Our sweet baby Lennon was diagnosed on July 13th, 2023. It was a Thursday and a day that truly changed our lives forever.
Our Lennon picked up every virus for several months and it just seemed she was constantly sick, with her sister in school that’s not atypical, but it just seemed like as soon as we got her well, she would get something else.
But two weeks to the day she got diagnosed, she started having random fevers. No other symptoms just fevers and they would be fairly high. The first one started on a Thursday and it would just come and go, we watched it till Monday and her pediatrician got us in that morning. By that point, the fevers went away. They did blood work and everything was ok, her labs showed inflammation but right in line with what would be a mild viral infection. Nothing that would be an immediate concern. Our pediatrician is truly amazing and she was absolutely on top of everything. She wanted to watch and see if the fevers came back and we would go from there. The fevers would randomly come back for a day and then stop for several days and continue a weird cycle. And again no other symptoms. It was so strange. We were getting ready to go back for a recheck and Lennon woke up that morning and couldn’t use her right leg and there hadn’t been a fever for a couple of days. Her pedi took one look at her and told me to take her in, she was thinking it could be an infection in the joint due to what we thought was a viral infection.
We spent so long in the ER and by this point her labs were off the charts showing an infection, they did ultrasounds and sonograms of the knee, leg, and hip trying to see if there was any fluid, etc. but couldn’t find anything. They started the admission process to do a sedated MRI the following day when the PA reached out to one more person to explain the bizarre symptoms and to get a second opinion. That person said they only had one other kiddo who presented the same way and ordered another ultrasound but this time of the adrenal area above the left kidney… and that’s when they found it. She had a 3×4 inch tumor in her tiny little body. And they knew pretty immediately it was Neuroblastoma.
After so many tests and biopsies of the tumor, it showed Lennon carries the two unfavorable genes and her cancer is the most aggressive form of Neuroblastoma. It already was metastatic to two areas, one in the right knee and the other in one vertebra.
Lennon has gone through 5 rounds of chemo, two bone marrow stem cell transplants accompanied with the highest dose of chemos, 12 rounds of radiation, and now 6 months of her hopefully last stage of immunotherapy/antibody treatment. She has spent over 200 days in isolation, and in the 10 months so far she’s spent more time in the hospital than out of the hospital.
Cancer has changed our entire lives. Our life will forever be, before cancer and after cancer.
We are a really close-knit family and share everything. Overnight it’s like we were separated. One of us was always with Lennon and the other was with our 7-year-old. And then we would switch. It’s been the hardest year of our life, but we are just so thankful to have Lennon here with us. Neuroblastoma is so unbelievably aggressive and sometimes it’s caught too late. We’re just thankful she’s responding to treatment.
Lennon’s the strongest girl. We call her our Giant Slayer like David in the Bible. She is small but so mighty and even though the odds are stacked against her, we believe she will conquer this giant!
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