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Thank you bunches for your donation and support for Bob and Debra. Your love and good wishes continue to be a source of encouragement for them. And your financial gift helps ease their fiscal worries during this extremely difficult time, too.
As we end this fundraiser, please continue to spread the word about ALS, and follow Bob and Debra on Facebook at ALS Bob, and via alsbob.com. (And should you ever need a fundraising site, I can tell you YouCaring is a good one and easy to use.)
On behalf of Bob and Debra:
THANK YOU, THANK YOU, THANK YOU!
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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,
WOW, it's September already, and that means we have just 13 days left in this fundraiser. Thanks to YOU, we are nearly at 15K, so $20,000 total is within our sights. Please continue to share this fundraiser on your website and twitter accounts and THANK YOU!Share This Update!
The good news is Bob is out of ICU, but still having trouble breathing on his own, so he remains in the hospital. His dog Samson (see pictures) is doing well after his bout with cancer, regaining weight and now going on walks and playing, so thank you for your good wishes for him, too! Deyan Audio continues to create stellar audiobooks day in and day out, and is geared up for the busy fall season, so keep the projects coming!
Encino-area folks should mark calendars for Sept 25, as Walk to Defeat ALS: Team Deyan has a fundraiser going on at the local Chili's. Eat up between 11 am - 11pm that day and present the Team Deyan flyer (see photos for the yellow flyer) and 15% of your bill will go to ALS! Team Deyan is also just a bit shy of meeting its goal for the October walk, with Kathe Mazur and Tara Sands neck-and-neck for top bragging rights. Check out all walkers at: http://webgw.alsa.org/site/TR/Walks/GoldenWest?fr_id=9196&pg=team&team_id=256659
It's truly amazing how many people have come together to support Bob and Debra in all these efforts. Your thoughts and prayers, donations, and spreading the word about ALS are all so meaningful to them. Let's keep it going and hit that $20,000 mark so we can help ease the financial stress they're facing. Thank you once again for everything you've done on their behalf - here's a *high-five* and "You are awesome!" from Bob and Debra!
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Bob's gastric bypass reversal surgery went well last week and we are confident that the reversal will give him the nutrition his body needs to fight ALS. Just as he was ready to go home from the hospital, Bob started breathing erratically. His doctors placed him in ICU with a strict no visitors/no calls and he is improving greatly. Please keep sending Bob & Debra email, Facebook and text wishes of strength. Debra reads each message to Bob and he is greatly strengthened by your love and support.
On the ALS fundraising & awareness side, I mentioned last week several other ALS efforts Bob's friends are doing, and omitted a cool one: Bob's friend Tom Horton paddled 26 miles from Catalina Island to Manhattan Pier to raise ALS awareness with Bob & Debra's Audies picture taped to his board! Tom is one of Bob's heroes; he's been paddling annually to raise awareness and funds for ALS research and when Bob heard of his efforts it inspired him to do the same.
All of you wonderful people have now raised over $12,000 just in this YouCaring fundraiser, and with just 20 days left I am *secretly* hoping we can hit $20K to round things off. So please keep spreading the word.
As always, a big squishy THANK YOU from Bob and Debra for all you are doing on their behalf.
Wow! It's been quite a week as your generous gifts and support have helped lift Bob's spirits and allowed us to surpass $10,000 raised! Thank you so much for both.Share This Update!
If you are following the "ALS BOB" Facebook page, you'll see a hospital picture where Bob's sporting a fancy hat following a successful reversal of gastric bypass. Such good news, and quite a look for Bob! The diaphragm pacemaker surgery is still to come, so do keep Bob and Debra in your thoughts.
It's great to see all the support and love Bob has: friends and associates are sharing and retweeting his documentary - you can see it on this page now, and it's a compelling video for lots more funding to defeat ALS, and a love story, too. Friends are also sharing his home page (ALSBOB.com) to spread the word about ALS, donating to ALS and ALSTDI, and 38 people have joined Bob's team in the LA Walk to Defeat ALS - raising nearly $5K so far. And some folks have donated to more than one these four efforts - so wonderful it's quite beyond words.
Through Bob's words and videos, I have learned a lot about ALS and its underfunding too. As I recently looked through You Caring fundraisers for others with ALS, I'm struck by how many people's lives are irrevocably changed by this disease. One person whose relative has ALS saw a Share a friend of Bob's made, and donated to Bob's fundraiser, knowing how difficult the fight is. That is quite a special gift.
So THANK YOU, THANK YOU, THANK YOU for all that you've done, and keep spreading the word about ALS, and this fundraiser - we have just 27 days to go on it!
Well the road is long and bumpy, but Bob keeps trekking on. There are some scary developments and some pretty cool new things going on for Bob recently. Share This Update!
Let's get the bad stuff over and done with first. Recently Bob has been finding his breath getting shallower and shallower. In response to this he's going in for an operation to install a diaphragm pacemaker to help keep his breathing strong. Also a gastric bypass surgery he had several years ago needs to be reversed in order to allow more nutrients to soak in from the food he eats. The surgeries are scheduled for this week, so please keep him in your prayers.
Now the thing is that if the surgeries go badly, the doctors think he may need a tracheotomy mid operation. As scary as that may seem, it actually leads us to some pretty cool new advances available for people with ALS. In preparation for the upcoming operations we've been recording Bob's voice in order to compile an in depth voice bank. Technology today will, in the event that Bob loses his ability to speak, allow him to speak through a computer that uses his own voice! As much as Bob wishes he could be Iron Man, he's happy he won't have to sound like Iron Man!
The kindness you have shown thus far has given bob a lot to go on. Everyday that someone new sends their love or support, it gives Bob hope and the strength to carry on. So from the bottom of our hearts, thank you.
We've only been live for 4 days and have already raised $2,000! THANK YOU to the first 2 dozen supporters for your quick action and generous gifts. I know many of you have posted Bob's fundraising link on Facebook and Twitter, but if you haven't I urge you to get the word out. We have just 6 weeks in this effort and want to make the most of it.Share This Update!
Here's the quick link:
Thanks again - I know Bob and Debra are delighted with this effort and response!