Jillian’s mother describes how the Pediatric Palliative Care Network team gives her family the support they need to travel the sometimes difficult journey presented by her daughter’s complicated medical challenges.
TRANSCRIPT:
The first weeks of Jillian’s life were filled with a kind of bittersweet joy. After having been told that she would not survive her birth because of significant abnormalities that were found during my ultrasounds, how could we not be amazed by the simple fact of her being alive? But when she was 2 months old, we began to discover just how fragile that life was.
Dozens of tests at Baystate told us only what we already suspected. That every single system in her body was affected, many in severe ways. There was no known syndrome, no one diagnosis to explain all her medical needs, so we were sent to Boston Children’s Hospital. More testing, and still no answers. We made the first of many medical road trips, to Johns Hopkins Medical Center in Maryland where, after two days of testing, they told us that they, too, had no answers. She had dozens of specialists treating her for all her various issues, but no diagnosis…and no prognosis.
After spending months in the hospital and nearly half her infant life on dialysis, Jillian got a kidney transplant at the age of 15 months. We assumed the worst of the battles was over, and we began to settle in to a routine. A very medicalized one, for sure, but it was our “new normal”.
The battles, however, had only just begun. Her neck bones didn’t grow, resulting in a spinal cord injury that required extensive surgery. Her immune system didn’t work, so we added weekly IGG treatments. But Jillian kept up the fight. Those weekly treatments? They became her excuse to watch the New England Patriots play, fueling her love of football. A lengthy hospital stay turned into one of her happiest moments when a Patriots player came in to visit. Despite her physical challenges, she insisted on going to the dance studio where her older sister went to classes. She tapped, she twirled, and she smiled ear to ear on stage. She played in the yard with her brother, and she rode roller coasters at Disney World, enjoying every minute of it.
In 2011, though, it all came crashing down. She was hospitalized over and over again with severe liver infections, many times ending up in Intensive Care. She spent an Easter week battling fevers and infection, only able to leave her room for a walk in the hospital garden. Every infection was dangerous, with the potential to spread throughout her body. Her disease is so rare that no treatment protocols exist. Her best chance, we were told, would be a liver transplant. We went to Children’s Hospital Pittsburgh for a second opinion…and listed her for a transplant there, too. Two hospitals, waiting for one organ. And our “new normal” fell apart.
Life-threatening. Life-limiting. No prognosis. I knew those terms, accepted them on some level. But this was too much. This time, I needed – we all needed – more support. Standing outside my son’s orthodontist’s office, I picked up the phone and called a friend who had told me about the Pediatric Palliative Care program, and said, “I think I need to talk to them.”
A nurse came, and told us about the program. About the ways in which they could help relieve Jillian’s pain and anxiety, and help us all find ways to cope with the stress. A volunteer from the program started coming every week, art supplies in tow, and Jillian was able to laugh while she made bead necklaces and glued on puffy stickers. A Reiki massage therapist came, and I watched as Jillian calmed and relaxed for the first time in months. A social worker came and listened to our fears and worries and gave us information to help, even working to connect Jillian to other children going through similar issues.
Palliative Care can’t change Jillian’s disease, or give us answers to what lies ahead. What they can do – what they have done – is give us the tools we need to travel this road with Jillian.
