I remember saying, “God, it doesn’t get much better than this!” The Spice Of Life Co. was growing at an incredible rate, I had just landed three movie roles and my husband’s screenplays were in full force. I had (and still have) an incredible man in my life, a gorgeous little boy, my body was in great shape and the dogs were free from any problems. Then, within one week, our whole life began to change. It was September 15, 1996, when grandma Pat noticed Luke, our then 18 month-old son, was behaving strangely. He was begging for “baba’s,” drinking them all the way down, then almost immediately asking for another. He had an isatiable thirst and would pee like a horse. At times he would look distant and at other times act completely out of control.
My movies were overlapping. Some days I was only getting two hours of sleep, and I was really too tired to notice what was going on. In fact, when Gregory said he wanted to have Luke tested for diabetes, I thought he was losing it. “What, are you crazy? Nobody in our families has ever had diabetes,” I said. Gregory didn’t argue, he simply followed his instincts.
That Friday I had called to see how the visit with the doctor went. Gregory said, “Ok, I guess. The doctor said there was no need to test him for diabetes — that children with diabetes tend to lose weight, etc. He said that Luke was thriving and growing like a weed which was not a sign of diabetes. He said it’s probably the flu and that we should take the bottle away from him — that he was getting too old to drink from a bottle.”
Well, I wasn’t thrilled with the doctor’s advice, but I took away Luke’s bottle and began giving him his juice and soy milk in sipper cups. Luke went crazy, screaming for his bottle. He kept Gregory and I up, night after night. I finally called the doctor again who told me to hang in there and not to buy into his temper tantrums. I followed his advice, but subconsciously I didn’t agree with it. I guess I didn’t want to believe it, but deep down I sensed that there was more going on with my little boy than I cared to admit.
I knew something was really wrong when our housekeeper arrived on a Monday morning. She’s a religious mother who raised three children of her own. She walked in, took one look at Luke, his eyes dark and sunken-in from lack of sleep, and got down on her knees and began to pray. That did it! I was going back to the doctor to demand a blood test. However, he was on vacation, so I asked to see the doctor on call. I explained everything to him and asked him to test Luke. He said the lab was beyond busy and if I was willing to come back the next day, he would arrange for the test. At the top of my lungs I screamed, “No, now!!!” He turned ashen white and made immediate arrangements for the lab down the hall to take Luke’s urine and blood, after which I went home to wait for the results.
I barely got home when I witnessed a scene I’ll never forget. My beautiful little miracle, got up from the floor, his eyes rolled back in his head, he hit the kitchen cabinet doors, spun round and fell to his face. At the same time, the doctor who had gone home, called me screaming at me. “Get your kid to ICU immediately. His blood sugar is over 1100!” I said what should it be? “100. Go now, they’re waiting for you. He could die.”
Whether you’re a mom or not, you can understand the multitude of emotions I was experiencing at that moment. I emergency beeped Gregory, who by now was stuck on the 405 freeway, and grabbed Luke like he was a ragged doll. I actually wondered if I had time to fasten his seat belt. But knew I had to or he’d be thrown out of the car by the way I’d be driving. Thank God I’m a stunt driver. As I put on my flashers, rolled my windows down, and pulled infront of every red light yelling for free passage, I continued to slapped Luke’s face to keep him alert and not to go into a coma.
I made a 15 minute trip in 8 minutes and scretched into the emergency driveway, yanked him out of the car and ran into ICU. I threw Luke into the arms of the nurses who proceeded immediated to get a needle in his little arm and a eeg for brain waves and ekg for heart monorating. “What’s his name” they asked. I replied, “Luke Gregory Crosby” “Ok, Luke is a Juvenile Diabetic, Type 1” I was in shock. How I asked. We don’t have diabetes in our family. She asked me if he had experience a virus lately. I said yeah, about a month ago. “Well, that’s how we think these young kids are getting this disease. If they are born without a chromazone to protect them from this virus, then it attacks their pancreas and distroys the islet cells.”
How, could I know so much about nutrition, medicine, body atantomy, vitamins, minerals, amino acids, lab test, hormons, cancer, you name, but never did I study anything about diabetes. It just wasn’t something interesting to me. Finally Gregory reached the hospital to find me watching our child in a coma. We were devastated. We cried together, prayed together and began to blame each other for not doing what ever we could to somehow pervent this from happening. We were lost, confussed, scared and begged God to give this disease to us and not our inocent angel. Out of the conner of my eye I saw a priest come in to give last rights to a little girl who was dying. It was at that time I said, “Ok God, I can deal with diabetes. Give me the strenght and guidence and I’ll find a cure for this disease.” We both knew right then and there, we had no choice but to educate ourselves to the endth degree. We knew we had to learn more about this disease then even the teating doctors.
