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.
On Tuesday, January 7, we were discharged back to the Ronald McDonald House of Durham, which as lovely as it is, has been likened to exchanging one “cellblock” (what they actually call the PBMT unit) for another. With her autoimmune system still extremely fragile, there aren’t many opportunities for outings for a bored teen, other than hated early morning visits to the outpatient clinic. On the bone marrow front, she is actually doing beautifully, with amazing lab numbers, and to use the analogy of a complex computer system gradually coming online, many systems already up and running, and more coming on board every day. Right now, she does not need IV fluids or tacrolimus administered at home, but she still has multiple insulin injections every day and a daily Lovenox (anti-coagulant) injection. Her spirits are improving, but she is still easily fatigued and sleeps a lot, while this miraculous new bone marrow, free of Sickle Cell Disease, continues to make itself at home in her body.
I apologize for the long lapse in posting. Dad has been a rock throughout all of this, his patient and laid-back personality a real plus for long term care-taking. Mom, the OCD worrier type, has been a little more emotional, especially over the holidays. Not only am I a multi-tasker and long-range planner, a real plus as a paralegal, but I am also a multi-worrier and long-range angster, not so great when so many aspects of my life are out of my control right now. I’ve had a hard time embracing “the new normal” when it keeps changing all the time, which anyone who has cared for a loved one going through the ups and downs of a life-threatening illness can relate to. Every day, I can look at my strong, patient youngest daughter and know she is a walking, breathing miracle, and that she has a much brighter future than she did had she not undergone the transplant – while still worrying about the multiple other areas that are still uncertain in our lives. But I’m learning to do something that has always been hard for me, especially since I’m so used to helping others, and that’s to accept some help myself.
There’s an incredible amount of grace and humility involved in an experience like this, and I do feel so fortunate for all of the many different kinds of love and support we’ve received from all of you. We could not have done this without you.
We are so grateful that you are with us on this journey, and wish you Godspeed on your own life journeys,