Meredith Salazar was part of our 2018 Kidd’s Kids trip with her parents, Brittany and Francisco, and her younger sister, Kiley. She had just been diagnosed with systemic lupus erythematosus one year before the trip. This is the story about how Meredith’s life was changed on Christmas Day 2017.
It was Christmas morning 2017 when Meredith received her diagnosis of systemic lupus erythematosus, which is the most common form of lupus (she was just 9 years old). She had been sick for over a month before doctors were able to diagnose her. (Lupus is a very complicated disease and affects people in many different ways, so this makes it difficult to diagnose – many people can go years before learning they have lupus). Meredith’s symptoms started as joint pain that would come and go. Shortly after that, she began to lose weight because she was not able to eat without having pain and she had some slight discomfort in her chest. The chest pains became worse, and it turned out she had pneumonia. After she started medication for the pneumonia, her health declined even more. She ended up with a high fever and was back at the pediatrician where she tested negative for the flu, and they immediately sent her to the children’s ER. Meredith was admitted to the hospital that night because her blood tests were abnormal, and she had so many other tests completed on her little body to find out what had affected her so severely. After her official diagnosis on Christmas, things began to decline even more drastically than before. Almost all of her organs were affected – it had taken a toll on her heart, bladder, lungs, and skin. The worst damage was to her kidneys and brain, and she ended up in the ICU. She spent a couple weeks in the hospital, and when she was sent home she continued her treatments back and forth to the hospital for 7 months.
Everything changed for Meredith and her family after her diagnosis. Brittany and Francisco went from having a healthy child that went to the occasional doctor’s appointment to having a child with a chronic illness that will never go away until a cure is found. They now had to be more cautious and nervous about things they used to not think twice about. With Meredith’s now weakened immune system, they try to avoid germs as much as possible. Something as small as a cold could cause her to potentially flare up and turn life threatening. They used to enjoy time outside during the summer, but have to be more cautious in the sun – which can also cause flare ups – so they try not to be outside for more than 30 minutes. Physical activity is now a lot harder on her joints, so she often has to sit out during activities she used to enjoy such as PE class at school. They are learning how to live with Meredith’s diagnosis, and every day learning to enjoy things differently as a family.
Meredith’s treatment plan was very aggressive after her diagnosis. The treatments included Cytoxan chemotherapy and a high dose of steroid infusions for 7 months, and numerous hospital stays and a home health nurse. She was taking over 25 pills a day. As of now, she is still taking over 15 pills a day to manage her illness. She also has a full medical team that helps her maintain the best health possible. Ten health professionals she sees routinely are her pediatrician, rheumatologist, neurologist, nephrologist, ophthalmologist, psychologist, psychiatrist, endocrinologist, immunologist, and a physical therapist! One of the scariest things about lupus is the flare ups and working to avoid them. Even with all the treatments, she can flare up again and just repeat the process over. Some lupus patients have aggressive treatments such as chemotherapy numerous times throughout their lives. The uncertainty is horrible, so they do their best every single day to try and avoid anything that could cause a flare up, such as infections, stress, and the sun.
We asked Meredith what she wished others knew about what it’s like to have lupus, and here is what she said:
“I want people to know that lupus is real. It is not just a little sickness that comes and goes. Lupus is like a monster that lives deep inside your body. You can try your hardest to make it happy and not upset, but sometimes it just gets really angry and starts attacking the body. I try to do my best to stay healthy and safe from a flare, but you never know when lupus will strike. One positive thing about lupus it is has shown me how strong I truly am. I just try to keep positive every day and keep fighting. One day I pray that there will be a cure so that lupus warriors everywhere, including me, will be healthy and live a lupus free life!”
Art has become a huge part of Meredith’s life now. She has always loved art and fashion, and now it has become a form of therapy. She is so creative, and has really strengthened her skills significantly since being diagnosed. She likes to sketch and paint using watercolors, pastels, and acrylics. She also loves video games and has recently started drawing characters and designing their clothes.
“Lupus is horrible, and I wish every day I could take this illness from her. There have been so many times that I have been so extremely angry thinking, why her and not me? It is not fair to see your child fight such a disease. To wake up hurting every day, to see her take SO many pills daily, to see her lose friends and relationships she once had, and to see the physical and emotional affects it has had on her – all awful. I try to do everything I can as a parent to ease her pains and make life more enjoyable. Awareness is something very important to me and is truly the most helpful thing I feel I can do. Educating and advocating hopefully will equal a cure sooner than later. My biggest wish in life – a cure for lupus.” – Brittany Salazar, Meredith’s mom
The Salazar family on their Kidd’s Kids trip experience: “We feel so extremely blessed that we were able to go on the 2018 Kidd’s Kids trip! It was a complete dream come true for our family. That year was such a hard year for Meredith will all of her treatments and hospitalizations. The Disney trip really let us all be able to finally enjoy ourselves. We didn’t have to stress about traveling, money, food, hotel, souvenirs, waiting in lines, doctors – NOTHING! We were treated like VIP and each one of us had the best time ever!! It was also so amazing to be surrounded by people that understood how life is with a sick child. We were able to build relationships and make forever friends and family with some of the most incredible people. We love all of our Kidd’s Kids family more than words can express, and are forever grateful for all that they have done for our family.”