Archive: Updates 2003
- Update from Debbie; December 2, 2003
- Second Annual "For Pete's Sake" Result
- Update from Debbie; St. Louis Update- Sept 8, 2003
- Update from Debbie; Rehab Institute of St. Louis - July 23, 2003
- Update from Debbie; Trip to St. Louis - June 17, 2003
- Update from Debbie - May 23, 2003
- Update from Debbie - April 10, 2003
- URGENT News on Therapeutic Cloning Bills in Congress
- Running for Pete's Sake
- Christopher Reeve Paralysis Foundation: Action Alert!
- Sentencing Hearing Update
- January 30th Sentencing Hearing - Be There!
- Human Cloning / Stem Cell Research - January 15, 2003
- Thank You and Happy New Year - January 14, 2003
Update from Debbie; December 2, 2003
First the good news. Pete’s ERGYS 2 Bike will arrive today! We are rearranging the house trying to find room, it’s 7 feet long. I think the bike will look lovely in my living room! This is a milestone for Pete and we are very anxious to begin his therapy. He has been spending time on his Standing Frame, which is weight-bearing therapy to promote bone density, in preparation for the FES bike therapy. We will post some photos of Pete and his ERGYS bike on this website very soon.
Now the not-so-good news. Pete has developed kidney stones, which sometimes happens with quadriplegia. He is scheduled for surgery next Tuesday, December 9, to begin removal of a very large stone in his right kidney, the doctor thinks it may take several procedures. Then we will address the left kidney stones. All of this is making Pete very ill, but he is tough and will get through this. Thank you for your continued prayers, we hope this will be the last set back for a while so he can start riding his bike!
Now the best news. Dr. Sadowsky in St. Louis wants to use Pete in her clinical trial detailing the merits of the FES therapy which was recently funded by the Christopher Reeve Paralysis Foundation. This year-long trial will provide the clinical data we and other quadriplegic survivors need to fight the insurance companies for this type of life-changing rehabilitation. If Pete is well enough, we will travel to St. Louis in the next few weeks for the initial tests and lab work. Then, because of all of you and the “For Pete’s Sake” golf tournament and dinner, Pete can conduct his rehab here at home with the only FES bike in San Diego. We are so grateful; there aren’t words enough to thank you.
I will post another note after Pete’s surgery.
Thank you and God Bless You,
Debbie
2nd Annual Fore Pete's Sake Results
Keeping with tradition, this year’s annual “For Pete’s Sake” Golf Tournament was a huge success! With the help of 110 golfers, almost 300 dinner guests, more than 100 donations, and the many volunteers, $36,000 was raised for Pete. The Hawaiian Luau theme added a new flair to the tournament, uniting everyone with their flower attire. We had people from all over the country visiting solely for Pete’s sake, including personal friends and members of the electronics community. In addition, Pete’s grandfather, Dick, and his Uncle Dave and Aunt Dar returned for this year’s tournament (and his Uncle Dave did much better in this year’s round than last year’s). Pete’s grandmother, Jeanne, flew out from Florida to play with Dave this year. And we had a bunch of East Coast Flynn’s this year, including Pete’s Uncle Dick, Uncle Dave, and Uncle Jim to join Pete Sr. in 18 holes. Once again, a few of Pete’s closest friends caused numerous divots in the fairway, and the rest joined Pete for dinner at the country club. Overall, golfers and dinner guests agree: this year’s tournament was a blast, and next year’s will be even better!
Update from Debbie; St. Louis Update - September 8, 2003
Note from Carol Holeman:
To better understand the tremendous value of the FES bike, the following is
taken from the Washington University in St. Louis, School of Medicine
web site at http://www.spine.wustl.edu/abrp.html Functional Electrical Stimulation (FES): The brain uses electrical messages
to command muscles to move. When a spinal cord is injured, those messages
cannot travel from the brain to the rest of the body. That's where functional electrical stimulation comes in: A computer sends electrical messages to an individual's legs, similar to what the brain does normally. The muscles then contract and move under the computer's control. Functional electrical stimulation thereby enables paralyzed individuals to pedal a specially designed bike, for example. In the same way that uninjured people benefit from physical exercise like biking, exercise with functional electrical stimulation helps individuals with spinal cord injuries improve their overall strength and health. Research also suggests that simulating normal movements may encourage spinal cord cells that still are intact to "remember" what it's like to be involved in movements.
