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where they sent us for x-rays, ultrasound, and blood work. Her labs came back out of normal range, and the x-ray showed a circular mass on her lung, which they thought was fluid. She was diagnosed with pneumonia and put on antibiotics. To our surprise she actually got better! She started acting like her normal self. She still wasn’t bearing weight on her legs and wasn’t really moving them. Doctor said she was still recovering from the pneumonia, which in babies is painful in the abdomen, which is why they don’t move their legs sometimes. We were going to give her some time to recover. We went back for a follow up x-ray in 2 weeks to re check her lung. The “mass/fluid” had actually gone down, but was still there and her labs were better. Radiologist recommended another x-ray in 3 months to recheck. By 6 months Scarlett was actually starting to move her legs more, but they were still stiff. She wouldn’t bear weight on them, and during tummy time she just laid there and wouldn’t roll over or hold herself up. I called her doctor and told him something still isn’t right. We did the follow up on the x-ray and some more blood work. That was on Columbus Day – October 12th .
On October 13th her pediatrician called me to tell me the mass was still there and her labs were out of range. He at that point had already talked to oncology, and they were assuming neuroblastoma. That’s when life as we knew it was flipped upside down. We were being sent for a CT scan with sedation ASAP. UNM didn’t call us back for a whole week to schedule that. It seemed like a normal week – but there was a knot in my throat because we knew it wasn’t normal at all. We were still remaining positive that it wasn’t cancer and the mass was just a cyst on her lung. Her CT scan was finally scheduled on October 22nd. We weren’t even out of the hospital yet when her pediatrician was calling with the preliminary results. Our worth fears came true. It wasn’t a cyst, it wasn’t fluid on her lung, it was a cancerous mass on her spine pressing into her spinal cord and shifting the spinal cord to the right. The mass is between T2-T8. That’s why she wasn’t moving her legs. That’s why she wasn’t holding herself up during tummy time. That’s why our poor baby was fussy. She had an evil tumor in her spine. We were told oncology would be calling us to meet with our oncologist the next day to go over the next steps. We got to my parents house to go over the news. The nurse called and wanted us to come in the next day and to talk about being admitted. 30 minutes later the Doctor called us and wanted us to go the ER to be admitted immediately. They didn’t want the pressure of her spine to cause irreversible damage and possibly paralyze her. October 23rd she was scheduled to have a biopsy done, bone marrow extraction, and a broviac placed (a central IV line). 3 pm she went back for surgery, and they didn’t finish until 9pm. Scarlett ended up in PICU because her blood pressure went up during surgery and they wanted to monitor her closely. She did great through the night didn’t need oxygen, She definitely was in pain when the meds wore off, but morphine and Tylenol helped keep her comfortable. She’s been put on a steroid to relieve the pressure on her spine from the tumor.
Saturday they said we’d get to go back to our regular room on the Peds specialty unit. People were constantly in and out of the room, drawing blood, and checking vitals. Scarlett had an ultrasound done of her heart to make sure it was strong enough for chemo. She also had a hearing screening done because chemo can cause hearing loss. She will be monitored frequently to check her hearing. The oncologist was working her butt off trying to get the biopsy results with a positive neuroblastoma diagnosis, so that they could immediately start chemo. Scarlett was considered an emergency case because of the way the tumor was shifting her spinal cord.
On October 25th she had an official neuroblastoma diagnosis. Stage III Intermediate. She started chemo on Monday October 26th and handled it really well. On Tuesday they drew labs to check blood counts. Her blood work came back really low, and she needed a blood transfusion that day. She took the blood wonderfully and didn’t have any side affects. Wednesday was the last day of her first chemo treatment. She was doing really well – just grumpy from the steroids. We got some training done in the hospital on how to care for her broviac. October 31st we were discharged from the hospital for 21 days until round two of chemo. As of December and two rounds of chemo, the tumor has shrank 75%!! She had has amazing results! There is still a little bit of tumor on her spinal cord, but two more rounds of chemo, and she should be cancer free.
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