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In October of 2013, 3 year old Elora had an insignificant fall on the playground. Two days later, at 5 am on the morning of October 11th, she woke up screaming and stumbled out of bed. She collapsed in the hallway. We rushed her to the ER, where she was diagnosed with a UTI and constipation. We walked away thinking this was the answer. The next morning, Elora could no longer walk, and she was constantly crying about her back hurting. We thought it was due to the UTI, so we continued her on the course of meds, but the meds seemed not to be helping. We took her to the pediatrician, who checked her urine and assured us that the infection was gone. They could not give us an explanation for the back pain and sent us on our way. We then took her to a pediatric chiropractor; we were thinking maybe she popped something out of alignment. She was adjusted, but it did nothing. The chiropractor told us that she had never seen or heard of a 3 year old with back pain like this. We pulled her out of her dance class, which left her heartbroken. Her new normal was to wake up and be carried from her bed to the couch for the day, since she could not walk. We took her to the pediatric orthopedist, who told us that she had separated cartilage in her ribs. We thought we finally had an answer. He told us it would get better in a bit, but if it didn’t to bring her back. At this point, Elora was on round the clock Tylenol and ibuprofen.
A week later, we brought her back to the orthopedist. The new doctor ordered x-rays, which showed nothing. She then ordered an MRI which was scheduled for November 4th. The night of November 1st, Elora woke up from sleep in spasms. She was screaming in pain. As her parents we could do nothing to help our child, our child who could not stop her body from tensing. We rushed her back to the ER, where they diagnosed her again with a UTI, and this time did an ultrasound to check her kidneys. The scan showed normal function, but this explained nothing. This meant more antibiotics, more Tylenol and more ibuprofen.
On November 4th, she was prepped for her MRI, sedated and sent back. We waited for a long time. The nurse came back in and said to us, “Normally at this point we come in and tell you the discharge process.”
We reacted with, “Okay, so tell us. What do you mean normally?”
She told us that she couldn’t say that the doctor would call us. A few minutes later, the doctor did call us. She said a bunch of things, but what I, Elora’s mother remember the most was, “I’m sorry, but your daughter has cancer.” We aren’t sure what our reaction was, perhaps a lot of screaming and crying, maybe we blacked out. How could our baby have cancer? She told us that Elora had lesions in her spine.
She was brought back to us, still asleep. We were told to take her to the children’s hospital for further testing. Her IV was left in since they would need to do more blood work at the hospital. After she woke up and ate something, we rushed over to the hospital. Even though she had an IV port, the lab said they were not trained to use it. They stuck her again to draw blood for the labs. We had to get a nurse from the ER to come over to remove the IV port. The Aflac Cancer Center told us report to them in the morning.
The next morning we met with the Oncologist. We asked so many questions. Elora had a bone marrow aspiration from both hips and well as a bone biopsy from both hips, and more blood work. The oncologist wanted to admit her that day; we asked to take her home for one last normal night. We bought her the biggest cupcake you could imagine; we watched movies and ate popcorn. We cuddled all night.
The next morning we were back at the oncologist’s office. The results of the blood, and marrow were back. Her marrow showed new growth, but no evidence of cancer! Her blood work was off in many places; her SED rate was high, among other things looking wonky, but no evidence of cancer. The bone biopsy was going to take a while, but she didn’t have cancer. We rejoiced, but what were still left wondering what was wrong with Elora.
We met with Dr. Briones, a pediatric hematologist. They now thought that Elora had a disease called Langerhans’s Cell Histiocytosis. We thought that this must be it, every symptom seemed to fit. The treatment was still chemotherapy. At this point, Elora had developed lesions on her scalp, and pustules on her hands. Elora had more testing, more blood work. No one could tell us what was going on. Elora was scheduled for a whole body MRI in December of 2013, which unfortunately failed due to her coughing during sedation. A PET scan was scheduled for January 6th, 2014.
She was sedated again and this PET scan went very smoothly. The results came back normal. We were relieved and thought we were in the clear. Unfortunately, her blood work kept coming back way off. Her SED rate was always high, that meant that there was inflammation somewhere in her body. In March she had another small fall. Again, within days she couldn’t move, but this time it was her neck. She could not move her head at all. She was in so much pain. Then the pustules started on her feet and under one of her fingernails. We were going to see Dr. Briones every 6 weeks for a checkup and blood work, so we told him about it all. He was puzzled by it, and ordered another spinal MRI. On April 15th, Elora had her third MRI. She did wonderfully, and they got all of the images that they needed.
We didn’t hear back from a doctor for a while. We were told and we hoped that no news was good news. After 2 weeks with no word, we called them. When Dr. Briones finally got back to us we were told that Elora had a very rare disease called Chronic Recurrent Multifocal Osteomyelitis or CRMO.
CRMO is a one in a million disease; it affects girls 5:1 over boys. It’s mainly diagnosed in children, though sometimes adults can be seen with it. CRMO is an auto inflammatory disease; the cause has not been discovered yet. It can cause fevers, deep bone pain, psoriasis, pustules on the hands and feet, bone lesions that can be destructive, people affected by CRMO can also have uveitis and inflammatory bowel disease. CRMO is a diagnosis of exclusion. This is why they originally thought that Elora had so many other diseases first.
She is currently not having pain in her back, and her neck is slowly going back to normal. She is on two medications daily, and has physical therapy to help with strengthening her muscles to handle another flare up when it happens. She sees a pediatric rheumatologist and pediatric dermatologist every 6 weeks, and will also have MRI’s every 6 months. The lesions are still in her spine, as well as in her neck and hip bone too. Her SED rate is still high, and may always be.
We are unsure what the future holds for our daughter. We don’t know when the next flare up will strike. We all live day by day, and try our hardest to give our beautiful girl the best life that we can.