08 November 2008
Saturday, 10:00 PM
This entry is being made by Mike Welch. I am David's older brother for those of you who don't know me.
After much personal agonizing about how David would want all of his friends and family kept advised of his condition and talking to my parent's about it, we have decided to post here where he made his daily journal entries, as we don't know that everyone would know to look at the messages.
I will be posting daily with my personal observations or with my parents' observations.
I accompanied David to Primo Fest last weekend. He had a great time with his friends, but was sleeping a lot and his verbal skills seemed to degenerate over the couple of days we were together. The journal entry that he dated Thursday, October 30th was actually posted Friday night in our hotel room. It took him a couple of hours to write that journal entry. It was a struggle to get him to take his medications and I could not get him to take them Saturday night.
In talking to my parents over the weekend, my Mom decided it was a good idea to be at his home when we arrived.
Here is my message from November 4th which fills in some more of the details:
Hello friends and family of David,
I know you are all concerned about David and the fact that he hasn't posted since Friday night. (His post dated Wednesday, October 29th was actually posted on Thursday the 30th, and his post dated Thursday the 30th was actually posted on Friday the 31st.)
First, please know that David is comfortable and in great spirits. That being said, however, he is not his normal self. When we got him home Sunday night, his apartment had a plumbing problem and had some flooding. Mom had met us there and we told David that he was going to have to go stay at her house. Normally, David would have been very concerned about his home and in particular his rugs and would have been resistant to leaving home to stay at Mom's. This was not the case and he has been at Mom's since. He would also normally be very concerned about posting his Daily Journals, but Mom says he has not mentioned them at all.
Mom has been in contact with his doctor and there was some talk of putting him on Decadron again, but since there have been no sudden changes, just gradual change, we are going to wait until after his MRI on Thursday so as not to affect the MRI with the steroids. We will know more on Friday and I will post more information as it becomes available.
Our entire family appreciates your concern and prayers and ask for you to continue to keep David in your prayers.
I have not seen David since then, but will be seeing him tomorrow.
The following is based on feedback from my parents.
David had his MRI on Thursday, and met with Dr. Fine at NIH on Friday at 10:00. Since his Sunday afternoon return from Lewiston, NY, where I traveled with him to attend the “Primo Fest” in his honor, David has been at our mother’s home in Annandale, VA. Alarmed at his condition when she saw him on Sunday, my mother called my father, and he immediately drove to her home to assist with David’s care. During this past week, David has declined steadily, speaking less, having more difficulty getting words out when he does try to speak, and sleeping more. However, he was determined to vote. My parents drove him to the polls, armed with the Virginia statute which would have allowed her to fill out his ballot, but David was able to complete his paper ballot without assistance, and was adamant that he required none.
David’s balance has become a little unsteady, and his gait has changed, so in light of these and other symptoms, it was no surprise when Dr. Fine said the MRI showed aggressive tumor progression. The scan was, in his words,
” terrible.” The tumor has crossed the midline, and is on both hemispheres of the brain, primarily in the frontal and temporal lobes, the corpus callosum and the corona radiata. The irony is that the other therapies he’s tried—Temodar, and Carboplatin with VP-16—have a much lower success rate than does Avastin. But statistics address results within a large group of people—for the individual, it either works or it doesn’t, and in David’s case, it just didn’t work.
On Monday, my parents had arranged for a hospice nurse to stop by for an informational meeting on Friday afternoon, but by Friday afternoon, it became clear that it was time to enroll. David, of course, had all of the appropriate paperwork prepared ahead of time, and the nurse commented on how well-organized he was. No surprise there!
David is at his best when he’s around people, and has visited with several old friends who have come by the house since Friday. David does better with pictures and music than with words, so lots of music and photos are being shared. However, he is barely able to write, and not able to post to his website. He has a hearty appetite, is not bedridden, and was quite improved in speech after his first round of Decadron, which he took last evening. Decadron is a steroid which reduces swelling, and the hope is that he will enjoy a good “window” of enhanced quality of life as the Decadron takes hold. He takes 4 mg twice daily, and if it works, we were told we should see steady improvement within a week. We didn’t expect to see any change after just 12 hours, but he did have a better day today.
Next week will bring meetings with the hospice nurse who will be his caseworker, the medical director, and a social worker. David is not upset to be away from his home, and he put his wishes in writing shortly after his initial diagnosis, almost four years ago. He wrote that he wanted to be cared for in the home of a family member, rather than in his own home, and that is what is happening.
David is still struggling to get his thoughts on paper, as that has been a daily discipline for him since he was 12 years old. Last night he wrote for about an hour, and laboriously printed, over and over, until the letters fell into place and these words emerged: “CONFRONT REALITY. CONFRONT END.” My Mom and Dad pray with David, and have started reading from the Book of Psalms before David goes to sleep at night. He is facing this stage of his brain tumor journey with the same courage and determination he’s shown from the beginning. And anyone who worries that David has lost his iron will hasn’t tried to get a pill down him when he doesn’t want to take it!
I will post more tomorrow after having seen David. Please keep him in your prayers.
