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Monday, May 3, 2004 10:09 AM CDT

Well, it's about TIME !!!!!

So, much has happened and is still happening in our lives.

March 27 was our first race of the season at Langley. We qualified great and was on the rear bumper of the lead car when the car lost power. At least we found out what the car is capable of doing. Even though the race was definitely an event, the best show in town was at New Life Center. On this night, many gathered together for a night of singing, praise and fellowship, in the name of Jesus, for our Tommy Toes. There is no question about it, God's love and healing grace was flowing through each and every one present. Thomas enjoyed himself immensely. He tapped his foot,swayed his body and even sang a little. The look in his eyes, the smile on his face and the color in his cheeks said it all. This night was, without a doubt, the best I've felt in a long time. I hunger for more.

On April 18, app. 230 motorcycles gathered at New Life Center to participate in the "Bikers Have a Heart 100 Mile Benefit Ride for a Life" ride. This came together through the tireless efforts of Ken Geigan, the drummer for the New Life music group. He not only convinced these groups to come together and ride, he also made sure, with a little help from his friends, the whole group was fed. I have never seen such a group of pan heads, flat heads, choppers, trikes, rice burners, bald heads, beards and leather with such soft hearts. What a beautiful bunch of people they are. Tommy was invited to ride on a Kawasaki 4 stroke 1500 owned by Paul Butler of the Southern Cruisers. Paul rode him around the parking lot a couple of times, gave the thumbs up sign and headed for the highway. I'm not sure Paul knew what he was getting in to with that one ride. When he asked was there anyone else in the group interested, the hands went up. Just one thing, Jeremy, you didn't have to cut in line to get your ride, you would have got your chance!! HA, HA! That motorcycle must have had some sort of rash 'cause Jeremy seems to have had an "itch" ever since he rode that day.

The following Thursday (4/22), we spent the afternoon at CHKD with Dr. Schneider and Kara. The visit was to increase the Carvedilol that Tommy takes and do an "echo" of his heart. Dr. Schneider likes to take a "look" at Toes' heart every couple of visits to see what's happening. He always reminds me that there will probably not be any significant signs or subtle changes shown in the "echo", but we need to look to be sure Tommy is not getting worse. We usually stay in the "quiet room" for about 3 hours so they can monitor Thomas' pressures every hour or so. After his vitals were taken for the second time, and Tommy's "echo" had been done, Dr. Schneider came to the door and just stood for a minute with a silly, almost sheepish grin on his face. I looked at him and said "What ?". I was sure he had heard a funny story or joke from one of his staff and was about to share it with us. He said " You know, I like to be cautiously optomistic but I got to tell you, Thomas' "echo" looked really great. Even Kara, the "echo" technician noted how well his heart was doing.It was beating stronger .... spunky " he said. " Praise God !!" Libby said. "I knew it was better" I found myself saying. We have seen the power of prayer. It is boggling to hear of prayers for Tommy from coast to coast, Florida to Canada. How has one so small, affected so many.

Thomas has been looking forward to coming out to Langley and seeing Geoff race. This past Saturday nite, he came over with his friend Mitchell and the rest of our family and friends, 16 in all. The rain held off and we enjoyed comfortable weather and another great night of racing. Geoff qualified 6th and redrew (started) 4th. It didn't take him long to move to 3rd and then 2nd. Geoff stayed with the leader, but cautions worked against us. We were also a tick loose which we'll rectify before the next event (5/8). Thomas was happy to see his brother racing for the lead because it was his advice that has helped us get to the front. Tommy kept telling Geoff, "All you need is a bigger motor". Smart and handsome too, what a combination.

Thank you each and everyone for all that you have done for our family. Thank you New Life for embracing us as your own and showering us with God's love.

