When my 16 year old son, Cayden was 9 years old, he was having some health issues that resulted in some visits to a gastroenterology and intestinal specialist. After some testing to rule out allergies, Cayden was diagnosed with ulcerative colitis, an inflammatory bowel disease termed an idiopathic disease. This means that it develops without an apparent cause. Somehow the immunologic reaction a normal human body has against intestinal bacteria does not turn off in a person with ulcerative colitis, causing an inappropriate inflammatory response. The condition is treated by various medications designed to reduce the symptoms, sometimes causing the disease to go into remission. In some patients the disease does not respond to medication and removal or partial removal of the colon must be done surgically.
While Cayden and his four parents (mom, stepmom, step dad and I) and two brothers were finally beginning to adjust to his recent diagnosis and medication regimen, we were told that a spleen as large as Cayden’s may be an indication of a complication. An endoscopy (a procedure to look at his esophagus and stomach through a small camera) revealed the presence of esophageal varices, which are varicose veins in his esophagus. A liver biopsy confirmed our worst fears. Our son was one of the rare ulcerative colitis cases who had also developed a serious progressive liver disease.
Sometime before Cayden became a patient, the G.I. department at Mary Bridge Children’s Hospital had established a medical partnership with Lucile Packard Children’s Hospital at Stanford University. Being a research facility, LPCH was well established as a west coast center for liver transplants and therefore regularly sent a team of liver specialists to confer with patients. At Cayden’s first liver appointment, it was believed that within about 18 months he would need a liver transplant.
As time went on Cayden’s ulcerative colitis was not responding to the many treatment options being used. He had been hospitalized on several occasions all the while having an amazing attitude. Although he had to wear an abdominal shield to protect his spleen to play his favorite sport, baseball, and the repeated use of prednisone had stiffened his tendons and ligaments slowing him down and causing pain when he ran, Cayden had a remarkably strong spirit. In fact, during one hospitalization some medical students were doing rounds with his doctor. The doctor asked permission to allow the students to examine his “impressive” (hospital jargon for very large) spleen. When one of the young doctors began to apply pressure to his spleen with her fingers and hands, Cayden yelped out a loud, OWE! She jumped back and said, “Are you alright?” to which Cayden replied with a subtle grin and his face, “Just kidding”. Laughter exploded in the room and the young female medical student’s face turned bright red. Cayden was beginning to emerge as a hero in my eyes.
By age 12, Cayden’s colitis was still not responding to medication. His doctor suggested that the surgical removal of all or part of his colon was the only remaining option. He was also recommended a trip to visit Lucile Packard Children’s Hospital for a liver transplant evaluation. Seeing as though it had been three years since doctor’s had given him 18 months as a prognosis for liver failure coupled with a slight decline in liver function, a visit to the hospital was prudent.
Lucile Packard Children’s Hospital was an amazing place. We were treated with phenomenal care and respect. We were able to ask questions that were answered in such a manner that a layperson could understand. Among the many bits of information that was gathered, two important conclusions stood out. Cayden would begin taking an experimental medication. The antibiotic somehow seems to act to turn off the inappropriate inflammatory response that was causing his ulcerative colitis to flare up. Additionally, in other patients with similar conditions to Cayden’s, the medication also seemed to help slow the progression of his liver disease. Secondly, his liver was considered healthy enough to continue with his life at home until further notice.
Days turned into weeks, weeks into months and months into years. Cayden continued to take a pile of pills every day, visited his doctor at Mary Bridge Children’s Hospital every couple of months and met with the Lucile Packard liver team every six months when they helped their liver clinics at Mary Bridge. At one point about a year ago one of the liver clinic doctors form LPCH said that he no longer believed that a liver transplant for Cayden was imminent. “Cayden’s labs and appearance were near enough to normal”, he said, and “that he may be able to overcome the need for a transplant.” No one was more elated than my son and hero, Cayden.
On Monday, February 1st, I received a somewhat frantic call from Cayden’s mother. She said that Cayden had been rushed to the hospital and my wife and I met his mother and stepfather there. Lab work and other indicators suggested internal bleeding. Cayden was devastated. He was given several units of blood products to prepare for an endoscopy which revealed that some of his esophageal varices had indeed ruptured. During the procedure, the doctor placed bands on the varices to clot them off. Follow-up blood work indicated that he was continuing to bleed internally. Cayden absorbed a second setback with understandable disappointment but remained positive and hopeful. His doctor ordered a second endoscopy and found that because of the pressure caused by the inflammation around the portal vein in his liver, other varices had ruptured and had to be banded.
Following the procedure Cayden’s skillful doctor said, “I am confident that I have stabilized Cayden and he will not bleed anymore”. “However”, he continued, “I am recommending that Cayden visit Lucile Packard Children’s Hospital for further evaluation”. “When?", we asked. “Tomorrow” was his reply. Floored by his response, we all scrambled to make arrangements to head to Palo Alto. Cayden and I were transported by medical airlift while my wife, his mother and step dad made arrangements to fly commercially. Ironically, we all arrived at the hospital within about 30 minutes of one another and Cayden was admitted.
Over the course of the next two weeks at Lucile Packard Children’s Hospital Cayden’s doctors put in a shunt to decrease the pressure created by his congested liver, closed off the remainder of his varices and he was transplant listed.
While learning the many complex details about a liver transplant, the listing process and how livers are donated, we were presented with the concept of the living related donor. We were told that a healthy person with a complimentary blood type, similar liver size, and who has an emotional connection to the patient could donate one lobe of their healthy liver after which time the remaining liver portions in both the donor and the recipient would regenerate to full size within 6-10 weeks. There were obvious risks and possible side effects but choosing the living donor option would provide more control over timing of the transplant, the health of the donated liver and assure that Cayden’s health would not have to decline to an extreme level while he waited for a cadaver liver donation.
Since I knew that I shared the same blood type with him, I completed the first work up as a possible living related donor. I had heard the presentation and knew the risks but what father would not trade places with a sick or dying child, let alone provide part of his own body so his son might live a normal life? About half way through the process, I was rejected due to some health related issue that might result in a less than fully healthy liver.
The next person to complete the work up was my wife, Cayden’s stepmother. She breezed through the process and after she was cleared by our family physician with regard to a possible medical issue that would have precluded her candidacy, she was accepted as Cayden’s donor.
Suddenly I had two heroes. Even though it meant risking her life, being left with a very large abdominal scar, the possibility of moderate to severe chronic pain, and leaving her pride and joy second graders for two months, Amanda agreed to donate the right lobe of her liver. I overheard her on the phone explaining to one of her relatives that she had designated on her driver’s license that she wanted to donate her organs should she ever be in a fatal accident because she wanted to save lives if she could. “But”, she exclaimed, “How many people get to live see the results of saving someone else’s life”? “I’m in there with both feet”, she continued.
My two new heroes will be in operating rooms that are side by side in a little over a month from now. Their positive attitudes and unbridled bravery are awe inspiring. I am abundantly blessed to have them both in my life.
Submitted by Anonymous
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