Posted on September 10, 2013
A message from Debra, as we enter the last few days of this fundraiser:
Bob was taken home by private ambulance late Friday night as a precaution with the intent that he would improve better at home; but rather than improving, he remains very ill. Bob must wear a continuous bi-pap to breathe. A human body can only struggle to breathe for so long, and the doctors at Keck Medical Center of USC have for several days recommended that he have a tracheostomy. We had hoped and continue to hope that Bob would get better, especially since the gastric bypass surgery reversal was so successful. With the bypass reversal, Bob will gain much more nutrition and he even had the slightest possibility of complete healing, if his ALS symptoms had really been caused by malnutrition instead of ALS.
Unfortunately now, even those of us who had even a flicker of hope that this cruel situation wasn't ALS have come to understand that ALS is what we are dealing with. And, with that realization the rapid degeneration of Bob's body continues. While at Keck hospital over the past couple of weeks, Bob lost complete use of his hands and arms. And, as you know, he had already lost his ability to use his legs and feet a couple of months back.
Bob's ALS doctors are at Cedars Sinai. So, we have been coordinating continued treatment with them. Bob has surgery scheduled at Cedars for Wednesday Sept. 17 to implant the Diaphragm Pacing as a solution to discontinue the continuous bi-pap. Should this not work (and unfortunately it is not expected to work), a tracheostomy will be performed during the surgery. As of that moment when the tracheostomy is performed, Bob will most likely not be able to speak any longer. Although there is a device known as a Passy-Muir valve that assists people who have had tracheostomies speak, most ALS patients do not have the muscles to make the valve work. So, although there is the slightest chance that Bob will be able to use this device to speak after the tracheostomy, the doctors and Cedars do not believe that he will speak again.
I think everyone who watched Bob tear up while receiving the Lifetime Achievement award at the Audies given by the Audio Publishers Association realizes two of the things in life that really matter to Bob. These are his ability to speak and the kindness and support of his peers.
When I told Bob yesterday the news of his doctor's surgical plan, it hit him very hard that his last form of communication will be his eyes and forever more his relationships will change because the way he communicates with others using his voice is an extension of his personality. Bob looked at me and said, "This is the saddest day of my life." If my heart wasn't broken already, at that moment I felt like it shattered.
If not for the continual support of the audiobook community, I think we would be adrift. Our own audio engineers have set up a round-the-clock vigil support of Bob first at his hospital bedside weeks ago and continue now at his bedside at home along with the 24-hour respiratory and nursing care I set up for him. Publishers have displayed amazing acts of kindness and friendship and have continued to trust our services even given our current situation. The Board of the APA has been so amazing and gracious. And, the President of the APA, Michele Cobb, came to visit us just yesterday. Traci Cothran set up a site through You Caring that brought in approximately $15,000 of donations to Bob's personal medical expenses; some of the donations were made by individuals that we have never even had the pleasure of meeting. Narrators joined the folks at SAG-AFTRA and come up with several ways to raise money to end ALS in Bob's honor. These and other actors have sent us thousands of prayers, FB posts, cards, e-cards, gifts and good wishes. Many signed up to "Walk with Bob" on October 20th. Bob's brother Alex is a doctor, and has been my absolute rock. Family, friends and neighbors continue to comfort us. Through social media, thousands of people from literally around the world have discovered Bob's story and have contacted Bob, written articles and blogged about him and shared his documentary with all they knew to continue to raise awareness of this terrible disease.
As Bob's wife, I want you to know how thankful we both are for you and all you have done. I want you to understand that if not for you, we would not have the will to fight on. Your presence in our life has strengthened and comforted us in the darkest hour we could have ever imagined. And, I hate to ask, especially given all that you have done so far…but there has never been a time when we needed your prayer and kindness more than now. Please pray that God would limit Bob's future suffering as much as He can. And please pray that I can survive watching Bob suffer.
And, for Bob, I ask that you please continue to share his life story (ALSBob.com) and continue to inspire all you know to raise money for patients like Bob in the future. Bob would like to be one of the very last people on earth to ever have the cruel disease known as ALS or Lou Gehrig's disease.
Thanks to all,