Modern Day Hercules

Brandy and I consider Cole a modern day Hercules because of all the trials he faced from the beginning of birth to the last weeks of his life. The battles he overcame are known throughout the medical cancer community and around the world which will hopefully keep people talking about him for many years to come. Here is a quick background on Cole and some of his trials.

Cole Regan was born early morning on October 22, 2002 at Lucile Packard Childrens Hospital. What appeared to be an amazing pregnancy soon brought them devastating news. An hour after Cole was born he started to grunt which concerned Doctors. Cole was then transferred over to the Special Care Unit where they kept a much closer eye on him. After many tests including two spinal taps Cole was treated for Sepsis, a blood infection. Starting the first day of Coles life he was put on a 10 day antibiotic treatment which of course was very traumatic; however they had no idea what was waiting for us just a short time later.

On December 20th Keith and Brandy called their pediatrician because Cole had two low grade fevers in one day. After some hesitation from the nurse, she finally decided to bring Cole in. Arriving no more than 20 minutes later the tests began. They went into the pediatricians office expecting to hear Cole had the flu, instead an hour later they were told Cole had cancer. This was to be the first day of the rest of their lives.

Cole was 7 weeks old when he was diagnosed with Acute Myeloid Leukemia AML M5 9/11 Chromosome. Starting on December 25, 2002 Cole was to start his first of five rounds of chemo. Coles type of Leukemia is considered an adult type which meant his cancer was very aggressive and his treatment would be even twice as aggressive. Being only 10 pounds, Coles chances of fighting these adult doses of chemo was low, not to mention doctors had no idea if they could even get the meds into his little body. The device in which they were to administer the chemo was, in theory, to big for his veins. Cole needed a Hickman inserted in his chest which would allow doctors to give meds and pull blood without all the needles. The problem was that there were no doctors that would perform the surgery, until one doctor stepped up and took control. After an hour an half surgery, Cole laid limp in the recovery room with a six inch IV tube hanging out of his 10 lb. body along with monitors hanging off from everywhere else. Through out the course of Coles life, he would receive 8 more of these Hickmans. Cole also received his first Blood and Platelet Transfusion that day.

After doctors informed his parents of Coles chances of survival; 10%, Cole had rounds one and two done with little complications and on February 22nd we were told Cole was in remission. Of course 3 more rounds of chemo had to follow, but the joy of hearing he was in remission was overwhelming. The family continued living in the hospital and Cole was receiving up to 10 different IV medicines a day along with numerous Blood and Platelet Transfusions. Knowing Cole was in remission was only half the battle. Soon more chemo came and months went by. At the end of June 2004 Cole was about to end his fifth round of chemo and the idea of going home for the first time in 5 months was closing in!

Unfortunately, in typical Cole fashion it was not meant to be. Seven days into Coles recovery from his 5th round, Cole become very ill with Fungal Pneumonia and early one morning with daddy by his side Cole stopped breathing. Coles lungs become filled with fluid and he was drowning. Within minutes of alarm, 15 Doctors from Pediatric Intensive Care rushed in. Keith was busy suctioning fluid from Coles lungs, trying to keep him alive when the Doctors came in. They immediately started CPR on Cole but his lungs would not inflate. Minutes later Cole was put on Life Support, and from there he spent 8 weeks allowing this machine to breathe for him. Cole was now diagnosed with Acute Respiratory Distress Syndrome ARDS. A healthy adult with ARDS has a 20% chance of survival; Cole had just completed his fifth round of chemo and was no where near considered healthy. His family was then told for the 2nd time to start to prepare for his passing. Cole had come so far, and to die this way was heartbreaking. There were many ups and downs while on Life Support but Cole pulled through and by the end of July Cole was breathing on his own and was transferred back into the cancer ward.

It was at this point that Keith and Brandy noticed Cole no longer had movement in his left leg. After having an MRI and CAT scan it showed that Cole now had 8 lesions in his brain and spine. It was thought to be Aspergilis (Fungal) and treatment for this was tough and most likely Cole would not survive. Once again Keith and Brandy were told Coles chances were slim and prepare for the worst. Compared to AML and ARDS, this was far worse and the treatment was not going to be kind. Cole would receive an anti-fungal medication that was the same toxicity as chemo and if not administered properly could kill him.

After just 8 weeks of this treatment Coles lesions were half the size they had started and Coles doctor said it was time to go home.

Cole slowly regained his movement back in his leg and he started to feel better. At the end of August Cole was finally released from Stanford. The family had lived there a solid 9 months straight.

Going home with him was a joy! They finally had their baby back. Along with Cole coming home, the family also had to have a nurse live with them 24 hours a day. Cole was a very complicated case which required 24 hour nursing supervision. The next few months were great, despite a few setbacks of having to go back to Stanford almost every other day for tests, and quite a few hospitalizations but Cole was home and they were a family.

