WHY US?
A year ago, Sarah and Wajahat received the devastating diagnosis that their two-year old daughter had stage 4 liver cancer. Sarah’s reflection, after a year of unfathomable challenges, is the definition of grace and gratitude. Here we are today -- several chemo cycles later, post liver transplant with an excellent functioning liver in Nusayba, now a family of five, living in a world with this devastating pandemic, reminded of life and death constantly, quarantined at home, emotionally and physically exhausted -- but in complete awe and full of constant gratitude as Nusayba gets back her hair and her spunky personality, as Ibrahim matures and helps take care of his two little sisters, and as Khadija tries to roll over and smiles and giggles. Being together at home for us (versus being split up and in and out of the hospital) is an absolute privilege and something, I pray, we never take for granted.Waj and I never asked "WHY US" when we found out about Nusayba's condition or as we went through the many complications and setbacks. We remained steadfast in our gratitude for the things we did have in our lives and in our belief that the world doesn't owe us anything, so there's no benefit for us to ask that question. But, we have found ourselves asking "WHY US" time and again in a different way. Why are we so blessed to have been given a wonderful daughter like Nusayba? Why are we so blessed to have health insurance? Why are we so blessed to have such excellent healthcare teams taking care of Nusayba? Why are we so blessed that Nusayba's chemo is working? Why are we so blessed that over 500 people signed up to be a liver donor for Nusayba? Why are we so blessed that Shawn stepped up (after coming across Waj's twitter request) and ended up being such a perfect liver match for Nusayba? Why are we so blessed that we received so much love and support from such thoughtful family/friends/colleagues/students? Why are we so blessed that everything so beautifully came together - science, kindness, prayers - to save our little girl? While we know that the road ahead isn't easy for Nusayba (lifelong immunosuppressant meds, side effects of those meds, risk of liver rejection, risk of cancer recurrence), especially in light of the current pandemic, we recognize our blessings and fortune that she's made it this far and is thriving.Although I never wish this experience on anyone and I hope we never have to go through an experience like this again, I hope I never forget the feeling of helplessness and humility. I hope to carry those feelings with me throughout my life, use them to make me a better person, and use them to contribute good towards the world. I hope to never take anything for granted and to appreciate every single moment, even the stressful ones.The Medstar Georgetown Transplant Institute where Nusayba had her surgery is raising funds to build up a Center for Living Donation to provide support for living donors. It will be named on behalf of Nusayba Ali. Please consider supporting the Center through their website, and help spread the word. Wajahat wrote a beautiful piece for the NYT, "My Toddler Survived Cancer. Then Came the Coronavirus," on lessons they’ve learned from Nusayba's cancer experience as they apply to dealing with the Coronavirus.
Sarah Kureshi (MD, MPH) is Assistant Professor and Family Medicine physician at MedStar Georgetown University School of Medicine.
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