This was written by a friend and a member of Saint Jude Parish, Karen Livernois. Karen has and still is always about the special child in our community. This is about her daughter and her doctor. Yvie became daily inspiration and an important part of the St. Jude community. It shows the affect that one single person can have on the world as a whole.
Recently I have been asked if it would be ok for one of Yvie’s favorite doctors, Avi Traum, to run the Boston Marathon in her memory. The result of this would be raising funds for the Pediatric Palliative Care Program at Mass General Hospital for Children.
Many of you know that we hold this department in such high regard, that we opted for donations to them in lieu of flowers when Yvie passed in 2010. What many of you may not know, is why we chose this, and why they, and Dr. Traum (Dr, Avi) are so special to us.
We were blessed to meet Dr. Traum when he was a Nephrology Fellow at Children’s Hospital. We got to know Dr. Traum after he had the dubious distinction of diagnosing Yvie’s PTLD (Post Transplant Lymphoproliferative Disorder). As horrible as it sounds, it was. It was also the umpteenth complication Yvie suffered in her 4 short years. Poor Dr. Traum had to deal with us angry and oppositional parents while trying to provide the most appropriate care for a child with yet another potentially fatal complication.
Dr. Traum not only provided excellent care to our daughter, he did so with such compassion and empathy that he became Yvie’s favorite doctor. You must understand, this was no easy feat. She had seen dozens upon dozens of practitioners in her short life, and most provided nothing but angst, and pain (in her eyes), yet she was so infatuated with Dr. Traum, when we drove toward the hospital, she would start swinging her arms and legs, and sing “Dr Avi. Dr, Avi, going to see Dr. Avi”. Even the dialysis nurses picked up on Yvie’s admiration for Dr. Traum and referred to her as his “girlfriend”. (Mind you, we know there were countless other girls that considered themselves Dr. Traum’s girlfriend, but we didn’t let Yvie know that).
When Dr. Traum finished his clinical portion of his fellowship, we were very sad. We had to deal with yet a 4th set of fellows, and we knew that no one could compare to Yvie’s “Dr, Avi”.
Fast forward a few years. Yvie’s medical condition had become far more complex, and much more tenuous. We, as parents, knew that taking care of Yvie meant taking care of what she needed, not necessarily taking care of her systems and body parts. We tried to come to a Quality of life agreement with her, then current, practitioners, but to no avail. We had heard of a wonderful Nephrologist at Mass General that might be able to help us with the prevailing medication issue. We searched the internet for information on meeting with that practitioner, and what we found was our beloved Dr. Avi was an attending physician at MGH for Children.
After a consultation with Dr. Traum, we knew he needed to take control of Yvie’s medical care. After many complications, and one near fatal case of influenza, we knew we had made the right decision. Dr. Avi then introduced us to the Palliative Care team at MGH for Children. We finally found the team that could help us help Yvie.
We met with Dr. Pat O’Malley (at our house) in January of 2010. We agreed that Yvie wasn’t actively dying, but that she also needed some significant help to be actively living. With the assistance of Dr. Pat, Sandra Clancy and Kaitlyn Merrill with the Pediatric Palliative Care team, we were able to look at what was important to Yvie. What were the things that made her happy, and what were the issues we needed to address to make her life worth living. We were never given a prognosis for Yvie, we never knew what her life span was expected to be. We lived for 10 years knowing that she could die at any time, but never knew when that time would be. But we didn’t know how to make her everyday worth something.
I remember Dr. Pat telling us that Yvie was a little girl that needed to be a little girl. She may have many medical conditions, many problems, but she was still a little girl. What we needed to focus on was that, was what we did need to do, to let Yvie know we knew she was a little girl that needed to be a little girl. With this, we were able to create Yvie’s “bucket list”. Given her life experiences were very limited, her list was as well. But her list was also very important. She wanted to go to the zoo again. She wanted to ride the train again. She wanted to visit her friends at school. And she wanted a big party. That was it. Simple, poignant and true.
We were able to provide all of these to Yvie in her last few months (without knowing those were her last few months). We planned the most amazing birthday party / fundraiser for her 10th birthday (to provide a wheelchair lift for our house). We had 200 hundred people coming to this party. But not Yvie. It was the day after we told Yvie about the party, and all the people that were coming, that she got sick. She ended up in the PICU at MGH fighting for her life. She spent 2 weeks there, on a ventilator, very, very sick. She did eventually come off the ventilator and come home. But only to pass away two days later.
Though this sounds like a sad story (and it is). It is also a very happy story. We firmly believe that Dr. Avi helped Yvie have a much more positive last few years because he believed in the value of her life. Also, the Palliative Care team, especially Dr. Pat O’Malley, helped us as a family, make decisions based on what was important to Yvie, and us as a family. It was only because of Dr. Pat that I could recognize when my precious baby girl had had enough, and was ready to pass on to the next world. Dr. Pat was on the phone with me when I was able to accept my daughter’s decision to not have to fight through the pain any more, and allow the natural course of life by crossing over to the next one. It is because of the Palliative Care team that I was able to do everything in my power to take care of my daughter while she was alive, and make every day worth living. It is also because of the Palliative Care team that I was able to recognize the moment that living was no longer the best treatment for my daughter.
What we have learned over the past few years is that unfortunately children will die. It is a sad, horrific, painful, heart-wrenching fact, but it is true. It is not nice, not neat and very messy. But what we did learn is that while we could have spent our time waiting for her to die, the Palliative Care team showed us how to show her how to live while still supporting our family as a family unit trying to deal with such a horrific experience. But without the Palliative Care Team, I don’t know where we would be today. Two years later, we still can remember some good amidst the bad. Some happy amongst the sad. We have learned that our family unit is important despite the difficulties. We are still a family that love and cherish each other for who we are, and where we are at any given time.
Please help us support Dr. Avi running the Boston Marathon in Yvie’s memory to support the Palliative Care Dept. at Mass General Hospital for Children. I have seen, and felt the incredible work they do, not only with my daughter, but with many children I have worked with since. There is no comparison to the work they do, and the quality of life they help provide to medically fragile children.
Visit the Massachusetts General Hospital Avi Traum’s Page to donate today.