After 3 hours in the waiting room the nurse came in and told me they found a "bone lesion" in his lower spine and I needed to take my brother to the ER for an MRI. I called both my parents and informed them of the situation.
I rushed to the ER and from there they started to do blood tests, urine tests, and the MRI on Monday May 2, 2016. The MRI took more than two hours! My brother is claustrophobic and adding stress did not help. Although they gave him something to help with anxiety, he still could not stay still for more than an hour. He said he felt like he could not breathe and was being squeezed by the MRI machine and the noises that it made made it 10x worst .
After the MRI they confirmed he had "bone lesions" in his lower spine and the back of his skull seemed to have small spots. They did not know exactly what it was but they thought it was Langerhans cell histiocytosis (LCH). They performed a biopsy on his lower spine and confirmed it was not LCH. They told us we could take him home after 2 weeks hospitalized, but had to keep a back brace on at all times until they confirmed what exactly he had.
After a week at home we had an appointment with another doctor that specialized in cancer
He would tell us the results of my brother's biopsy at his clinic. Even though I saw the name of the clinic and children with no hair, it did not cross my mind or my mother's that it was a possibility my brother had cancer.May 20, 2016 was the hardest day for my family. It was the longest, most saddest day of our life.
The doctor not only gave us the horrible news, but also told us we had to start taking him to an adult cancer clinic because they did not specialize in multiple myeloma, due to this disease being found in older people and not children.
My brother is the youngest his new doctor has worked with. We have not found anyone close to my brother's age to relate to or to talk to.
He started treatment June 2, 2016.
