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7/13/2016 Latest post:
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most. On March 27, 2016 Tyson had said he had a bad headache and that he had them 4 to 6 times a dayear for 2 weeks. He was very pale but he wouldn't go to the er. The next morning he said it was still there. He went to school and I made him a appointment for 2 that afternoon. At 2:40 that afternoon i got a call from Dale saying they were sending him to either Fargo or the cities by ambulance because his blood and platelets were very low. So i left work and went to Graceville and we decided to send him to Fargo. When we got to Fargo they did blood work and a bunch of tests. When the results came back we found out that Tyson has a very rare blood disease called PNH and besides the PNH he also has Aplastic Anemia! On Tuesday March 29th they did a Bone Marrow Biopsy and put a Hickman Catheter in his chest. We went home from the hospital on April 1st. On April 12th they removed Tyson's tonsil's and adenoids. Tyson ended up getting srent to Fargo by ambulance for a very high fever (106.3) because of a bug he ended up getting which wouldn'twouldn't normally bother anyone with a regular Immune system. We had his first visit at the Cancer clinic in Fargo on Monday April 4th and he had his first Scoleris treatment which was once a week for the first 5 weeks and than every other week after that. We were referred to Rochester Mayo clinic. On May 2nd was his first appointment with the dr and on the 3rd of May he had his 2nd visit with the dr and he had confirmed that Tyson needed a Bone Marrow Transplant which is the only cure for the PNH! Another biopsy of his Bone Marrow was done on May 3rd at the Mayo clinic and than we went home after that. After weeks of waiting for a donor for Tyson, we got a call saying that as of right now there is no donor! :( Fargo checked his PNH level to see how high or low it is now and the one cone is 0.0 and the other cone is 0.1. His dr is confused and not sure why its low but is wondering if because of all the blood transfusions Tyson has had that it's low because its not his own blood anymore but dont have a answer as to that. Like they said the only Cure for PNH is a Bone Marrow Transplant, but since the PNH is low right now it'seems not as emergent. So now wait to see if a match comes up. Every Monday for weeks Tyson has had to have labs drawn in Graceville to see if he needed blood or platelets and every Thursday he has appointments in Fargo with his doctor for labs, shots and blood or platelets or both again. So 2 days a week we have been going to Fargo for either one or both transfusions! A few weeks ago Tyson was also diagnosed with ITP and we talked about trying ATG which is a horse serum treatment to hopefully cure his Aplastic Anemia. The original start date for the treatment was Monday July 11th but because of his compliment level in his blood it is to low, which is because the Scoleris knocked his compliment level down to zero. We have to wait til they are at 30 because of major risks if they would start the treatment before its back up. Tyson wont have a Immune System for awhile. It could take up to a year for it to build totally back up again. As of July 12th they were only at 18 so Monday July 18th they will redraw blood to be sent to Rochester to see how high it is. Hoping to start in a week or two. As far as visitors while he is in the hospital we all have to keep in mind that Tyson isnt going to have a Immune System for quite awhile so we need to protect him and keep his health in mind!!