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It is really touching to log on quickly to see posts and see that someone posts a thread asking how we are doing. Thank you so much for caring.
I haven't been on much because it seems like life it going by so fast. I am the only one working and I was diagnosed with Whooping Cough. I'm feeling better now thankfully.
Eric is doing well. The confusion, extreme fatigue and hallucinations I think we all caused by the Kepra. He is no longer on Kepra and tomorrow we decrease his dose of Decadron to 2 mg a day for a week and then we stop it. He is a lot more alert. He can't be left alone because he gets very forgetful and sometimes confused, but I thank god every day that he is mentally back with me.
He had the Gamma Knife on 11/29. I called Sara Cannon Institute today to see if we can get back in to see if he can qualify for a BRAF trial. I'm waiting for them to call back. They have the expanded us of PLX4032 so I'm sure he can get into something there.
He's had one round of Temodar and starts another round on 12/29. He has significantly more tumors on his leg. You can see them grow daily, it's heartbreaking because then I worry that if it's not working in the leg is it working in the brain.
Hospice IS WONDERFUL! It's one of the best decisions we've ever made. Their help and guidance has been a huge relief.
Eric asked me to have one of my friends (who is a photographer) come take pictures of our family because he's concerned that he may not be here long and he wanted us to have pictures. I posted one of our pictures here. Thank you for all of the support you have given us.
Merry Christmas to you all and God Bless, Jill N Eric
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It is really touching to log on quickly to see posts and see that someone posts a thread asking how we are doing. Thank you so much for caring.
I haven't been on much because it seems like life it going by so fast. I am the only one working and I was diagnosed with Whooping Cough. I'm feeling better now thankfully.
Eric is doing well. The confusion, extreme fatigue and hallucinations I think we all caused by the Kepra. He is no longer on Kepra and tomorrow we decrease his dose of Decadron to 2 mg a day for a week and then we stop it. He is a lot more alert. He can't be left alone because he gets very forgetful and sometimes confused, but I thank god every day that he is mentally back with me.
He had the Gamma Knife on 11/29. I called Sara Cannon Institute today to see if we can get back in to see if he can qualify for a BRAF trial. I'm waiting for them to call back. They have the expanded us of PLX4032 so I'm sure he can get into something there.
He's had one round of Temodar and starts another round on 12/29. He has significantly more tumors on his leg. You can see them grow daily, it's heartbreaking because then I worry that if it's not working in the leg is it working in the brain.
Hospice IS WONDERFUL! It's one of the best decisions we've ever made. Their help and guidance has been a huge relief.
Eric asked me to have one of my friends (who is a photographer) come take pictures of our family because he's concerned that he may not be here long and he wanted us to have pictures. I posted one of our pictures here. Thank you for all of the support you have given us.
Merry Christmas to you all and God Bless, Jill N Eric
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