CJ's Journey

Here goes... For those of you that don't know the whole story, I would like to share it with you. The day before Thanksgiving, our 9 month old baby, CJ developed a fever that we attributed to teething. 9 days later when the fever still had not gone away, CJ developed a rash on his belly, chest, back, and going up onto his neck and face a little. He also lost his voice (and was the CUTEST hoarse baby you can imagine, I promise). His doctor put him on a 5 day antibiotic. The rash cleared up, and he became a professional screamer once again. However, on day 6, we were getting ready to head to Akron Children's hospital for an appointment with gastroenterology for a condition CJ has called FPIES. As I was dressing him, I found a large mass on the left side of his neck. At his appointment, I asked them to check it out, and we were sent down to the ER for some bloodwork. There I was told my baby may have lymphoma. So many thoughts went through my head. As I stood swaying my fussy little boy, I felt my late aunt's presence SO strongly as if she was standing behind me with her hand on my shoulder. You see, my aunt lost her battle to cancer just weeks after CJ was born. CJ was admitted into the hospital after many tests, and they began treatment for left lymph adenopathy secondary to sinusitis (although he had no symptoms of sinusitis). After 4 days of IV antibiotics, the swelling went down, and we were discharged with oral antibiotics, vitamin D, and iron as CJ was also found to be severely anemic (secondary to FPIES). We were discharged on a Friday. By Monday evening, the swelling had worsened and was effecting his breathing. On Tuesday, he decided he no longer wanted to eat. Following the advice of some friends from work, and confirmed by CJ's doctor, we decided to get a second opinion at Rainbow Babies and Children's hospital in Cleveland. CJ was admitted for IV antibiotics as the infection had spread to the lymph nodes on the right side of his neck, under both arms, and in his groin. I cannot tell you how many times my poor son (now almost 10 months old) has been poked and prodded. Laying him down on his back is like torture. He thinks somebody is going to hurt him every time he sees gloves, a stethoscope, or a name badge. We are finishing day 4 of IV antibiotics, and his infection continues to worsen. He is getting more lethargic with the rosiest cheeks you can imagine. It's hard for him to hold himself up this evening. The pain I am experiencing as a mother seeing her baby go through this is truly a nightmare. I so desperately wish that one of the hundreds of tests they have run would come back positive so that we would at least know what we are dealing with. To have an infectious disease doctor stare at him frustratedly in silence then blurt out, "WHAT ARE WE MISSING?!" sends chills down my spine. He sees around 20 doctors a day at this nationally ranked hospital, and not one of them can tell me what's wrong with him. I try to stay positive, but my tears are painful. I fight them for so long that when they break free, they feel like fire ripping through a forest of trees in drought. How dare I not stay strong and positive for my family? Unfortunately, this is our story. I hope that some day soon, I can add an ending. For now, it will reman unwritten.

All money raised will go directly to the Lieb family to help with medical bills and hospital stay expenses.