On January 17th we were blessed with our beautiful Amelia Rose. She decided to show up three weeks early because she was too excited to see us. We brought her home two days later but sadly found ourselves being admitted back into the hospital two days later. Amelia had jaundice. We were told it was normal for premature babies to develop jaundice and need photo-therapy. After one night in the hospital her levels became safe enough to bring her home. We were so excited to get to know our baby. After a month passed I noticed Amelia felt a little hot, after taking her temperature I saw it was at 100.6. We immediately brought her to the ER, since she was so young they wanted to run tests. After being there for 10 hours we were told she had a chest infection so they treated her with antibiotics and sent us home that night. We noticed a few days later her breathing was contracting. I used a doctor webcam hotline to see if I should bring her into the hospital, the doctor told us to take her as soon as possible. We waited 5 hours before a doctor came in and told us it was just a side effect of her chest infection and her breathing should go back to normal once her infection was gone. We were sent home that night and told to give it time. Over the next few weeks everything seemed normal and she was reaching lots of milestones. Around 2.5 months old she had a doctors appointment and we were told she had dropped from the 25 percentile on the growth chart to the 3rd. We were very confused and upset over this information but it became our mission to get her weight up. Since she was breastfed I spent most of the next week with her in bed getting her to eat more. We felt really confident that she had gained weight. We went to our appointment and were told she had dropped even more weight, she was now below 1 on the growth chart. The doctors told us to try cup feeding her after each feeding, and they scheduled an appointment with the lactation consultant. We tried cup feeding for the next few days and she hated it, when we saw the lactation consultant she had told us Amelia wasn't taking in enough milk at the breast. They had us stay in the hospital to run tests on her and see why she wasn't gaining weight. We found out that she was anemic and they gave us iron medicine to give her everyday. We ended up staying in the hospital for a week because the doctors said it would be best for Amelia to switch to bottle feeding and wanted to monitor her weight. This broke my heart because I loved my breastfeeding relationship with her, but I knew I had to do what was best for her. After staying at the hospital for a week her weight had gone up, so they sent us home. We had a follow up appointment in two weeks. After being home for a week we had noticed Amelia was very pale and sick looking. She had developed these scabs all over her head, forehead and eyebrows. At our appointment the next week we asked the doctors about these scabs and they told us they were cradle cap and prescribed some medicine for it. We also mentioned the paleness of her skin and were again told it was from her anemia. They took more labs that day and called us the next day saying her anemia levels were even worse, and upped her dosage of the medicine. She wasn't looking any better and her breathing had not gone back to normal like it was supposed to. My husband and me were getting worried and frustrated because something didn't feel right. At our 4 month appointment, a week later they weighed her and her weight had dramatically dropped again. We got admitted to the hospital again, because her breathing was very fast. We were told they had called CPS to look into our situation because they felt like we were not feeding our daughter. We were so angry, because we knew something was wrong and they couldn't figure it out. After taking a chest x-ray they saw she still had a chest infection, but they weren't exactly sure what kind of infection it was. Our doctor had told us they were looking into the possibility of it all being connected. They sent a dermatologist up to our room who took a biopsy of one of the scabs on her head. The doctors wanted to run more tests but didn't have the necessary equipment. The next morning we were medvac to JBLM in Washington. The doctors told us to relax that day and they would start running tests the next day. The next morning came and they did many tests. She ended up getting more x-rays, MRI, CAT scans, biopsies of her intestines/bone marrow and lots of blood work. We were told since she was so anemic she needed a blood transfusion, she got one that day. The doctors weren't sure what was wrong, and they wanted to wait for all of her biopsies before coming to any conclusions. about four days later we were visited by an oncologist. He told us all of her symptoms matched with Langerhans Cell Hystiocytosis, which was a very rare cancer. Normally affecting 1 in every 200,000 people and even less in infants. Our hearts were instantly broken. He told us she was most likely born with it based off of the past hospital visits. He discussed her treatment plans which included lots of oral medication and chemotherapy once a week. They told us she needed to get a port due to the amount of times they would need to draw blood and infuse her. She went in for surgery a couple days later to get her port, and received her first dose of chemo the next day. They told us since she was stable we were able to take her back to the hotel and come in every Wednesday for her chemotherapy. Although our daughter Amelia was diagnosed with cancer we felt reassured that we finally knew what was wrong with our baby. She has gotten her 12 rounds of chemo and her scans have shown little improvement, she has a long road ahead of her but she is so strong.
