In March of 2005 I was a junior in high school. Having just finished basketball season, I was getting ready for softball to start with my biggest worry being whether or not my worn-out glove, “Big Daddy”, would survive another year. At the time, I thought my swollen fingers were just broken from another tough season of hoops, the fatigue because I wasn’t in good enough shape and the swollen eyes maybe conjunctivitis. Little did I know that my body was attacking itself and my kidneys were failing. When things rapidly worsened, my mom convinced me to go to the doctors and before I knew it I was admitted to Children’s Hospital Boston. After a week of blood tests, MRIs, EKGs, catheters, biopsies, and a myriad of other fun things, I was diagnosed with systemic lupus erythematosus (SLE) and stage four nephritis (kidney disease caused by lupus). On March 27th, Easter Sunday, I received my first dose of chemotherapy and pulse steroids, with my parents and four siblings all snug in my room the entire time. Although my dad calls this time “the week in hell”, I’ve never had such a wonderful Easter as that one.
The next morning I was discharged, taking with me flowers, cards and balloons, a new disease, new medications, a new diet and new friends. After hugging and thanking the amazing nurses and doctors, my parents put me in a wheel chair and rolled me out to our car. As we pulled away I started to cry. Not tears of sadness, anxiety, or anger for having lupus, but tears of joy for having been blessed with the miracle that is Children’s Hospital Boston.
For the 7 years I was treated at Children’s, my doctors helped me understand lupus and make the necessary adjustments so I can still enjoy life. Lupus has limited what I can do, however, I would not have accomplished anything without the love and care of my doctors at Children’s. I was 17 years old when I was diagnosed and was seen at Children’s until the age of 23. My doctor’s at Children’s were gracious enough to see me through college, but they thought it might be a little awkward if I was still being treated there in my 30s (which is the option I would have chosen). Unfortunately, my transition to adult care has been even more difficult than my fight (or dealings) with lupus. I can honestly say I would take a life with lupus any day over a life without the friendship of my amazing doctors at Children’s. These doctors are, and forever will be, an integral part of my life.
Dr. Robert Sundel was my rheumatologist and Dr. Nancy Rodig was my nephrologist; both were with me since day one. These two doctors are the most incredible people I have ever met and they are the reason I have come so far since being diagnosed. Even though I don’t see them now, they will always be my doctors. Every decision I’m faced with I will first think “What would Dr. Sundel want me to do?” And even though I sometimes did the opposite, I know he’s always right. And if I go to play rugby, I’ll remember the support I got from the petite Dr. Rodig saying, “From a kidney perspective, that’s fine. I played rugby in college, you’ll love it!” The list of my amazing Children’s doctors continues: Dr. Anna Minster who referred to me always as “my Jessie”, Dr. Erika Fullwood, Dr. Yuan-Chi Lin and Dr. Marc Laufer. The love and dedication of these doctors is the foundation of Children’s Hospital.
Although I am no longer a patient, I will always have undying love and admiration for Children's and all the wonderful people that make it such an inspiring place. It is impossible for me to thank Children’s for everything they’ve done for me during the 7 years I was a patient. So, I will be running the Boston Marathon for Children’s Hospital in an attempt to give a little back to a place that has given me so much.
For as long as I can remember I have wanted to run the Boston Marathon, however, when I was diagnosed with lupus I thought this would remain a dream. I never gave up though, and told myself that lupus would not define me. Rather, I would define lupus. After completing 3 half marathons on the Miles for Miracles team, I finally felt ready to take the next step. And when last year’s bombings occurred on Marathon Monday, it only reinforced my desire to run the Boston Marathon. Throughout my training, on race day, and especially when I’m crossing the finish line on Boylston Street, I will be thinking of, and praying for all of the first responders, volunteers, the many victims injured and those killed in the Marathon Bombings. The spirit of Martin Richard, Krystle Campbell, Lingzi Lu and Officer Sean Collier, will be with me every stride I take. And all the injured victims, especially the 10 children taken to Children’s will be on my mind and in my heart. This year’s marathon will show the world the resilience and strength of the incredible city of Boston. Our Boston.
This is just my story. There are millions of others. With your support, every dollar given will help Children’s continue its legacy of bringing hope to countless children and their families. Thanks for your help and God Bless!
Children’s Hospital Boston-Strong!
Donations can also be sent to:
Jessie Russell, 50 Union St., West Bridgewater, MA 02379
**Checks made payable to Children's Hospital Boston.
**Donations will be collected up until May 21st, 2014.