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.