All Our Love,

Libby and Doug


P.S. Geoff qualified 2nd and lead 29 laps at our race Saturday night(5/8). He finished 2nd and was dogging the leader up to the finish. Several members of New Life came out to cheer and support us. Thanks guys. I have attached a website with an article and pictures of the bikers "Ride For Life". When you get to the site, click on the picture of Rich (Naylor). Then, click on the headline (to the left) "This Was Quite an Experience" dated April 28th.

Monday, March 22, 2004 3:03 PM CST

Hello Everyone,

Hope all are doing well.

We have asked Make A Wish to help with a couple of things Thomas wants. Being the precious giving soul he is, he asked for two things only......no more pain and suffering and peace on earth. After a bit of coercing and coaxing he finally decided on something for himself. It is his wish to travel to a few places in this great country of ours. He doesn't want to fly cause he's scared of heights. He wants to travel by RV so he can rest / sleep when he wants, eat when he wants, watch DVDs and, well, have all the comforts of home. He has spent a lot of time looking at a state by state book of America he received from some special people in Smithfield. But first stop has to be The Z Store in Dallas, Texas. This is where Thomas orders all of the DragonBall, Dragon Ball GT, YU YU Hakisho, Yu Gi Oh and other Japanese anime figures and videos from. Other places that interest him are The Grand Canyon, Mount Rushmore, Yellowstone Park and dark camping spots where he can see shooting stars. God, we love him!!


A couple of things that are going on.....there will be a concert for Thomas' benefit at New Life Center on Indian River Road in Chesapeake on Saturday, March 27th at 6 pm. This has been put together by the hard work of Rob, Kerri, Roger and Rochelle as well as many other caring people at New Life Center. Thank you guys. We also want to thank Mr. Rob for caring enough to get the whole thing started.

Thomas has a new geneticist. Dr. Virginia Proud at CHKD has graciously accepted him as her patient. Dr. Proud has connections with a couple of studies on MELAS going on in San Diego and Gainsville. She is contacting them for help with the DCA protocol as well as update on any cardiomyopathy related treatments. We are excited about having her and her staff as a vital part of Thomas' team.


Dr. Schneider (cardiologist) has started Thomas on carvedilol the beta blocker that has proven so successful in adult studies. It will take app. 3 months before Thomas reaches maximum dosage. He has also agreed to contact CHOP (Children's Hospital of Philadelphia) to see if they would agree to review Thomas' transplant possibilities. This is not to say Columbia has made a wrong decision, it is purely to know that we have covered and done all we are capable of doing. Dr. Lamour did not completely close the door. It was decided that at this time it would not be in Thomas' best interest to perform a transplant. If it comes down to no other alternative, it will be reviewed at that time.


We are still emotionally racked with the magnitude of the impact of making these decisions. I know if we go to enough cardio doctors and visit enough heart centers we'll find one that is willing to take that chance and do a transplant. That doesn't make it a right decision. It is most difficult to find the right answers or feel at peace with any of this. I am sure and do know one thing....each and every day is a blessing. It has been given to us to hold on to and enjoy the ones we love, to seek out and make amends with those our hearts ache for and to give thanks for all we have, great or small. I wanted all things to enjoy life, instead I have life, to enjoy all things.


Daily we are overcome with the outpouring of support for Thomas. He seems to have touched so many. It still seems as thank you is not nearly enough to express how we feel. God Bless you all.


Libby, Doug and Family

Tuesday, March 2, 2004 9:20 PM CST

Hello Everyone,

Sorry for the lapse.

I got a call today from Dr. Schneider, Tommy's cardiologist at CHKD. He had just finished talking with Dr. Lamour from Columbia Hospital. They have concluded that Thomas would not be a good candidate for a heart transplant. He just has too many things going against him. As I've said before, the main concern in determining care for Thomas is quality of life. All specialists involved feel a pharmacological approach would be best.

The first approach will be to increase his doses of Enalapril, which is the blood pressure medicine. When the level the doctors want to reach has been attained, they will start Thomas on the Carvedilol. In adult studies, the Carvedilol has been used to enough of a success, that some have been taken off the transplant list. Pediatric studies are ongoing and at present are inconclusive at best.

