Good Morning, Happy Thursday!! I know this Nik update has been a week long wait, my apologies, we werent ready. So, we went to clinic 1 week ago today. We received some crumby news that we werent prepared for. The lesions are much much worse. They have taken over the left lobe of Niks brain. They are now literally eating his brain and causing damage that wont reverse itself. He has now been diagnosed with Epilepsy. He is now on seizure medication. An EEG is scheduled for next week. He has to have a PET scan. If lesions show up anywhere else in his body, the diagnosis automatically goes to cancer. They are going to start treatment. Since we are still up in the air on diagnosis, it will not be chemo...for now. He will start an Immunosuppressant/steroid cocktail to try to reduce the lesions. Before any of this can be done, we have to have his sperm frozen. This treatment will kill off all sperm, making Children impossible. At this point, we are on a path where Biopsy will be the last resort for diagnosis. It is just too risky for Nik. The day before clinic was a horrific day. Nik had episodes from before 6am until 9:55pm when i sent him to bed. It was also the day of his first active seizure. Since starting the medication, he hasnt had any. I have learned that the most difficult words a Mother could hear from their Child are I dont want to die Mom. Heartbreaking! Nik is still on a backwards slide as far as age goes. At this time, he is very clingy, to me, His Mom. He is constantly and i mean constantly asking if we need anything, if we need a hand, can he help with anything, do we need help, etc.. He asks every couple minutes. I think he is just trying to grasp onto anything normal and helping is what our Family is all about. There is more testing to come, including a 3 Lumbar Puncture series. He is less than thrilled...as am I. At this time, that is all I can reveal. Please continue to pray for Nik and his Medical Team. We are heading into the unknown and prayer is our only Hope. We appreciate All of You. Have an amazing day Folks!
Posted on: Thu, 11 Dec 2014 15:22:03 +0000
Trending Topics
Recently Viewed Topics
© 2015