Devon LaPrade's Journal
Written Oct 25, 2012 8:26pmHello everyone, I know that it has been awhile. Alot has happened since the last time I had a chance to post. In August Devon started to decline in his progress. He no longer can do anything himself. He communicates with his eyes, we use a letter chart to figure out what he wants. He looks up when we get to the right letter, it is a long process. In the end of August we decided that the trial that Devon was participating in was no longer working. I was already looking into other options. I was going to enroll him in a trial in Texas to reirradiate him, and they offered to do the same protocol at Sloan Kettering. We ended up going to Sloan Kettering instead. They also combined the reirradiation with Avastin. We just completed the reirradiation about 2 1/2 weeks ago. We are going to continue the Avastin once every three weeks until something better comes along. Although Devon may not be able to do much he is still very determined to get better. He is willing to try anything at this point. His tutor for school started with him right after radiation was complete. He has a physical therapist coming to the house for now. I have been researching in the hopes of finding something new. Devon goes for his follow-up MRI on November 9th. It will be 18 months since he was diagnosed on that day as well. Thank to all for the love and support. BELIEVE!!
Written Jul 24, 2012 5:36pm
I apologize that it has been awhile since my last post. Alot has gone on since June. He had another MRI a couple weeks ago. It was not good and it was not bad. The tumor has changed, and it could be from the one medication or it could be the tumor growing. Right now they are considering him "stable". I am very concerned because he is showing signs of getting worse. It is very difficult to understand him now, he is choking all the time, and he can not get around without the assistance of at least two people. He was evaluated yesterday for speech therapy and will begin that at Sunnyview. They also said that they can help with the choking. He will be evaluated for PT and OT there next week . Hopefully these are some positive things that will help him get better. It has not been an easy road but I am glad that he is still here with us. We got to go to the beach last week for a couple days with some wonderful people. Devon went in the ocean and the pool (with assistance). He had a great time. We also went to a dinner show that was Pirate themed, he loved that as well. He just wants to get better and be a normal boy again. I will do everything that I can to try and make this happen for him. Thank you so much everyone for all of the love, support, and most importantly the prayers. We love you all. Michelle
Written Jun 17, 2012 8:06amThis week was difficult, Devon seems to be weaker in his legs. He feels the weakness means that he is getting worse and has been having several meltdowns throughout the day. It is very difficult to sit back and listen to him and not be able to fix the problem. I think that the weakness is a combination of them reducing the steroids and his left ankle turns in so he has to put more weight on his right leg , so his right leg has to work harder. The tumor is still there even though it may be shrinking and the symptoms will not be gone until the tumor has shrank alot or is gone. The steroids control the symptoms so I am hoping that this is nothing more than the reduction of the steroids that were kind of masking the symptoms. It just breaks my heart into a million pieces when he asks why is this happening to him , or he just wants to be normal, and play his video games, ride his bike , and walk on his own again. These are all things that he so desperately wants, that all of us take for granted. I have been very strong throughout this whole thing , but to sit here and watch my son so upset and scared, I feel so helpless almost as if I am failing him as a mom. I do believe that I have gone above and beyond to do my best to save his life, and I am very confident in all of the decisions that I have made. I just know that this is not going to be an easy road and Devon, myself, and my other children David, Gabriella , and Alexa feel like the weight of the world is on our shoulders. We are at the point now where it is very difficult for him to get around and it sometimes takes more than one of us to assist him. He asked me yesterday "Mommy please don't give up on me" I told him that I would never ever give up on him, my kids are my world. We continue to take life one day at a time and try to just enjoy every moment we can with each other. I am not going to lie it is not always easy and there are alot of different emotions going on in my house. I really can not thank everyone enough for always being here for us. We truly have the most amazing family, friends, community, support system that anyone could ask for and we love you all.