Tony Lee, an outstanding longtime volunteer and parent advocate with The Leukemia & Lymphoma Society’s Desert Region, reflects on his daughter’s cancer experience and his commitment to curing blood cancers.
When people ask me about my involvement with The Leukemia & Lymphoma Society (LLS) I always pause to reflect on which story to tell. My story truthfully though has meant so much to me, my family, our friends, and our community. My first introduction into the world of blood cancer was when a very close friend of mine from college was diagnosed with leukemia. As someone in his mid-20s, this was my first time experiencing a life-threatening medical condition for someone of the same age. My friend Greg was someone we all loved and truly admired. But more is to come about Greg.
It was because of Greg that when someone asked me to help with their LLS Man & Woman of the Year campaign that I said yes Because of my connection with the LLS mission, I then helped on two other campaigns in the years following. It was then that I had decided to be even more involved and more impactful with LLS. My personal connection however grew even stronger when my daughter Sophie was diagnosed with myelodysplastic syndrome.
Sophie has always been an energetic and fun-loving little girl. She was always on the move and curious about everything around her. At about 18-20 months of age, Sophie had her first episode of leg pain at night where she was crying. She was having some difficulty with standing and walking. Once she settled down at bedtime, she woke up the next morning without any more complaints. She would then have on and off leg pains, not consistent in location or with activities but usually at night starting around dinnertime or bedtime. She was checked out by her pediatrician and rheumatologist and everything seemed to be fine so we thought it was growing pains she was experiencing.
At age five, Sophie was still complaining about occasional leg pains and we were referred to a hematologist for more tests. By that time, she had been getting yearly blood work since her initial episodes. The blood work from age 2-5 never really worsened, which was why we were just monitoring Sophie. During that time, she also was like any other 5-year-old child. After the first few series of test results were all normal, her hematologist decided to proceed with a bone marrow aspiration in August 2015, which resulted in her diagnosis of myelodysplastic syndrome (MDS) through her genetic makeup. She did not have any prior symptoms of frequent or prolonged colds and infections for us to suspect otherwise. She was not bruising easily nor was she having multiple infections. So, the diagnosis was a shock to us all. With a diagnosis of MDS, we were told that the only treatment option would be a bone marrow transplant, the earlier the better before her MDS manifested into leukemia, which then would be harder to treat. So, the decision was to either wait and see or start treatment on a young asymptomatic 5-year-old girl.
Once we decided to proceed with the transplant, the search for a bone marrow match was on! As you all know, time is of the essence as we did not know when or if the MDS would advance into acute myeloid leukemia (AML). Sophie’s medical team searched all the typical registries in the United States, Europe and Asia. This was very important for us as Sophie’s background is Taiwanese. We had learned that Asians and other minorities are well under-represented in the registry. To help our cause, we had friends that held drives to get people on the registry. These drives focused on people of Asian backgrounds in San Francisco and Arizona. We knew that a strong bone marrow match was the best option for Sophie, however, with her not having any direct siblings and being Asian, her chances were not as high as others.
Unfortunately, a worldwide search and local efforts from our family and friends were unsuccessful. Fortunately, Sophie’s BMT team did find a cord blood match which would mean a longer engraftment period, hospital stay, and more difficult recovery period but we needed to proceed. She was pulled out of Kindergarten about halfway through and was admitted to Phoenix Children’s Hospital on February 23, 2016. So please understand that we now just took an otherwise healthy little girl who was not feeling sick or symptomatic and started her on a path of chemotherapy, immunosuppressants, and multiple medical procedures.
Sophie did great with chemotherapy to wipe out all her diseased cells and the cord blood stem cell transplant went smoothly. Shortly after that, she started to lose her hair, had less energy, and slowly lost her appetite. She also developed severe graft versus host disease (GVHD) of her gut and skin, which also was very scary since it took a long time to get that under control. After almost 15 weeks in the hospital, Sophie was finally cleared to go home. Even though she still has GVHD of her gut and skin as well as being on TPN, NJ tube feeds for nutrition, and a never-ending list of medications, she was able to be home with home health follow-up, twice-weekly clinic appointments, and monthly ECP treatments.
For the past five years, Sophie and our family have had to deal with the transition from active treatment to “normalcy.” Sophie is now 11 years of age. She is back in school. She has started playing ice hockey and is as energetic and talkative as ever. She is now five years post-transplant and is 100% donor cells. Sophie has embraced being a survivor and an ambassador. We feel fortunate that Sophie has been given a second chance. Our family has been fortunate to participate in many of LLS events in Arizona. Our family also is fortunate that we have a second family in LLS. The LLS staff, especially in Arizona, has been truly welcoming and oh so helpful. Sophie has enjoyed going to Light The Night, which has been a great way for our family and friends to share in the LLS family. For Light The Night, I am able to raise all three lanterns. I raise one in memory of my friend Greg Ferris. I raise one as a supporter of all blood cancer patients. More importantly, Sophie is able to raise a white lantern as a survivor, thanks to some of the research funded by LLS.
While Sophie carries the torch in the family as a survivor, I try and do my part as a parent and advocate. In honor of Sophie I have hosted a golf tournament. Including this year’s 6th Annual Sophie’s Day Golf Tournament, we have raised over $140,000. I would not have been able to do this without the support of LLS and amazing volunteers. I continue to also volunteer my time with LLS directly as Chair of the Board of Trustees for the Desert Region. By serving on the board, I am able to share my personal experiences allowing me to help further the mission of LLS. I feel that our family can let others know how LLS is helping to bring an end to blood cancers.