I know a lot of people aren't quite sure about what Make-a-Wish does. Make-a-Wish grants wishes to kids who have a life-threatening illness. The purpose of the wish is to give the kids something that they want to do, to be, to have, or to go a place they want to see. It gives the kids and their families something positive to focus on besides "the disease", and the results are life changing.
John's wish trip came at a point when we were all still reeling from his diagnosis of a life-threatening autoimmune disease and months of chemotherapy. We were scared and unsure about what his future held. Our lives were full of doctor's appointment, hospital visits, blood tests, surgeries, and the adjustment to living life with Wegener's Granulomatosis.
HIs wish was to go to Washington, D.C. He loves international politics and wants to study international relations. He also wanted to look at D.C. colleges. Quite simply, it was amazing week. In addition to looking at colleges, we had behind-the-scenes tours of museums, monuments, and the Capitol building. One of the highlights was when he got to stand behind the podium of the press room in the Capitol.
When a child is granted a wish, it's because he or she has a life-threatening disease. When that happens, the disease affects the whole family. For some families, that condition is something the child was born with and lives with every day. For other, it comes with no warning. From that moment on, life changes irrevocably. That's what happened to us.
In October 2011, John was a healthy, active 14-year-old. He was a top student, a member of the track team, and the captain of the 9th Grade Football Team at Albuquerque Academy. He was in peak physical condition.
A week after football season ended, John began complaining of mild joint pain. On November 9, the pain in John’s knees and feet was so intense he couldn’t get out of bed. His pediatrician ordered blood tests for joint disease. Two days later, the blood tests come back negative, but over the next week, John’s joint pain worsened. We asked for a referral to NM’s only Pediatric Rheumatologist. The earliest appointment was in January.
We were frantic. We knew something was seriously wrong because John was in so much pain. Another doctor's appointment revealed that he had a large amount of blood and protein in his kidneys, It was Thanksgiving week, but thanks to the intervention of a family friend, the rheumatologist stayed late one night to see John. During the appointment, John's condition rapidly deteriorated. He became so weak he couldn't walk, his eyes were red and swollen, and he was exhibiting neurological symptoms. The doctor said he had to be admitted to the hospital immediately.
That night, they took 12 vials of blood to begin 45 blood tests. Over the next two days, teams of doctors streamed in and out of the room, conducting their own exams. He had CT scans, MRIs, x-rays, blood tests, and ultrasounds. The specialists were stumped because none of John's symptoms fit together. Among other issues, he had a high fever, optic neuritis, ear infections, nosebleeds, “spots” on his lungs, blood and protein in his urine, and neurological deficits. They suspected he might have picked something up during our travels to Africa, Mexico, or Central America, and were researching tropical diseases.
Two days later, on Wednesday, November 23, a blood test had came back positive for high levels of ANCA. The diagnosis was Granulomatosis with Polyangitis (also known as Wegener's Granulomatosis, Weg/GPA).
The medical team began treatment immediately with prednisone and Cytoxan, a chemotherapy drug. Despite receiving treatment, John was in acute kidney failure. A kidney biopsy revealed that the disease had attacked 90% of John's glomeruli (filters) in John kidneys. They decided to use an extreme measure to save his life – plasmapheresis. During one treatment, John had an anaphylactic reaction to donor plasma. The quick actions of the doctors and nurses on the floor that day saved his life.
Fortunately, plasmapheresis worked in halting the deterioration of John’s kidneys. They began to improve. On December 9, after nearly 3 weeks, he was released from the hospital.
Within a few weeks, John was back in school. While he no longer takes monthly infusions of Cytoxan, he takes an oral chemotherapy drug and prednisone daily. His prognosis is good. This disease is not curable, but it is treatable. He continues to battle the disease with his strong will and positive attitude.
He's a senior this year, and is trying to decide which college he will go to. The D.C. colleges that he visited during his Make-a-Wish trip are among those at the top of his list.