We have come to the place where we are going for quality over quantity.
Over the past week and a half, David has really declined. He no longer can support his weight enough to use the walker or even to stand for very long. Also, he has very little use of his right side, which corresponds to the side where the tumor is. His speech is also a lot worse...at times, he can barely talk over a whisper and it's a struggle to get even single syllable words out. However, this morning he is talking in longer phrases.
>At first, we and his doc thought it might be extreme fatigue caused by the Avastin infusion a week ago last Thursday (Mar 1). But now, as things keep deteriorating, he thinks it is tumor progression. Dr.C also increased his steroid dose up to 12 mg, which is suppose to help with brain swelling, but so far we have not seen an improvement.
>We have a transport chair to use in the house, to get him from the bed to the recliner to the table, etc. We also had a ramp installed for our front steps as he is dead weight, and both my and my husband's backs are feeling the strain.
>After David's last MRI on 2/26, we knew that things weren't going to get better (the biggest tumor had more that doubled in size in two months, and several others had increased as well.) But the doc had hope for the Avastin, that he could have at least six months or maybe more. In talking with his nurse today, Dr. C thinks it's time for Hospice. So, we have made the call and getting the paperwork started as we really need some help here. We have no family in the area and our daughter flew back to Wyoming last week.
We requested that Dr. C (his NO) remain involved with his care, especially anythig to do neurologically, and he agreed.
On one hand it seems we have given up, but on the other, no. Dr. C that if we wanted, and David feelsl up to it, David could still go for his second Avastin infusion this Thursday. And have another MRI. However, Dr. C's opinion is that nothing new will come out of it. I want to try for the another round of the Avastin. I'm glad he is remaining flexible and letting us decide on these matters.
>Other than a mild headache in the morning, which goes away with Tylenol, David is comfortable. No seizures. He spends his time in the recliner, playing his XBox. I am thankful that he still has enough fine motor with his left hand to use the controller.
>This disease teaches us to be grateful for the little things in life.
m/o of David, age 34
dx 1985, medulloblastoma
dx 4-13-11, AA3,
Feb 2012, progressed to AA4.