10 Dec Interview with Mandi Paris: One Mom’s Perspective
Friends, it’s about to get real, so take a deep breath before you begin reading this post. We recently asked Mandi Paris, the mom of our first ForeverWe ambassador, Mary Elizabeth, to share some thoughts about her experience with childhood cancer. I asked hard questions, and she answered them truthfully–both transparent and raw. She held nothing back. At first I was surprised by how open she was with me, since we’ve only met in person one time. But people are relational, and every story needs to be told. Even the painful ones. The heartbreaking ones. The gut-wrenching ones. That’s why we’ve invited you to join the conversation. This story is about you, too.
1. How did you learn that ME had cancer? Mary Elizabeth was a beautiful, vibrant 11 year-old girl. One day we noticed she was more tired than usual and she had bruising on her shins. She complained of some headaches and stomach aches but we wrote this off as normal preteen growing pains. We did take her to the doctor, but they also thought she was fine. After a trip to the beach she still didn’t seem herself, so after returning we made a trip to urgent care and blood work was done. The doctor there still felt she was fine. The next day we got the news that would shake me to the core.
2. Do you remember your initial feelings? When I got the call that my child most likely had leukemia and I should get to the hospital ASAP I literally couldn’t breathe. My husband was walking in the door at that exact moment and could see by the look on my face something was terribly wrong. We grabbed my daughter and told her we were going to the hospital for tests but didn’t tell her what we thought until we had more answers. We tried to stay calm. At the hospital we held on to the small hope that the tests were wrong. And if it was leukemia, isn’t it very curable now? Hasn’t science come a long way? Well, yes and NO! We found out there are all different subtypes of leukemia and we unfortunately had the most rare and hardest to treat type, AML. When we told ME, she told us not to cry that she would be ok. She has been strong and brave throughout this whole long, terrible process.
3. How did you tell your younger kids about what was happening? As for telling the kids, we just sat them down and told them their sister was very ill and it was serious. But as a family we would get through. Her siblings have been supportive, although it is very difficult being separated for such a long period of time. Also, we are very close and I have been out of the house 90% of the last 8 months so that is hard. When we are together, I try to make the most of it. We just try to stay positive and talk a lot and be strong for each other. These past holidays have been difficult. Missing usual family traditions and family fun has been hard.
4. What kind of questions did they have? They asked if she was going to die. We said we would do everything in our power not to let that happen. Our 7 year-old seemed pretty unfazed and loved being chosen as her BMT match. He took it hard when the BMT failed and we had to reassure him it had nothing to do with him. We told him he was still our hero and did something very special for his sister. Our 9 year-old has taken it a little harder. The girls are best friends and miss each other terribly.
5. We once asked Mary Elizabeth what she wanted people to know about her experience. She said, “It’s just so hard.” Would she still say that today? The chemos are very harsh. They wreak havoc on the body and much of the damage is irreversible. It can cause organ damage, and my daughter will most likely be left infertile. But what other choice did we have? We soon learned chemo was not on the top of our worry list. There was blood and platelet transfusions, constant pokes, biopsies, hair loss, infection, line replacement, depression, allergic reactions, anxieties, fears and on and on and on. We stayed months in the hospital away from family and friends. I cannot even describe in words what this journey is like for someone unless you actually live it. Having an innocent child suffer and fight for their life on a daily basis is emotionally draining. Having to miss the everyday joys of childhood is gut wrenching. It is unfair. I would say this has gotten harder and it hasn’t gone as planned by any means. But that is ok I guess as long as we get home and healthy at some point.
6. What do you want people to know about your experience? What would your kids like people to know? I just want ME to gain her childhood back and get to be a kid again. She can never erase these memories unfortunately or fortunately but hopefully she won’t be too scarred by them and can grow into a better stronger person. Hopefully we all can. We are all faithful, strong people. But something like this definitely rocks your faith. If you can make it through this, you can get through anything! ME rarely complains or is frightened. She is positive most of the time. She focuses on the future. She just wants to be a normal kid. She wants to give back and help others. We focus on that and that keeps her mind off of her own problems.
7. What is the one thing you feel like you need most from your supporters? It is hard on a marriage but having a supportive husband who can be in Memphis with us makes it much easier. His job has been understanding and that helps tremendously. We feel pretty secure financially and with our support back home so we don’t have that stress-so we are blessed in that way. We just talk through our feelings and hold each other’s hands and wipe each others tears. I believe it is true that neither partner is strong at the same time all the time. One has to be there to hold the other one up. That is why you work as a team. I seriously don’t know how single moms do this alone. As a friend, the best thing you can do is never leave. Just be a support. Don’t try and understand. You can’t. Just be there, listen and wipe your friend’s tears. Call and check in and make her laugh when she needs it. Grab her a cup of coffee or cook her dinner. Those things mean the most. You can’t take the pain away but you can ease it. One day you will need your friend and she will be by your side just the same.
8. What is the one thing you miss most about your old life? Sometimes it is surreal and seems like it is not my life. I don’t want to accept it sometimes. I just want to go back to my everyday old problems–they were nothing. But it is a nightmare you cannot escape, especially when you are in the middle of it. I pray when we get home we can feel somewhat normal again, but I hear the fears never really go away.
9. What are three adjectives you would use to describe Mary Elizabeth? She is sweet, but stubborn and feisty at the same time. She knows what she wants. She has been through things that would make most grown men cry and she doesn’t flinch. She will be ok. We are open and talk a lot about any and everything. But she knows this is hard and awful but the end is in sight and the prize is wonderful. She really is an amazing kid. She has always been something extra special. I always knew from birth this spunky child had a purpose. Even back then I believe God was preparing us for this fight. You can’t win this unless you have the fight in you to beat this.
10. Despite all the terrible, can you tell us some good things that have happened as a result of ME’s diagnosis? I don’t think this journey happened to us for a reason, but I think we can find a purpose in our journey. ME had a failed BMT from a perfect matched sibling and we are now at St. Jude preparing for BMT #2. This is a path I wish for no one. Unfortunately around 46 children today will get diagnosed with cancer and 7 of those will die. I have since found out that only 3-4% of federal funding goes to research childhood cancer. This is outrageous! And I will fight for change. Our kids deserve better. I will fight for cures and research. I believe they are out there and within reach. The funding and awareness needs to be there.
11. You have been a huge proponent for agencies like Rally and Cure. Even if you didn’t have a child with cancer, why would you want to support these organizations? Now that my eyes are open I feel it is my job to spread this awareness to others. What I learned about leukemia was that science has not advanced very far at all. I can see this awareness growing and reaching out in our community more and more. It is a wonderful thing. But we still have far to go. I will always support organizations that help families with a child suffering with childhood cancer. It is a devastating time in many ways. And I will support organizations that give to research. My goal is to do all I can to make a difference and help save lives. Even though we have been through so much we still feel very blessed. We have been given much support and we want to give back any way possible.
12. Complete this sentence: Forever We…..(are, is, can, will, etc.) ForeverWe is an organization that allows ME to give back to others going through what she is experiencing. She is a giver and likes to help others. The doll comforts her and she hopes it will comfort other children as well. She wants all of her cancer friends to have one. As a ForeverWe representative, I feel it is important to just be honest with your feelings and help others. I think childhood cancer has been in the closet too long. Without talking about it and making people aware we can’t make a change. ForeverWe can share the stories and help bring awareness and change. Honesty is good. People appreciate that and can relate to that.