Our trip to St. Louis was a huge success, on many levels, and I can hardly wait to get started with our own Ergys FES Bike! Pete is a little less enthusiastic than
me (he calls me the drama queen) but he has high hopes for this therapy. Pete was outstanding on the bike - one day he rode for a whole hour after spending two hours in the swimming pool! Another day he rode the bike and went in the standing frame, and another day he rode the bike and spent some time on a Lite-Gait treadmill. We spoke with several guys who were riding the ERGYS bike and they all loved it - one man told us the bike saved his life. Quad patients in the St. Louis area just go to the Rehab Institute three times a week
to ride one of the six bikes right there in the gym. There is not a single FES bike in all of San Diego - Pete will have the first one. We saw four movies, went out to dinner twice and ate in our room the rest of the time. We watched
a lot of baseball and found Mars two nights and went to bed early. Pete engaged all of the many transport drivers in conversations challenging the
Cardinals and the Rams. And we both fell in love with Sakina, Pete's therapist. Mostly I just enjoyed spending time with Pete away from the distractions of work and home. Pete Sr. arrived Wednesday night to video tape two of the therapy sessions so we could duplicate everything at home. Pete counted down the days to get back to his pets, especially little Bull, his baby kitten. We had a great time and now look forward to beginning this important therapy right here at home. Next Monday our attorney, Bill Hays and I go before a Federal Judge and Blue Shield of California to "mediate" our first lawsuit. I'm hoping to have the second lawsuit filed by then. These lawsuits will help set a precedence in paving the way for those who come after us. It is our hope that never again should anyone in this situation have to go without what is fair and due. We will continue to push for everything Pete deserves, everything they all deserve. Thank you, my friends, for your wishes and prayers and support every day.
See you at the "For Pete's Sake" tournament - only two weeks away!
With love,
Debbie and Pete
Update from Debbie; Rehab Institute of St. Louis - July 23, 2003
We finally have our dates for St. Louis! Pete goes for FES training August 25 through August 29 with Dr. Sadowsky, and at that point we will decide which bike is best for him. I am so excited about this program and so hopeful; Pete is just apprehensive about the travel. We are working with American Airlines and have asked the Special Services Manager to upgrade Pete to first class just so he can recline a little more and hopefully be more comfortable. Because Blue Shield will not participate in the cost of the program, (an Independent Medical Review and lawsuit are pending) the Rehab Institute of St. Louis has agreed to see Pete as an outpatient which allows us to stay in a hotel instead of paying for a hospital room ourselves. I will have to arrange transportation every day and rent some equipment for the room, including a special mattress, but we will be fine and happy - I can't wait!
We celebrated the one year mark of Pete's injury on July 6th with a little bar-b-que for some of his friends - it was a hard weekend for him. I still thank God everyday for returning my boy to me that night, and I believe with all my heart we are on the right road with this therapy. Thank you for your continued prayers, and thanks especially to the "For Pete's Sake" volunteers - you brighten our lives every day - Love, Debbie
Update from Debbie; Trip to St. Louis - June 17, 2003
What an adventure - as always, I learned a lot, mostly the hard way. Pete and I both have always learned things the hard way, so we were somewhat prepared for this. I have several new ideas for books and lawsuits!
The important thing, our appointment with Dr. Sadowsky, went beautifully and answered all our hopes and prayers for this trip. She spent more than two hours with Pete evaluating his medical history, studying his films, describing the work they are conducting with their "Activity-based Program". The disclaimer came up immediately - they do not promise results nor take credit for Christopher Reeve's incredible progress. But her enthusiasm and passion for this program was unrestrained, and she very much believes Pete will benefit. We have two new prescription drugs, and Dr. Sadowsky will write letters of medical necessity for both the treatment training program and the FES bike. In her experience, insurance companies always pay for the treatment but only 5% of the time pay for the bike. We have decided to go forward, whatever it takes.
Pete's big question, at the end of the trip - "Can we take a train to St. Louis?" He was brave beyond words, not a complaint, but literally on the verge of a medical emergency the entire time flying, including the two hour delay on the tarmack. I don't think I'll get him on an airplane again anytime soon. We will get back to St. Louis whenever they call for Pete - by then he will be ready for another adventure! Thank you all for your prayers and support - forward to St. Louis, gateway to the future!
Love,
Debbie
Update from Debbie - May 23, 2003
Dear friends,
Pete has recovered from surgery and is back at Sharp Rehab three days a week. It's too soon to tell if the pain will resolve, but he already has more range of motion in his right shoulder - measurable improvement! The surgery was more difficult than he anticipated, but Pete remains positive and hopeful; his attitude is amazing. We have seen several specialists to address the"secondary" health issues involved and we all think Pete is doing very well at this point. New quads average 6 hospitalizations the first year, and Pete has only been hospitalized one time for five days since the initial stay, and two days for this recent surgery.
We fly to St. Louis June 5th and 6th to meet with the team of doctors who are treating Christopher Reeve with their Activity-based Therapy Program. If they accept Pete, he will return to St. Louis for a week of training. There is a chance they will not accept Pete into the program and we are okay with this - the search will continue. There is much research going on all over the world, and we are watching closely....
