The Bowling Men

Well, it is becoming clear to me that not everyone knows exactly what's been going on with Jacob. So I want to try and explain it a little again.

He has an autoimmune disorder called Idiopathic Thrombocytopenia Purpura. It is a disease that causes your own body to attack your blood platelets. The platelets are what help your blood clot, and so if they get too low you are at risk for bleeding out from even a small cut and internal bleeding. The normal range is 140,000 to 440,000. When first diagnosed in the hospital Jacob's were at 7,000. If they had gone much lower he could have bled internally and died. They did many tests in the hospital including a bone marrow biopsy to test for leukemia and lymphoma. Luckily, those tests were negative. The disease ITP has no known cause. It's very frustrating to have this happen all of a sudden and have no idea why. Like many autoimmune disorders, ITP is treated with Corticosteroid drugs. Steroids supress your immune system so that your body isn't attcking as strongly anymore. This helps his body not to attack his platelets, but unfortunately, helps his body not to attack cold viruses and things either. Steroids can cause lots of problems if used in great amounts for too long. They cause weight gain, skin problems like acne, medicine induced diabetes, osteoporosis, and can ruin the inside of your stomach, to name a few. Jacob takes calcium and a drug called protonix to offset the osteoporosis and tearing up of the stomach. He stopped responding as well to the steroids alone, so he is also on another drug called Danazol. It works to supress the immune system also. He also has to have his sugars checked to watch for diabetes. His appetite is outrageous due to the meds, and he has gained 40 lbs. People on Steroids gain weight in their face and neck, and hands or feet rather than evenly throughout the body. He was responding well to the new medicine at first, but now he is up and down. His oncologist is trying to wait as long as possible, but the final step will be removing his spleen. Sometimes ITP can resolve itself, but also, he cannot be on the dosage of steroids he's on forever, so we can't wait forever for that to happen. Yesterday his platelet count was 127,000, up from 100,000 the Tuesday before. As of right now, there are no plans for a splenectomy, but I am sure it will have to happen eventually. He is doing fine, other than being hungry all the time, and breaking out like a 13 year old, you would never know anything was wrong with him. Unfortunatly, he will probably get sick very easily this winter, so we are praying for a healthy Jake.

On to an update for Simeon. He had his repeat CT Scan yesterday (which they moved to 7:30 in the morning!) We all got up bright and early and headed to Methodist. Simeon enjoyed pushing the elevator buttons as we went up and down trying to find where exactly we were supposed to be. He cried through the scan, I hate having to strap him down to the bed and listening to him scream. It breaks my heart. We met with his neurosurgeon at 10:30. He said that the spot looks exactly the same. He thought we should go ahead and remove it, since we still aren't 100% sure what it is. So my baby boy has surgery set for the 16th of November. I am really nervous about it, I do not want him to be put under, but I guess I just have to put my trust in God. We love his doctor, and trust him completely. I just wish Simeon had any idea what was going to happen. I can't explain anything to him, well if I do he wont really understand. But I guess maybe that is for the best, since he can't be a scared as me for two weeks.