I'll write more real soon. Right now I need to rest and digest the news of the day.

Let the healing begin.

God Bless you all.

Libby,Doug and Family

Wednesday, February 4, 2004 9:26 PM CST

Well, we have somewhat of a plan in place for Thomas. He is going to have a heart catherization done on Monday (02/09) at CHKD by Dr. Schneider and his staff. Thomas will be under anesthesia for the procedure. Even though the catherization should only take about 2 to 2 1/2 hours, recovery time could require an overnite stay due to the anesthesia and to be sure the entry point in the femoral artery closes properly. Readings taken from this procedure will be added to the data being evaluated in the decision concerning a transplant for Thomas.

With a little help from our friends, we've been able to get the nausea partially under control. Sheri Jett told us about Sea Bands worn on the wrist to help control motion/sea sickness. They're doing the job. Janice Rodgerson told Libby about the drug Zofran ODT that her daughter is taking for morning sickness. These are quick dissolving tablets that not only work, they don't wipe Tommy Toes out like phenergan, Dramamine or the other standards. Our only problem is the doctor prescribed 1 tablet 3 times a day and Sentara insurance will only pay for 9 tablets a month. Another battle to win !!

One of the brightest moments of our day is to sit down with Thomas and read the emails sent to him. His face glows and his smile lights up the room. His compassion for others shines well beyond his years. There is no question about it, the child is the father of the man.

Thanks for your prayers and emails. They mean so much to us all. We continue to pray for a miracle.

Libby and Doug and Family

Friday, January 23, 2004 9:31 PM CST

Hello Everyone

Just a quick note to let everyone know that as of today we still have not heard anything from the transplant team in New York. Dr. Pascual (neurologist) from Columbia Presbyterian sent us Thomas' file and evaluation from his exam. He said cardiology was still in talks and investigations. We would expect them to be very thorough before moving ahead. The wait is agonizing.

The good news of the day is it appears our supply of the investigative drug DCA (sodium dichloroacetate) will be replenished soon. It took a combination of four compassionate pharmacists to pull the strings. A very special thanks to Keith and Rick, and also our friends, Tom and Diane. It is most important for Thomas to get this particular medication because it keeps the lactic acid levels in his body in check. The normal level in most of us is from 0.7 to 2.0 mN. Thomas' has been as high as 11.0 nM ... 5 times the norm. This lactic acid attacks all major organs as well as causes debilitating headaches and stomach aches. The down side to the drug is it does cause mild to moderate neuropathy or nerve deadening.

Thomas had a very bad night last night. He woke up around 1:30 am feeling nauseous (as usual). Two seconds later he was vomiting .... covering his pajamas and the bed. That was bad but the worst seem to follow. Tommy sat on the bed and cried and apologized over and over for the mess he had made. My heart broke. I've got to say something and apologize for my brutal honesty...this disease sucks. In our hearts we honestly believe that our prayers will be answered, but right now this disease sucks. I ask anyone reading this to help with suggestions to help with Thomas' nausea. It is smell activated. He smells cheese pizza, he gets nauseous. He smells certain foods cooking, he gets nauseous. He gets a whiff of certain hand lotions or colognes, he gets nauseous. His PCP and nurse, who are female, liken it to the way they sometime felt during pregnancy. Because Thomas has lost some of his hearing and sight, his smelling senses have become more acute and sensitive. Any suggestions .... from old family cures to modern medicine .... would be appreciated.

Thank you once again from the bottom of our hearts for all your support. We have felt the power of your prayers and hope you will continue. God Bless.

Libby, Doug and Family

Friday, January 16, 2004 4:08 PM CST

Hello Everyone,

It was a great trip to New York. Seeing the sights, the buildings and landmarks was quite impressive. But I have to admit, the best view I had of New York, was in my rear view mirror. Single digit temps, below zero wind chills and 7" of snow did not a happy camper make.

