Kam’s Journey

Kamren Jeffrey Cole ( Kam) is an amazingly strong and sweet little boy with a very complex medical history that has been deteriorating over the past several months. He was a 27 week preemie who developed NEC ( necrotizing enterocolitis) at 2 weeks of age and had most of his small intestines removed. He has a diagnosis of Short Bowel Syndrome and requires TPN ( total parenteral nutrition) intravenously for 22 hours a day. Because of his long term TPN dependence, he has been at risk for liver disease. He has had issues related to his short bowel syndrome for the majority of his life, ranging from intermittent line infections, chronic anemia ( which may be related to a number of factors) and anastomotical ulcers ( located along his surgical reconnection sites in his belly). About two years ago, he began having frequent illnesses (common colds with intermittent fevers) that occurred every 2-3 weeks. Along with that, his anemia gradually worsened, requiring blood transfusions around every 3 months ( which are now needed more frequently). Since May of 2022, he has had pneumonia several times, as well as issues with kidneys. He’s been life flighted to Childrens PICU twice since May 2022, with a stay May 2023 that required him being placed on life support for several days and at one point, we were told that he would likely not survive. With that hospitalization, it was discovered that he has Macrophage Activation Syndrome ( a somewhat rare disorder where the body’s immune system attacks itself when it should be fighting off viruses or infections). He is currently receiving Anakinra injections twice a day to help ward off any recurring MAS episodes. Since that diagnosis, he has been hospitalized four more times with possible MAS flare ups. It was also discovered that he has some type of chronic pulmonary disease ( they are thinking he may have hepatopulmonary syndrome, also rare, which can develop from liver disease and unfortunately, only worsens with time and there are no available treatments other than giving supplemental oxygen and eventually, possible liver transplant.) He recently had liver, kidney and bone marrow biopsies. Liver biopsy shows possibly stage 2-3 liver disease. Bone marrow biopsy confirmed anemic issues. His kidney biopsy shows glomerulosclerosis, which is scarring of kidneys. Damage is permanent and treatment consists of preventing further damage and kidney failure. Within the past 2 months, he has had three admissions for difficulty breathing, possible MAS flare ups and acute kidney injuries. He has a huge multidisciplinary team (GI, Rheumatology, Immunology, Pulmonology, Nephrology, Hematology and now, Cardiology) all trying to work together to figure out all the underlying causes for the frequent illnesses, hospitalizations and overall decline of health, especially within the past six months. Because of this, it has caused a huge financial strain. Each admission is atleast 5-10 day stays, which has drastically affected my ability to work or this point, even plan to work, because it seems when I finally am scheduled, we’re on the ambulance in route to Childrens. Because of the loss of work hours this past year, I even lost my own health insurance Dec 31st, which is just another knock to add to 2023 for me. These past three admissions have become more frequent ( Kam is home for a week before he’s sick again and eventually headed back to Special Care at Children’s). We have always kept pretty private and just dealt with the punches as they come. But at this point, we’re not sure which way we’re headed. I am a realist and know that the journey Kam is facing is likely not going to get any easier and will probably be long and tough for our family. He’s already starting home oxygen support and the thought is that it will likely worsen. He has literally battled for his life these past few months and with every admission, it seems we are taking yet another blow. Asking for donations just to help ease the financial burden of travel expenses, food, gas, etc. More so, Kam has been simply asking for prayers. From his lips, his words. He wants everyone to just pray for him. It’s so heartbreaking to hear him say those words and to wonder what is going through his mind. Please keep him, his siblings and our family lifted in prayers. #KamStrong