Thursday John Daniel had his scan and Lumbar Puncture. On the way home I received the call from his Oncologist but we did not get the news we had hoped for. He has nodules where his tumor had been removed, nodules on his frontal lobe or the sheath that protects his brain and a tumor at the base of his spine. This news is the reason why I havent posted since Wednesday evening. Our family needed time to absorb and figure out how to deal with this heartbreaking news. We really thought that his battle was wrapping up and all he had to do work harder at therapy once all the poison was out of his body to help him get stronger and be able to walk on his own. Now his battle is starting all over. John Daniel, his daddy and I will be going on Friday to see his doctors to discuss his treatment options. They are discussing an outpatient chemo treatment that he would receive for 5 days, Monday through Friday, once per month in St. Louis then 2 weeks later receive a one day treatment. He would receive this treatment for 12 months. Not sure what all this means for him but we are hoping and praying that he will be healed completely after this treatment and that it causes as little damage as possible to his little body. The doctor told me that they are 90 to 95% positive that is a recurrence of the Medullablastoma. The only way to be 100% positive would to be to remove and biopsy the nodules which could kill him and radiation is out of the question because it could do devastating damage or kill him too. Chemo is are option for now. On a happier note, he has been eating really good. Playing with his siblings and even went on an Easter Egg hunt with Jackson at mom and dads on Friday. Mawmaw and Aunt Glenda Greenwood took them to see Captain America in Dexter and then they went and played at McDonalds where John Daniel got all the way to the top all by himself. However, Aunt Glenda had to go up and help him down - God love her!! Yesterday afternoon he road all over mawmaws and the neighbors yard on Jacksons four wheeler. He seems to be feeling really good right now. We ask for continued prayers during this time as he will be preparing for yet another battle with this crappy disease. We havent told him and dont plan to tell him unless he asks. I just cant handle him thinking he could die. God knows my heart and that I hope that his will is for John Daniel to be disease free. I may never know what all of this about but I have to believe it isnt for nothing. Mom has told me that we may never know, even when we get to Heaven. I wont care what the reason is then because he will be disease free and running around without a care in the world with the rest of us. I am just hoping it could happen here too.
Posted on: Mon, 21 Apr 2014 03:02:08 +0000
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