The lawsuit is filed against Blue Shield of California, it is 30 pages long, and we hope to get Pete to New Start very soon. This lawsuit, if successful, will set a precedent that will benefit survivors of spinal cord injuries all over California and elsewhere. Some of these battles are bigger, and more important, than us.
My next update will have some very exciting news about our new Foundation - stay tuned! Thank you for your notes and e-mails and prayers; you give us strength very day.
With love,
Debbie and Pete
Update from Debbie - April 10, 2003
Dear friends,
So many of you ask about Pete everyday, I can't believe it's been 9 months since his injury. We appreciate your thoughts and prayers and love more than words can say. April 3rd was Pete's 21st birthday and we celebrated with about 25 of his closest friends with a cook-out at home; his friends continue to surround him every single day. As a result, Pete is getting stronger and stronger - yesterday he was popping wheelies and doing donuts in his chair on our (sand) driveway. That chair goes 10 miles an hour! I just get out of his way!
We are still going to Sharp 3 days a week for out-patient rehab. Pete's nurse, Robert, takes him in our big, white wonder-van while I go to work, but sometimes I arrange my schedule to spend a little time with them at Sharp. His therapists, Nancy, Jane and Debbie and are absolutely wonderful - Nancy even baked brownies for his birthday! Pete works hard for them, and believe me, this therapy is very hard work. Pete's nurse has been provided through a Medi-Cal program that services children; unfortunately Pete lost that designation upon his 21st birthday. Robert has been a blessing to both Pete and me for the past 2 months, we are so grateful he came into our lives.
We are still battling for New Start and are ready to proceed with a lawsuit against my Insurance company. We have letters from both of Pete's Doctors, the Medical Director, the CA Department of Managed Health Care, The Center for Dispute Resolution in Sacramento and the Independent Medical Review Doctor - all recommending that Pete be referred for more therapy in an inpatient setting. Blue Shield denied the referral. I still believe in my heart we will eventually get Pete into this life-changing program at New Start....
Pete is scheduled for surgery April 23rd to remove the bone growth stimulator and the steel plate on the back cervical vertebrae - there is some indication that the plate was installed incorrectly and this may be the reason he has suffered so much pain since the second surgery in July. We hope and pray this will bring him relief and mobility in his neck and allow us to stop the pain medications completely.
And finally, some exciting news! I have been in contact with Doctor John McDonald, who's innovative activity-based therapy has contributed to the miraculous change in Christopher Reeve. Hopefully sometime this summer, Pete and I will travel to St. Louis for an evaluation to see if the doctors there think Pete would benefit form this therapy. This is a home-based program, 3 times a week, and we will only have to revisit St. Louis once or twice a year.
So I hope you all understand why these updates are so few and far between! I will try to do a better job keeping you informed! Pete and I both thank you all for you prayers and support - I would not have made it through these last 9 months without you, my friends -
I love you,
Debbie
URGENT News on Therapeutic Cloning Bills in Congress
Read the article and find out how you can help!
From the Christopher Reeve Paralysis Foundation / Hope Network.
The 25-mile Suzuki Rock 'n' Roll Marathon is scheduled for Sunday, June 1, 2003 in San Diego (www.rnrmarathon.com). Pete and Debbie Flynn are honored that Allan Abrams, their friend and FCI/CDC Western Regional Manager, is sponsoring Pete in this race. Allan began running 7 years ago when he sponsored a little girl with Leukemia in his first San Diego Rock 'n' Roll Marathon. With a PR (personal record) of 3h 28m, he has since completed 15+ Marathons, numerous 10K runs and ½ Marathons.
Thank You Allan!
Click here for your pledge raising flyer! (PDF - Requires free Adobe Acrobat Reader)
Christopher Reeve Paralysis Foundation: Action Alert!
Stop the assault on medical progress. Please click on the link below to make your voice heard (it's simple and free).
http://www.capwiz.com/reeve/issues/alert/?alertid=1461501
The U.S. House of representatives will meet soon to vote on a ban on all forms of cloning, including so-called therapeutic cloning, technically known as somatic cell nuclear transfer. This procedure does not create embryos, and does not involve creating new human life. It could, on the other hand, hold the key to medical breakthroughs for treatment of spinal cord injury and a host of other maladies and diseases.
CLICK ON THE LINK ABOVE TO SEND A FREE EMAIL TO YOUR CONGRESSPERSON!
This Bill Bans Potential Life Saving Treatments!
Urge Them to Vote Against H.R. 534 and Support Research by Supporting H.R. 801 (see below for details on H.R. 801)
The House of Representatives will be voting on Congressman Dave Weldon's (R-FL) legislation - The Human Cloning Prohibition Act of 2003 as early as February 25th.