Thank God, we got an excellent doctor, Dr. Wesley Smith. We spent the next two months calling this man, at his request, every morning, noon, and night to give him Luke’s glucose report. Wesley knows that all parents are new to this way of life and wants to be there every step of the way to make sure we learn the right way.
God works in very strange ways and aftering praying for help, I received a call from my sister, Linda. She proceeded to tell me that conincidentally, the company she works for, funds Dr. Patrick Soon-Shiong at VivoRx, Santa Monica, a surgeon who developed the encapsulated pancreatic islet cell transplant technique that was performed on California recepients, Steven Craig and Clarissa Hooper. I immediately went to work on learning everything and anything about diabetes and Dr. Patrick Soon-Shiong.
First you must understand how the pancreas works and doesn’t work. Simply put, upon eating, your foods turn into sugar or otherwise know as glucose. Through a series of digestion, the glucose drips into the blood stream and a message is sent to your pancreas to secret insulin into the blood to convert the sugar into energy. The pancreas is a small, long, irregularly shaped gland lying behind the stomach, that secretes pancreatic juice into the duodenum and insulin, glucagon, and somatostatin into the bloodstream. Insulin is a polypeptide hormone secreted by the islets of Langerhans and functioning in the regulation of the metabolism of carbohydrates and fats, especially the conversion of glucose to glycogen, which lowers the blood glucose level. When these islet cells are destroyed and no longer produce insulin, the sugars will build up in the blood stream and cause excessive thirst, frequent urination, acidosis, and wasting. Diabetes is first recorded in English, in the form diabete, in a medical text written around 1425. In the 1800’s it was called ‘Children by the well’ disease because no matter how much water you drink, the only way to dilute the sugar in the blood stream is through conversion of glucose to glycogen and not throught drinking water. Children and adults would sit by the drinking wells and drink ’til they died.
For years researchers have brought within reach a long-sought therapy for diabetes: an artificial pancreas. Such a device would secrete insulin in precise relation to th the level of glucose in the blood, improving the management of the desease and the comfort of the patient. However, no one was able to make the therapy work in animals larger than rodents. It was Dr. Patrick Soon-Shiong, with the Wadsworth group, who on the cutting edge of this research, was able to have dogs going two years without additional transplants to maintain their glucose management.
The problem was not the transplantation, but preventing the new islest cells from being destroyed by the body’s own immune system. In the begining, the Wadsworth researchers protected their islets with a gel membrane that unfortunately stimulated inflammation during the first few weeks. It therefore had to be accompanied by low doses of cyclosporine, an immunosuppressive drug. Despite that requirement, the group was the first to win permission from the FDA to begin human trials in 20 human diabetics who have had kidney transplants and are already required to take cyclosporine. Even frequent home blood testing to finetune diet, exercise and dosages of insulin cannot fully normalize blood flucose. A strict regimen can prevent vascular damage, blindness, kidney failure and stroke. This disease is the third-largest cause of death in the U.S. after heart disease and cancer.
The solution to all these problems will likely be found in the development of a device or technique that both protects the islets from the immune system and allows the necessary exchange of nutrients and insulin. This feat is made possible by a “selectively permeable” material or coating. The ideal material or coating lets oxygen, glucose, hormones, and insulin pass, but blocks passage of larger molecules – especially antibodies and the T cells of the immune system, which would destroy the islets. This is a triger reaction in which the body’s automatic response to a foreign invader is one of covering it’s enemy by a fibrous coating, effectively closing it off from the body. In 1980, Anthony M. Sun, M.D., of Connaught Laboratories in Toronto, reported reversing diabetes in rats by using islets placed inside capsules made of alginate, a material derived from seaweed. This was the first use of microencapsulation in diabetes. Dr. Patick Soon-Shiong, M.D. continued with Dr. Sun’s work and attributes the success of his encapsulation thechnique to changes in the traditional formalation of the seaweed-based alginate material. “Fibrous overgrowth of the capsule has been the major problem with this technology,” Patrick said. “We identified impurities in the formulation that were reponsible for the reaction and devised a purified formula.”
May 1993, at St. Vincent Medical Center, Dr. Patrick Soon-Shiong began the first U.S. human trials of an artifical pancreas that he hoped would someday free diabetics from the need for insulin injections. Steven Craig was the first to be implanted with an artificial pancreas in the abdomen after he had been suffering with diabetes for more than 30 years and has been unable to work for the last seven of those years because of complications. His muscles were growing increasingly weak and painful and jumped at the chance to join a medical revolution in treating this disease. 38 year old Steven Craig, who now lives in Anaheim, CA, saw his type 1 diabetes dramatically reverse after he received a transplant of specially packaged insulin-producing cells that cleared glucose from his body. “Two years ago, I was ready for a wheelchair,”he says, “Now I walk five or six miles everyday.”