For the next 10 months Keith and Brandy became VERY involved with TNT and LLS. They were asked to speak at meetings, be on radio and TV to help spread the word and Cole was the honoree for TNT which offered many people a spiritual lift off. Cole captured the heart of everyone he ever met and never disappointed the camera! He always knew when to smile and when to laugh; the ultimate ladies man. With a flick of his eyebrow and a sly smile, he melted the hearts of many women as well as men.

After 75 plus procedures that would put Cole under anesthesia, including MRIs, CAT Scans and bone marrow aspirates, 30 surgical procedures, dozens of blood and platelet transfusions, ARDS, Fungus in his brain and spine and of course his drug addiction to Fentinol, a derivative of morphine, caused by mucuositis; the rapid depletion of fast reproducing cells caused by chemo and the rapid development of those cells would cause the membranes to grow abnormally and rupture in his mouth, throat, and stomach; created a tremendous amount of pain for Cole. He was placed on pain meds for 7 months of his life. He had more pain meds in these 7 months then Brandy and Keith have had all their life!

In May of 2004, Brandy and Keith were told that Cole was suffering from hydrocephalous or water on the brain and required an Ommaya Reservoir which would allow the excess fluid to collect until the brain could properly flush the rest. Keith and Brandy soon discovered that Cole appeared to have relapsed with Central Nervous System relapse or CNS was the initial diagnosis. Cole received 5 more rounds of chemo in his port and soon after looked to be doing well. Weeks past and the port was not capable of doing the job; Coles head was filling with fluid which was incredibly painful for Cole. He was in so much pain that he slept 21 hours a day and the 3 hours he was up he cried.

A Neurosurgeon then put a shunt in Cole so that the fluid could pass into is body where the fluid would be absorbed and Cole would continue to live life like he always did, with a smile. Cole was doing well until one evening in the mid part of June while eating ice cream, Cole was far off and distant and had drool running down his face. It was the 1st of 3 strokes he would suffer. That next day Keith and Brandy took Cole the hospital for the last time.

The Drs. ran many tests and finally came to Keith and Brandy with the results. They brought them into a conference room where there was a table with 5 doctors and 2 nurses. It was then that they gently gave the horrible news. Our Cole was dying, and in their best guess, he had 2 -6 weeks to live. From the MRI it showed that a huge mass was growing into Coles brainstem and soon it would herniate into his brain stem and those would be his final moments. As for the mass, our Doctor told us they believed it was Cancer.

Keith and Brandy felt it was best to have Cole pass at Stanford Hospital considering 80% of his life was spent in the hospital. So once again the family moved back into the hospital, but this would be their final time.

During those final weeks of Coles life, Cole had over 350 different visitors! Many of them we didnt even know. Coles story had affected hundreds of people, and so many came to say goodbye. Coles story also ran on the radio which brought even more awareness out about his life and the urgency to find a cure for Leukemia.

The final weeks were tough for Keith and Brandy. Cole continued to fight up till the end. and although parts of his body were paralyzed from his strokes, he still gave his love to all.

The last time we ever heard a sound from him was when Brandy was telling some friends a joke about Keith. During the joke Cole started to giggle because he knew it was funny. A minute later Cole suffered his third and final stroke which put him into a peaceful coma. Cole was in a coma for three days.

On what was Coles final day, Coles breathing became very slow, and very long pauses between breaths. Brandy and Keith held Cole the entire day and never left his side. After 12 hours and Cole holding on we decided to sleep for a few hours since it was already 1 am.

Cole was hooked up to a monitor which would warn us that his breathing was lower then 2 breaths per minute. The alarms sounded and Keith and Brandy both woke up. Brandy went into the bathroom not knowing what was going on and Keith looked as his lifeless child and listened to him take his last breath. Brandy came walking out and Cole took one last breath for her and he was gone. They both believe it was Coles way of saying goodbye.

After 7 weeks of surviving 3 strokes, multiple seizures and partially paralyzed, Cole passed on July 28th, 2004 at 4:20am. Cole peacefully passed in his sleep with his parents next to his side.

Soon after Cole passed an autopsy was performed. Cole died of Aspergillis (Fungal) that invaded his brain. Cole was still in Remission! Aspergillis is a common side effect for people undergoing chemo. Since the immune system is knocked down, they have no way of fighting.

Our sweet Cole passed at 21 months of age. He fought a good fight and lived a very full and rich life filled with love. Coles memorial was held at the Marriot Hotel in Oakland where over 600 people were in attendance. It was a beautiful memorial filled with pictures, videos, stories and love.