Congressman Weldon's bill criminalizes the very biomedical research that may provide the best hope to finding cures for Alzheimer's disease, ALS, diabetes, various cancers, strokes, Parkinson's disease, traumatic brain injuries, and spinal cord injuries. We all agree, human reproductive cloning is unsafe and unethical; CRPF has repeatedly called on Congress to enact a
ban on human reproductive cloning, however a ban on therapeutic cloning would only dash the hopes of millions of Americans suffering from deadly and debilitating diseases.
H.R. 801, an alternative bill, has been introduced by Representatives Jim Greenwood (R-PA), Peter Deutsch (D-FL), Diana DeGette (D-CO), Anna Eshoo (D-CA), and Mark Kirk (R-IL), that would allow research using therapeutic cloning, while maintaining the same criminal penalties of Congressman Weldon's bill. Congressman Greenwood will try and offer this bill as a substitute during the House debate. Tell your Representative to vote NO on H.R. 534 and to instead support research and vote YES on H.R. 801.
For Talking Points, click on this link:
http://www.christopherreeve.org/hopenetwork/hopenetwork.cfm?ID=431
Ban Human Cloning, but Don't Ban Hope!
The sentencing hearing for the driver responsible for Pete's injuries was held on January 30, 2003 and lasted about 3 hours. The courtroom was full of friends and supporters of the Flynn's.
Debbie tells me, "My son is the most courageous person I have ever known."
Pete testified to the events of the night of his injuries, his recovery struggles and how this has impacted his life's dreams. He did this boldly and without shedding a tear. Debbie testified also on the impact this has had on her family's lives. And while she found it very difficult, she made it through her statement. I have read these statements, and the strength it took each of them to get through them is beyond my comprehension.
The defendant was sentenced to prison for 11 years and 4 months of a possible 12-year sentence. The law requires that he serve at least 85% of this time. The Judge recognized and commented on his lack of appropriate remorse, and Andre was remanded into custody at the end of the hearing.
Debbie writes to me on the night of the hearing:
"At our dinner table tonight my brother thanked God for the day, and asked for a healing for Pete and Kory: Physical, emotional and spiritual. He asked Our Lord to be with the driver's family and prayed that Andre would use this time to find comfort through Jesus Christ. Amen."
Amen.
Carol
MARK YOUR CALENDARS FOR THURSDAY, JANUARY 30
The sentencing hearing for the driver of the vehicle that so severely injured Pete Flynn is scheduled for 12:30 PM Thursday, January 30, 2003. Pete will have to testify and Debbie has been asked to provide a statement as to how the recklessness of this driver has impacted her family's lives and their futures.
There have been several hearings prior, but this is the final and most important. While Debbie and Pete have been unable to attend any previous hearings due to available time and medical complications, the driver has had supporters in the court room at each and it's expected that those efforts will be increased at this critical hearing.
Please be at this hearing to support Debbie and Pete. Pete and Debbie's legal counsel has encouraged them to invite all their friends to this hearing. (He also told them this will be the hardest day of their lives, so your prayers for them will be especially important.) Filling the court room with Pete Flynn friends and supporters can NO DOUBT have an impact on the judge's ruling.
What should we do? BE THERE!
Be there to support the Flynn family.
Thursday, January 30
12:30 p.m.
Superior Court, Vista
325 South Melrose
Vista, California 92083
Christopher Reeve Paralysis Foundation
We need you in Washington, DC.
On Wednesday, January 15, the Senate will introduce the Human Cloning Ban and Stem Cell Research Protection Act of 2003. This bill would criminalize reproductive cloning, which we all agree is unsafe and unethical (Human Cloning Ban). The other half of the bill allows somatic cell nuclear transfer (SCNT), also known as therapeutic cloning, which transplants a patient's own DNA into an unfertilized egg in order to grow stem cells that could cure devastating diseases.
If you are in the area, please come to the press conference in support of this bill, Wednesday, January 15, 12:00pm, Russell Caucus Room (325 Russell). Call 202-224-3121 for directions.
Therapeutic cloning has the potential to treat life-threatening diseases, including spinal cord injury, Parkinson’s disease, Alzheimer’s disease, ALS, heart disease, diabetes, and cancer. The bill ensures rigorous oversight of the research conducted, including review by an ethics board and protections for research participants, and imposes large financial penalties for violations.
This is a new science, and one that needs to be explored and discussed. Human cloning, however, should be banned immediately. Therapeutic cloning is a complicated issue, but one with too much at stake to ignore. This bill sees the difference, sees the implications, and sees the potential.
If you are unable to attend the press conference, please take a minute to write your Senators (a written letter can be found at the internet address below) and ask them to co-sponsor the Human Cloning Ban and Stem Cell Research Protection Act of 2003. Go to the Hope Network to contact Congress.
Ban human cloning, but don't ban hope.
