My daughter, Heather, was born with Down syndrome. This brought us to Primary Children’s Hospital many times. We saw many therapists and she had multiple minor surgeries.
At age 10, she was diagnosed with ALL (Acute Lymphatic Leukemia). At this point our casual relation with the hospital became a constant reality. She had a very difficult strain of ALL and was very slow to respond to the chemotherapy, which required her to receive extra treatments and cranial radiation. Her treatment included 9 months of chemo, with another year and a half of maintenance chemo.
She was cancer free for 15 months, but then relapsed. She had to undergo a bone marrow transplant, which was a very difficult procedure. Amazingly, she had three sibling matches! Her sweet brother was her donor. She spent 108 days in the hospital and had many difficult problems, but she engrafted beautifully and was then event free going into her two-year checkup.
As we met this milestone, we were told we could breathe as there was only a very slight chance her cancer would return. We didn’t get to breathe very long. Within six weeks, her cancer returned. It was so hard to go back to the hospital. In less than two weeks, she had two septic infections (bacterial and yeast) with zero white blood cells to fight it. This was too much for her, and she passed away four days later. We were heartbroken, but also grateful for the six years of great care, concern, and love we received by countless specialists at Primary Children’s.
Primary Children’s Hospital created a caring, safe atmosphere where Heather was comfortable even through very difficult times. After many years of treatment and spending many days in PCH, she was still happy to come back. She would point to the fourth floor and say “I want a room, there.”
We were blessed daily if not hourly by the amazing staff at PCH. Just a few of the things I am grateful for:
Doctors and specialists who took great care in finding the best treatments for Heather’s special needs.
Doctors who took time to kneel at her bedside and talk to Heather face-to-face.
Residents who took time to consult and talk to Heather and me in the middle of bad nights, and invited a princess to visit her.
Nurses who did so many things to let her know she was important to them. (Having her favorite meal in the fridge after a late surgery, being her advocate with the doctors, letting her choose the spot for her insulin shots, showing interest in her life, treating her like a princess, and even dressing up like a princess, just for her.)
Volunteers who went the extra mile to find the right video game, or just be her friend.
Child life specialists helping her think that having a Broviac line is cool.
Music therapists who learned her favorite songs.
Extraordinary care from social workers, respiratory therapists, chaplains, and specialists.
Cute little smiley people on her breakfast tray.
Environmental workers who brightened her days with smiles and kindness.
I could write a book.
I’ve served on the Family Advisory Council for six years because it’s a way to give back for the great treatment and care Heather received here. I am grateful to share many wonderful stories of extraordinary care with medical interns, new nurses and other panels. Hopefully, they will inspire continued great care at PCH. We had many experiences here, over 17 years, we hope our perspective as a patient’s family may be beneficial.
This article was written by Roxanne Probst. Roxanne is a member of the Primary Children’s Hospital Family Advisory Council.