In Long Beach, Clarissa Hooper who was only 35 years old, was the second recepient of this ingenious treatment developed by Dr. Patrick Soon-Shiong in January 1994. As like Steven, Clarissa was plagued with complications from diabetes for over 22 years. “I don’t have those ups and downs anymore,” she says, and “my eyes are more stable, without the ‘blurry days,’ and I’m regaining the feeling in the bottom of my feet.” Clarissa has had multiple foot surgeries, and she notes that she’s healing faster afterwards now. Four years after becoming the first person with advanced diabetes to undergo an historic pancreatic islet cell transplant, Steven Craig continues to live with excellent blood sugar control and ongoing improvement of the nerve damage in his legs. The proceedure preformed in May and November of 1993 and again in January of 1996, found that some of the islet cells from the first two transplants are still functioning. “Based on these findings, we expect that patients will require a booster transplant every two or three years,” Dr. Patrick Soon-Shiong explained.
The pancreatic islet cell transplant is a minimally invasive procedure that consists of placing islet cells directly into a small incision in the abdominal cavity. There they produce the steady amount of insulin needed to reduce or eliminate the need for injected insulin and reduce or reverse diabetic complications such as nerve degeneration and impaired eyesight. The transplant procedure is limited by a shortage of human donor pancreases. “Our early lab findings suggest it may be possible to clone human islet cells in the lab, so that there can be an unlimited supply,” Dr. Soon-Shiong said.
Gregory, Luke and I were very fortunate to take an audience with Dr. Patrick Soon-Shiong. We were not only impressed with his work, but his genune kindness and love for the patients he works with and his future possible recepients. He keeps a photo album of all the children with diabetes who have sent him cards and letters of wishing him luck with his studies. For they know they will reap the harvest of this man’s work. Dr. Soon-Shiong informed us as to the patients he works with now are virtually in need of finacial help in order for them to go through the proceedure and clinical studies. A foundation has been established to help support these patients while they are paving the way for children like my little Luke. I urge anyone with the desire to donate to a chairty, to send a check to the VivoRx Foundation, ADDRESS, or call PHONE NUMBER for additional information.
Well, Luke is now 33 months old and is a food combining vegan. He eats no sugar, dairy, animals or chemicals. 3 days a week he runs 1 1/2 miles at the park with me and goes to the gym to do treadmill, pull ups, dips, tricep push downs and leg press. All with little or no weight. When we come home, if the weather permits, he’s in the pool for about 40 minutes. These are his choices. He is a born jock! His blood is tested every 1 1/2 to 2 hours and is injected every 3 hours. We are keeping very tight control on his sugar and he is just now learning how to turn on his own glucose monitor and tell us where he wants his shot. Luke now needs to learn to take his power back by making heatlhy decisions as best as a near 3 year old can make. But we feel if we teach him all these good habits while his still very young, the rebellous years won’t be so bad. One thing we know, he’s happy, growing, and an extremely loving children who is going to grow up with a little inconvinence until Dr. Patrick Soon-Shiong says it’s our turn.
UPDATE:
I received an e-mail from a woman who informed us about Clarissa Hopper.
It read: Just to update you on the second transplant receiver Clarissa Hooper. She told me that this procedure was not effective for her. She subsequently had both legs amputated, and a kidney transplant. She passed away in Livingston, Montana at the age of 47 on January 16, 2006 from heart failure.
Our hearts go out to her family and loved ones and know that she is traveling in the light without all that pain. The real treatment for diabetes is just around the corner and we’re so sorry that Clarissa will not be here to see that day!
UPDATE:
Steven Craig died at the age of 43. Mr. Craig took his own life. After the experimental transplant, Steven had an amazing turnaround in his health. He no longer needed insulin injections, the constant leg and foot pain had disappeared, he was able to walk again, his nerve function improved and a foot ulcer healed in only seven days. In addition, he was able to have a full-time job for the first time in 10 years. He had increased energy and a general feeling of improved health. Steven received two more booster transplants, the last one in 1996. Steven’s isel cells were failing him after a while but he was told by Dr. Soon-Shiong that he was not eligible for any more islets. Once the funding is shut off, the patients go back to where they started. How horrible and scarry this thought is.
Steven Craig is now in the light and enjoying a life without pain.