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Jan 6, 2019
At age 4, Jacob was diagnosed with Common Variable Immunodeficiency (CVID), a primary immune disorder, and undergoes IVIG therapy every week to give him a temporary immune system. Jacob cannot produce the fighter cells necessary to keep him healthy and fight any illness or bacteria that enters his body. Even a cold can be troublesome for him as it can go into pneumonia. Pneumonia can do damage to his lungs and they can never be repaired. He lives with a continuous sinus infection. The doctors have said it will never clear up. He has had several sinus surgeries to clear out blockage, scarring and infection. Because of this immune disorder he is susceptible to other illnesses and health issues. November of 2012 he was diagnosed with Crohn's disease. In March 2014, he had a keratocystic odontogenic tumor in his jaw. It is a rare, highly aggressive tumor which can be benign or cancerous. Genetic testing was done at UCLA for Nevoid Basal Cell Carcinoma Syndrome and was found to be negative, thankfully. It is still a mystery how he developed such a tumor. He will need a CT of his jaw every year indefinitely as it will return. The doctors have said this type of tumor can show up anywhere in his body and he will need to be monitored closely. If more develop, more testing will be warranted.
Jacob takes numerous medications daily including 6MP (mercaptopurine), which is a chemotherapy drug. Besides the IVIG therapy every week, he also has Pamidronate infusions for bone loss (Osteoporosis). Jacob will require frequent testing, blood work and will require many trips to Omaha to follow up with his doctors. He currently sees Dr. Rodney Lusk, and Dr. Jon Vanderhoof both of Boys Town National Research Hospital, Omaha; Dr. Richard Lutz, Metabolic Bone Clinic at Children's Hospital; Dr. Adam Reinhardt, Rheumatology Dept at Children's Hospital, Omaha and Dr. Roger Kobayashi, an Immunologist and Professor at UCLA, from Omaha as well. Besides his Pediatrician, he also has an oral surgeon, an Immunologist and Pediatric Eye Surgeon in Lincoln. The reason for the eye surgeon is his eyes need routine checkups as the arthritis and Crohns disease can both do damage. Needless to say, he has a lot of appointments.
Having the immune disorder is a lifelong illness and serious challenge alone. Jacob's doctors have said his Crohn's will be difficult to treat due to the immune issues. Jacob is also being treated for lymphangiectasia, arthritis, osteoporosis, scoliosis and asthma.
Jacob spent most of his summer with several hospital visits/many tests and six weeks of physical therapy, 3x a week, for bilateral hip joint pain and to strengthen weakening leg muscles. This fall he did another seven weeks of physical therapy for bilateral hip joint pain, leg weakness and scoliosis.
Jacob is fortunate to have a big brother that he was able to share a Make A Wish trip with. Ryan is very supportive of him when it comes to his illnesses but they are typical brothers and have their share of fighting. They wouldn't be normal if they were good all the time.
Jacob loves pizza and pasta. His hobbies and interests are watching football, but is unable to play due to bad bones. He loves watching basketball and shooting hoops, reading, swimming, computers (or anything electronic), searching the web and architecture. Someday he wants to be an architectural engineer and has had some experience creating buildings on Google SketchUp.
Please pray for strength and comfort for all three of us as we take this long journey together. Attitude, personality and the loving support of family and friends matters greatly.