunday clinic visit and then our usual weekly visit to the Duke outpatient clinic yesterday.

Yesterday's visit went well, and included the surprise removal of the peripherally inserted catheter in the kiddo's arm. The nurses were unable to draw any blood from it, after quite a bit of effort, and the doc said go ahead and remove it since she is not getting many IV medications at this time. The in-office removal was painless and much less of a invasive procedure than the outpatient surgical placement on New Year's Eve. This means no more daily flushing of lines, cap changes, or dressing changes, and is one more sign that she's moving toward full recovery.

Everyone is excited that the bone marrow transplant numbers are looking terrific, and that our daughter no longer has Sickle Cell Disease. She is still dealing with complications of transplant, including Graft vs. Host Disease, blood clots, temporary diabetes from the steroids, and weight loss that is concerning. Our transplant doc calls this the "honeymoon period" post transplant, i.e. looking good but there is still a possibility that GvHD could flare and cause issues in the new few months. We will continue to follow-up at Duke regularly and for emergencies, and her six-month post transplant studies, as well as follow-up ultrasound of the blood clots, are scheduled for mid-February.

We turned in our keys to the Ronald McDonald House yesterday, and brought the patient and the last carload of belongings home. There are still lots of medical appointments and follow-up treatment in our future, but everyone is happy to be at "home-home" again, and most important, all together under one roof for the first time in many months. Our big challenge now is fattening up the kiddo, but hopefully a new medication to stimulate her appetite will help with that.

We cannot thank all of you enough for the many ways you've helped support us through the hardest medical miracle we've ever experienced - the donations, the food, the cards, the gifts, the visits, the emotional support, and all the well-wishes. Sometimes it just helps to talk, and you guys have been awesome.

Love, peace, grace & Godspeed on your own life's journeys,

Friday, January 10, 2014

Status Post Third Admission

That's medical speak for our daughter's Christmas Day readmission to the Pediatric Bone Marrow Transplant Unit, due to new occluded blood clots formed from the use of her central line. We felt very fortunate that we got to go "home-home" for two days before Christmas, and had our big day and prezzie-opening on Christmas Eve, because our oldest daughter, The Costume Technician, had to fly back to NYC on Christmas Day. Mom was scheduled to go with her for a few days, as a lovely gift from awesome Dad and Dear Hubby.

Instead, the kiddo came downstairs on Christmas morning with her left arm swollen and painful. A quick call to Duke determined that the docs wanted us to make the hour drive back to the PBMT ASAP, so Dad took the patient to the hospital, and Mom took the oldest to the Raleigh airport. An ultrasound done Christmas night revealed new blood clots. Mom freaked out a bit, not only over the blood clots created by what she had labeled the "ticking time bomb" central line, but also because there was no dinner to be found on this biggest of U.S. holidays for Dad and patient, who was lucky she got a remarkably bland meal tray. Thankfully, the wonderful folks at the Ronald McDonald House of Durham saved the day, making us to-go boxes from an awesome seven-course Christmas dinner being served by a local singles group.

Our daughter had outpatient surgery on New Year's Eve to remove the central line from her chest, and to place a less invasive peripheral line in her right arm. Although she was in good spirits, with a load off her chest both figuratively and literally removed, the post-anesthesia puking hit right before midnight, so she and Mom watched the ball drop on TV while switching out plastic bins. While her body's own anti-clotting mechanisms will work on the existing clots, the removal of the central line and administration of anti-coagulant therapy during the coming months will hopefully prevent any new clots from forming.

Monday, December 16, 2013

My Hair, Revisited

Sasha Jane, ticked off velvet accessory stand for my honking rhinestone ring and vintage silver bangles

Until the end of the year, be prepared to be to see some schizo hair lengths; I'll be sharing a few outfit pics that didn't get posted when they were actually worn. As I approach my 2014 shopping sabbatical (witty awesome title still not determined, suggestions welcome), it's a relief to find forgotten photos from before the bone marrow transplant, and be reminded that I do have way too many for one woman to ever wear lots of clothes I love, even though they've been worn only once or less this year. One goal of not adding new clothes to my closet is to thoroughly enjoy the ones I do have and to make the most out of re-mixing them.

The Deets: Bow-tie blouse from Indian tailor (Indian flea market stall); 
Maxi skirt (Ross clearance, $7); Impo booties (old)

Another goal for next year is to thoroughly enjoy my hair - once it grows back into a bob. Super short hair is not for me. In the early months of living on a bone marrow transplant unit, it was a great no-maintenance do, but it became surprisingly expensive, because it needed to be cut so frequently. Even though The Teen wouldn't let me shave my head when she shaved hers, the last time I had it cut in September, I practically scalped myself, hoping I could do an effortless Jamie Lee Curtis style, and be done with hair maintenance forever. Um, no. Instead my thick straw-like locks shot out like an angry hedgehog's quills, and nothing would do but to start growing it again, so the longer weight will pull my hair down and give it the illusion of softness.

One style lesson I learned this year? Short peeps can look long and lean in maxis.

Of course I know it's just hair, and with The Teen only beginning to show the barest signs of hair growth post chemotherapy, I'm not obsessed with it. But man, I miss it.

Have you ever regretted a drastic hairstyle change?

Sunday, December 15, 2013

Two Steps Forward, One Step Back

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.