Two years ago at age 5 my son Isaac, started showing symptoms that something was desperately wrong with him. He would spike a low grade fever of 101 and be in horrific pain. Scared for my child, like most parents, I would bring him to the Emergency Room seeking answers. Time after time we were turned away from the different Emergency Rooms. Doctors going as far as saying to me “there is no emergency here, go home”. A few times I was forced to stand my ground, I would refuse to leave until scans and blood work were performed. Each time being made to feel like I was crazier than the last time, because they never found anything. In my gut I knew something was wrong and I wasn’t going to settle no matter how crazy professionals made me feel. So after meeting with 5 different specialist and having many tests performed, one of the blood test came back positive for auto immune disease. It was a hard pill to swallow. My only son had a DISEASE, I was shattered. Little did I know, in 12 short months things would get worse.
In May of 2015, three specialist sat together and decided that Isaac had P-fapa (periodic fever syndrome). I say “decided” because you get the diagnoses for P-Fapa by ruling out every other option. June of 2015, Isaac had his tonsils taken out, in hopes to correct his auto immune disease. I was instructed to give it 6 months so his body could recalibrate. During that time my child’s pain amplified, the specialists slowly started to be at a loss for explanation. The specialist believed they no longer could help. I was back at square one. Left alone, helplessly trying to hold my baby who was consistently in pain without hurting him because his skin had become so sensitive. I was left to listen to his pain driven prayers begging God to make it stop. And then one night Isaac sat beside me with tears in his worried eyes and asked “Mommy, am I gonna die? Do I have cancer?” It was then I really began to see a change, My Isaac was no longer my Isaac. He no longer wanted to eat, no longer cared about playing and would often sit by himself at recess. There was no more laughter. Before long Even walking became unbearable for him, to the point at school he would rather wet himself in front of the whole class than walk to the bathroom. On many occasions needing front office staff or I to carry him around. Many would ask how you could allow this to happen. Where was the line drawn? I was reassured by many professionals that he had no life threating disease and at most it was probably Juvenile Rheumatoid arthritis because all the symptoms lined up. They say hindsight is 20/20, this statement could not be truer. Looking back the guilt, the shear pain I felt in my heart after finding out I had allowed this tortured to continue it is a pain I would wish on no man.
At the stroke of midnight on January 1, 2016 I carried my 7 year old into Cardon’s Children’s Hospital. They rushed us to the back, immediately started an IV and they performed blood work and x-rays on my baby. The blood work came back showing that his red blood count, that should have been at 12 was at 6. A unit of blood was immediately transfused. The x-rays showed a pleural effusion and complete white out on both sides of his lungs. Basically, His right lobe was almost completely filled with fluid and the x-ray should not have showed anything white but it did, a lot of it, on both sides. It wasn’t until multiple tests, blood transfusions, and a chest tube empting out almost 1000cc of fluid and finally a bone marrow biopsy that we got the answer to our prayers, we got a diagnoses. I felt silly and ashamed for thinking all those months back things couldn’t get worse. As the words of the MD’s washed over me like the endless waves of the ocean, I was beginning to understand the severity of the situation. Then she said the word that dropped on me like the weight of a ton of bricks. Isaac has cancer and the percentage of people that have this rare cancer was 1 in 200,000. All I could hear after that was the painfully haunting sound of my sons voice asking me, his mommy if he was gonna die, if he had cancer.
After completing a full body scans on my baby, they found that Isaac has bone lesions from head to toe, that he has the cancer in his lungs, his liver, and spleen. He has cancer in his bone marrow, he has three tumors on his spine and on the dura mater (the casing of his brain). He has Langerhans Cell Histiocytosis (LCH)
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