Warrior Wednesday Spotlight - Natalie Jordan
Imagine having your first child and all of the dreams that you have of becoming a mama for the first time, like, going on playdates, mommy and me classes, watching all of the first milestones, making new holiday traditions and having family around to watch your child grow up. Now imagine all of that being taken away from you in a blink of an eye.
Sweet little Natalie was diagnosed at the very young age of 9 months old with Acute Myeloid Leukemia on April 1, 2022.
Natalie's symptoms started with petechiae which are formed when tiny blood vessels called capillaries break open under the skin. Natalie's skin became very pale, and had a fever that wouldn’t go away. She became very lethargic so her parents made a pediatrician appointment. The night before Natalie's pediatrician appointment Natalie ended up having a bloody nose which we now know was caused by her having low blood counts. Natalie's parents were expecting some sort of virus, ear infection or maybe Covid but never did it cross their minds on what they were about to hear. After a 2 minute exam the pediatrician told us Natalie was exhibiting all of the symptoms of leukemia, and he was sending Natalie immediately to the local ER, once there they did a blood test and an ultrasound. When the tests came back they ER ended up sending the family by ambulance to Boston to be seen at Mass General Hospital. Natalie's blood counts were so dangerously low she ended up needing several blood transfusions. After exhausting all other options, they decided to put Natalie under for a bone marrow biopsy and it was then they saw that she did in fact have Leukemia, a Leukemia called Acute Myeloid Leukemia (AML).
After receiving the news and finding out Natalie had a rare and aggressive form of leukemia her oncology team explained to her parents that they need to start treatment immediately. Natalie had surgery to place a central line in her chest and then started high dose chemotherapy that same night. She did 5 rounds of chemo, where she had to have a bone marrow biopsy in between every round of chemo. Natalie and her parents ended up spending over 6 months in the hospital. Over the course of the 6 months Natalie battled sepsis twice with no immune system after the chemo doses. During her first bout of sepsis, she had to have her central line removed as the bacteria was growing inside the line, and then had to have surgery again to place a new one back in. Natalie's mom Jenna said “The scariest moment we had during treatment was when she had sepsis the first time. We were in the clinic about to be admitted inpatient for the 2nd round of chemo. Natalie spiked to a fever of 104.9 within 30 minutes. She threw up all over herself and me and the bed and was shaking. Within minutes we had probably 6 nurses administering medication and trying to get her comfortable and stable.” During the course of treatments Natalie had to be placed on TPN (liquid nutrition) when she had gone 10 days without eating. Natalie also had to have many blood and platelet transfusions while her counts recovered after each round of chemotherapy treatment.
Jenna said that “With Natalie being diagnosed at only 9 months old, we hadn’t even gotten the opportunity yet to do anything together as a family. We were just figuring things out as new parents. There are so many difficult parts of having a baby in the hospital receiving chemotherapy. We had to make hard decisions for her and advocate for her. My husband and I had to share a hospital cot for 6 months, but we would have had it any other way.” The milestones that most people take for granted were all being taught to Natalie in the hospital room. Jenna said “she learned how to stand and crawl in the midst of everything. We even celebrated her first birthday in the hospital.” Jenna said that their family lost most of 2022 due to cancer and the hospital stay, the majority of that being our summertime. Natalie was unable to play outside or play with other kids due to her diagnosis until her immune system was up into a more normal range.
Once Natalie's immune system was up and running Jenna and her husband wanted to make up for lost time and that's where Campaign One At A Time came in to help. Jenna said “It was a huge challenge for us to do a Dream Trip for Natalie because of her age. Most organizations only grant wishes for kids 2.5 or older. We really didn’t want to wait to take her trip as we fear of relapsing constantly, and she was definitely worthy! Natalie LOVES Mickey Mouse and she watched the Disney channel daily in the hospital, so it was a no brainer for us to pick Disney World for her trip! Thankfully One at a Time didn’t hesitate to help us make her dream a reality! They gave us our very first ever family trip together, and we are forever grateful for that! It was a joy to watch Natalie on her first plane ride, first trip to Florida, first time at Disney World! We will cherish the photos forever!”
Natalie is currently done with treatment! Natalie's family now drives down to Boston once a month to check her blood work to make sure everything stays stable. This September Natalie will be “graduating” to every other month for her checkups! Natalie's parents are still unsure about the side effects of what treatment may have caused due to Natalie being so young. However, she is developmentally delayed due to being in the hospital for so long at such a young age. Natalie works with therapists weekly to help her catch up and hit the milestones for her age.
When we asked Natalie's mama Jenna what is one thing you would want someone to know about your child's diagnosis? Jenna said “I think the most important thing to know is that it feels like it can never happen to you, but it can. Look for the signs! Also, it’s so important to help fund research and help the families who are going through it. It’s a long, difficult road that requires lots of support! And no more children should be fighting for their lives!”
If you would like to follow Natalie’s journey you can find her mom Jenna’s Instagram at @jennalynjordan
Written by Tracy Croxen