The visit to Columbia Medical Center was very thorough. Thomas had extensive testing including echocardiagrams, EKG and X-Rays. We met with Prof. Juan Pascual,MD, who, with Dr. Darryl DeVivo, are world renown for their research on MELAS. They actively treat 158 cases from all over the world, in the neurological dept. of the hospital. Their research has been ongoing since 1984. He concluded that a lot of Thomas' current problems are directly related to the cardiomyopathy, not necessarily the MELAS. He also concluded that Thomas' MELAS should and/or would not keep him from getting a transplant.

Then came Wendy Chung, MD,PHD and her three assistants. Dr. Chung is an assistant professor of molecular genetics and another MELAS expert. She basically confirmed and reinforced what the neurologist had concurred.

The last meeting/exam we had was with Dr. Jaqueline Lamour and her assistant who work in the pediatric cardiac transplant program. After reviewing all the test results, interview info and records sent by Thomas'local specialists and consulting with Dr. Linda Addonizio, the director of the transplant program, it was determined that the best plan for Thomas, right now, was to try to treat him with a drug called CARVEDILOL. This drug is the first and only, as I understand it, beta blocker drug used on patients with congestive heart failure. It will not reverse the cardiomyopathy, but it has been known to stabilize the heart and allow it to pump slower and more efficiently. Their contention is quality of life. Transplants only happen as a last resort not as a fix all. We should know in a very short while (3-4 Weeks)if the meds will work or not. The meds and heart catherizations will be done by Dr. Schneider at CHKD and will be monitored by "our team" at Columbia Hospital.

Two things I can't say enough about. First is the intensity and degree of caring shown by the specialists and staff at Columbia. There is absolutely no doubt that their main concern and objective is improving Thomas' health and quality of life. There are dream teams in all professions and sports. We are truly fortunate to have the best of the best on Tommy's team at home and in New York.

Secondly, we are truly blessed for the outpouring of support for us. You have touched us so deeply we are at a loss for words. Thank you doesn't come close to expressing how we feel, but right now it's the best we can do. Thank you.

As soon as we have a schedule for Thomas' heart catherization and further test, we will post it.

Thank you for your continued prayers. God Bless.

Libby and Doug and Family

Tuesday, January 13, 2004 0:11 AM CST

What a day ! We finally got approval from our insurance around 9:30 this (01/12) morning. We've been scrambling all day to get ready. Now it's 1:00 am and I'm just about finished packing the truck. We plan on leaving around 9:00 am 01/13. It should take around 7 hours to get to the hotel in Englewood, NJ where we'll be staying. They run 8 shuttles a day straight to the hospital.

What a great day it has been. Mr. Rob (Tommy's current teacher) came by and spent time with Thomas on the computer looking at pictures of New York City. A great lesson in geography and weather patterns. He also had a visit from a special friend, Miss Amy. She brought Tommy a gift that he is sure will help ease some of his fears. But on top of the list .... Thomas was fitted with hearing aids today. It was like the world opened up and sang for him to hear. The birds, the dogs, the cars, the planes .... seeing the smile on his face was priceless .... for everything else there's MasterCard (sorry, I couldn't help it):)

Thanks again for all your prayers and support. There can be no question about the power of prayer. On the second night of Thomas' hospital stay (12/10) he had a very vivid dream. He saw Angels with swords fighting off the demons, and saw Jesus fighting satan himself. His comment was " the Angels can take care of demons, but it takes the power of God to take care of the devil". We knew that our prayers and the prayers of others across the nation were being answered.

We'll write as soon as we can. God Bless.

Libby and Doug and Family

Thursday, January 8, 2004 9:02 PM CST

We are preparing for our trip to the Childrens' Hospital at Columbia Presbyterian Hospital in New York City. We are leaving Tuesday, January 13th. Thomas is scheduled to be evaluated in the hospital's clinic on the 14th. Until that is done, we have no idea of our schedule. As soon as we know, we will post here on this site. God Bless and Thank You All.

Libby and Doug and Family

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