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Patients & Caregivers


Robin was strong and from day one we knew she was a fighter. She was born without the right ridge on her hip which they thought was a birth defect. When she was a little over a year they broke her pelvis and moved it over to form a natural ridge. She was in a body cast for 6 weeks all the while learning how to roll over and pull herself to standing position. Even at such a young age, she didn’t let things get in her way.

She was in 3rd grade when she started having difficulty breathing. The doctor’s said it was asthma and it was seemingly controlled with medication. She started sports – took gymnastics, was on the American Heart Association Jump Rope Team, rollerbladed, and played basketball.

In 9th grade she went to her orthopedic doctor as she was having hip pain. He told her it was the beginning of arthritis and she’d need surgery to correct it or would end up in a wheel chair. She chose to have the surgery, but insisted upon waiting until basketball season ended – Robin was a star player. At the end of the season, she had hip surgery for a second time. This time they put in a plate and screws to reinforce the area – she was so active, they wanted it to hold. After she healed she made the season’s end of the Jump Rope Team, doing a back handspring into the jump ropes. It wasn’t long after that she was playing basketball and had what we thought was a severe asthma attack. I took her to the hospital where they did chest x-rays, diagnosed her with pneumonia, and put her on antibiotics.

When we went for a follow up the x-rays showed no signs of improvement. It was then that we were sent to Children’s Hospital in Pittsburgh. Robin had one test after another which all came back negative so a biopsy was suggested. They took a sliver of a tumor in her mediatstinum to biopsy. Doing this created a big problem as lymph fluid began to fill her chest and wouldn’t stop. They inserted a chest tube to drain the fluid and attached it to a pleuravac. The biopsy came back that Robin had lymphangiomatosis. We were not prepared for what we were told next. They said “it’s very rare, there’s little known about it, and Robin has 6 months to live”. SHE WAS 15!!!!

She continued to drain for a week while in the hospital but then the insurance company said she needed to be discharged. The fluid hadn’t stopped though so they left the chest tube in and ran it down her leg into a bag. This is how she was sent home. Less than a week later she ran a high fever so we went back to the hospital and she was given a triple course of antibiotics. This time, when it came time for her to be discharged they left her connected to the pleuravac. On the way home Robin had me stop at the store. She said the pleuravac was ugly and she wanted to decorate it. She even named it HERMAN. The day before school started she went to the doctors and they pulled the tube. They thought that since the drainage had slowed down so much her body would reabsorb the remaining fluid as it accumulated – they were wrong.

A pulmonary function test came back showing her total lung capacity had dropped to 67%. They decided to put her on Interferon Alpha 2. The side effects were horrible. She felt like she had the flu all the time. Robin took herself off of the Interferon because she was tired of feeling sick, but her PFT’s continued to get worse and on 2 separate occasions they had to drain more fluid from her chest. We learned the fluid wasn’t being absorbed but had hardened like mortar between bricks. To get it out, they would basically have to open her chest and take a chisel and chip away at it but the risk for infection was too great. Instead we tried radiation therapy, which seemed to temporarily help a little up until high school, her doctor was a pediatric pulmonologist – Dr. Kurland. He was awesome with her. He was honest, he did research, and he even cried with her. He told her “she was one in a billion”. When the day came where she had to be transferred to an adult doctor it was rough sailing at first, but her new doctor – Dr. Pilewski won her over. When we went to see him we always took something we found on the internet about her disease. He was always willing to listen and check out experimental treatments.

In 2006 she started having the fluid build in her chest again so she was admitted to the hospital for the insertion of another chest tube – we learned then that her lung capacity had dropped considerably to 27%. After a few days they pulled it and she went home. Within a week the fluid was back, so they put in a semi-permanent tube that was capped and would allow her to drain herself whenever she felt she needed.

No matter what was going on with Robin’s illness, she always continued to work because she loved her job. She became heartsick when the doctor finally told her she wouldn’t ever be able to return to work. She was employed by the Eat n’ Park Hospitality Group and in addition was manager on the field for the Steelers Experience at Steelers Training Camp. Her passion was the Free Care Fund at Children’s Hospital – so much that she dressed up as the Eat N’ Park Cookie to raise money for the Children’s Hospital. She was always upbeat and wanted to help others. Very few people ever knew she was ill. She didn’t want people to pity her.

It was Super Bowl Sunday and she was at her sister April’s house. Robin was sleeping on the couch and April went to check on her and noticed she was having trouble breathing. She immediately called me and when I got there the paramedics were there. Robin’s heart rate was very slow. The last words Robin spoke were “call 911”. She was life-flighted to UPMC. She never regained consciousness.

Robin was surrounded by people that loved and cared for her. She always found a way to brighten up a room and make us laugh. She and I had a very unique relationship. I never let her feel sorry for herself for very long. A swift kick in the butt put a stop to that (it was an ongoing joke with us) and I never let her see me cry. April, Robin’s sister, was like a 2nd mom to her from day one. She has also met and was engaged to a wonderful young man, Brian, who loves her dearly and took very good care of her. It is so sad their time together was so short.

She had many tattoos. Her first one on her belly said MISTAKEN DREAMS. That was for all the dreams she had that she knew she wouldn’t be able to make come true. Another one was on her arm and it was the Japanese symbol for BLESSED. When she showed it to me, I said “we certainly are”.

We know she’s in a much better place doing all the things she so loved and couldn’t do any longer. She is our angel. God blessed us the day he brought Robin into our lives and he blessed her the day he took her home to be with Him. It’s so sad that this disease is so rare and so little research has been done on it. The Lymphatic Research Foundation and the LGD Alliance are a very good start. Robin donated her organs to help others and what couldn’t be used was given for research. That was her wish.

Robin fought to the very end. My advice for anyone is to live life to the fullest for you never know when the day may be your last. Take nothing for granted and have no regrets. April and I had a great teacher in Robin, she taught us these things and about being strong. We try to live up to what she would have wanted us to do everyday, but being strong was a lot easier when she was here with us to show us how it was done. We are forever blessed for having Robin in our lives.

Robin’s sister April gave birth to a son (Ryan James) nine months and one day after Robin’s death. In 2009 Ryan was joined by a sister, Jocelyn Robin, who was born on her mother’s birthday–a gift from Robin, we are sure! Both of the kids know their Aunt Robin is up in heaven and we tell them they have their own angel looking over them.