It never ceases to amaze us how our friendship connection has been weaved throughout our lives. We met in Elementary School at St. Jude’s the Apostle School in Atlanta, Ga. Back in 1992-ish we were on a Summer Swim Team called the “Sharks” and took it very seriously, then became obsessed with “The Dave Matthews Band” and all things shopping. Fast forward, we both attended different High Schools (where the State of Georgia stupidly gave us both Driver’s Licenses. ha!) and then different Colleges. Nonetheless, we always kept in touch. There’s just something special about people with whom you’ve grown up with. Neither one of us lives in Atlanta, Ga anymore (Jess is in Nashville and Heather is in Hilton Head, SC) but we will always have a special place in our hearts for the “A”.
In that spirit, we’re rolling out a NEW spotlight portion of our BLOG to highlight the women in our lives that inspire US to “Be the Good”. With our Atlanta roots always close to us, we thought the perfect person to highlight first would be our friend Nour Kelly. She lives in Atlanta, Ga with her husband and three boys. She is a St. Jude Alumni and also attended St. Pius High School with Jess. We’ve known Nour for a long time.
Heather had the privilege of interviewing Nour and her journey with her son Maddox. Maddox was diagnosed with Acute Lymphoblastic Leukemia in 2018. Maddox was only 4 years old when he was diagnosed. We couldn’t think of a stronger family to “kick-off” our “Be the Good” spotlight. Here’s the inspiring chat with Nour.
Heather Quinn (HQ): Maddox’s diagnosis has been met with a myriad of challenges. You mentioned that you’ve learned so many things along the way. We wanted to highlight you because your story can help other families that are just beginning this journey. What is one take away you would pass along to other families facing a similar challenge such as a Pediatric Cancer diagnosis?
Nour Kelly (NK): To anyone starting out in the journey, I would say take people up on their offers to help. I had a hard time accepting help at first and maybe still do. Similar to other mothers I know, I’m used to doing a lot of things for my family myself. I didn’t want to change that. I am DESPERATELY trying to hold on to and provide as much normalcy for our family as possible. Therefore, I am learning to accept help. I am even learning to ask for it! I know our journey is a long one. Unexpected hospital stays require so much support and a lot of last minute requests.
HQ: Yes, asking for help is such a simple gesture but so hard for many of us. Sometimes help can also be super overwhelming when you are dealing with such a big and scary challenge. How have you found balance?
NK: I was overwhelmed with the amount of people reaching out in the beginning. We received a lot suggestions on people to contact who had gone through something similar. On one hand, it was too much for me as I was still processing everything. And, it was also very heartbreaking and overwhelming to realize how many people this disease had touched. Everyone is different but I needed time to process and work through some of our own details as each diagnosis and journey can be so different.
HQ: That’s such great advice to seek help but also allow yourself time to process. Speaking of “processing”, how is your life different? You are a Mother of Three Boys (Maddox being the youngest) and ALL Mothers know, life keeps going. The after school activities, work, the day-to-day race doesn’t stop regardless of what the family is struggling with.
NK: Overall, I am shocked at how normal our life is. Maddox is still going to preschool on most days and is even playing sports. You would never know just by looking at him that he has Leukemia. He is still our lighthearted “goofball” caboose that’s always trying to make us laugh and putting on a show. During our last hospital admission, the Team was leaving our room (after rounds) and Maddox stuck his foot out from the bed and asked for a “FOOT FIVE”. Needless to say, we were ready to be discharged (ha!). Additionally, I’ve resourced out. I have found a couple of Facebook Groups that have been great resources for some questions that arise during “normal” days. While some of the information is frightening and heartbreaking, it is also helping me to be grateful every single day for our specific diagnosis and how well Maddox is doing.
HQ: I love that! The pictures you post on Facebook of Maddox are so endearing and his fun-loving spirit definitely shines through. I would image you have loads of “Teams” around you. Doctors, hospitals etc. How important are those relationships?
NK: To say we have met some amazing people is an understatement. Everyone at Children’s Healthcare of Atlanta (CHOA) is beyond AMAZING! They are all so sweet and willing to help Maddox and even ME! I remember telling Nick (my husband) that the Nurses were so compassionate towards me it was so helpful. It takes a very special person to be an Oncology Nurse or Doctor, that’s for sure. And then on top of the actual medical staff, their Child-Life Specialists and Social Workers have been a GODSEND to us. I’m ashamed to admit I never even knew these types of Professionals existed but will forever be grateful to all of them.
HQ: Wow. I’ve always heard amazing things about CHOA. Its nice to know firsthand that they are true! Any other organizations that stick out to you?
NK: We were immediately connected with the Rally Foundation here in Atlanta. They have been so welcoming to our family and even checked in with Maddox during our last hospital stay. We’ve been able to enjoy some of their events
HQ: You recently posted an adorable picture of Maddox in a full-on SuperMan costume. It looked like a professional shoot. Can you tell me about that? It is such an adorable picture!
NK: That organization is called “So Many Angels”. Their mission: to empower and inspire child warriors battling cancer, so that they can become whoever or whatever they want to be WHEN they grow up”. They are an awesome organization! I have realized just how important these organizations are because their funding is specific to pediatric Cancers. Unfortunately, most of the cancers and treatments leaving pediatric research only 4%. CURE is another one that we just love. There is always someone volunteering from CURE when we go to clinic.
HQ: We both attended St. Jude’s together and I love that your boys go there now. It seems that they school and Church has been a huge resource for your family.
NK: Maddox attends the parish preschool and his older brothers attend the elementary school. At the beginning of this journey, a fellow cancer Mom wrote this to me and it is spot on, “It is the most amazing experience to the feel the power of prayer-and you will”. I think I’ve been able to get through the last few months because of everyone’s prayers and love for my family. I truly feel them strengthening me. People I haven’t spoken to in decades have reached out to me offering their support, prayers or even sent a gift to Maddox! I can’t say enough how thankful we are to everyone and hope one day we will be able to pay it forward.
HQ: I think you are already “Paying it Forward” by speaking about your experience to help other families. What was one of your darkest moments?
NK: To be honest, our first Thanksgiving after his diagnosis I wasn’t very THANKFUL. I was scared, angry and heartbroken for what I knew was going to happen to my family. But, three months later, while those emotions are still very present, I’m choosing to be grateful. I’m grateful he is tolerating his treatments with little to no side effects so far. I’m grateful for our amazing team helping to cure my baby. I am grateful for our amazing community and my support system; I literally could not get through a single day without my tribe. I am taking one day at a time. There is so much that is unknown. I never realized how much this would affect our family. For my two older sons, I naively thought they would miss out on a few things but that this entire process would not go much deeper for them. That is not the case. However, as heartbreaking as it is to see them upset about their brother, I am choosing to believe it speaks to their character and love for their youngest brother.
Nour, thank you so very much for sharing your story with us. Your enduring spirit and honesty is a reminder that we must ALL “Be the Good” because many people are FIGHTING huge battles and we ALL need to support each other. We are #MADDOXSTRONG!
For more information about Maddox visit: https://www.caringbridge.org/visit/maddoxstrong