October 26, 2007: Our family’s life would change FOREVER.
It was around eight o’clock the evening of Oct. 22, 2007, when my family and I were finally sitting down to dinner after Jordan’s football practice. He had just showered and come to the dinner table without a shirt. I immediately noticed a lump on the side of his neck, which was half the size of a grapefruit and soft to the touch. As I reached out to touch it I said, “Oh my gosh, Jordan, what is that on your neck?” He shrugged his shoulders like it was no big deal and said, “I don’t know, it just showed up." My first thought was that he was having a problem with his thyroid.
As I began to take a closer look at my son, he looked like he had also lost weight. By now I was getting very concerned, so I asked him to go weigh himself. We discovered that he had lost around 10 pounds. My mind began to race as I started putting together a few facts from the past six weeks. I had taken him in to see his doctor because he was having a horrible outbreak of acne, at which time they prescribed an oral antibiotic and a topical cream. About three weeks into the acne treatment he started to complain that his stomach hurt and he began to lose his appetite, so I told him to stop taking the medicine. A few weeks prior to the acne appointment he was complaining that his back was hurting so he had a couple of chiropractic treatments and started sleeping in a different bed thinking it was his mattress causing his back ache. (Click here for signs & symptoms)
Needless to say, we never ate dinner that night. My husband, Jeff, along with our daughter, Breanna, Jordan, and I were quickly on our way to a local urgent care facility. The doctor performed a routine exam, asked some questions about how he was feeling, and then drew blood for further testing. He said the results would be in the following day and to make an appointment with his regular pediatrician for follow up. The next day couldn’t come fast enough. Trying to wait patiently I called the office three times, and finally on the third call the results were ready. The doctor said his blood work looked fine. Red and white counts were normal. I asked if there could be a problem with his thyroid because of the lump on his neck and his rapid weight loss. The doctor said that it could be a thyroid disorder and to make an appointment with his pediatrician, which I had already done. Before taking Jordan to that next visit he was to play in the middle school Super Bowl Tournament. With his love for his team and football, there was no way we could keep him from playing that game. Football was his life! He said he felt fine and thinking that we were dealing with a simple thyroid problem, we let him play. It was an amazing game. They won 48 to 0 and Jordan played his heart out! But 36 hours later we would find out that Jordan’s biggest opponent would no longer be on the football field — it would be with cancer.
The day after Jordan’s Super Bowl victory, we were off to visit his pediatrician who performed a routine exam. He ordered a CT scan (Computerized Tomography) for the very next day at St Mary’s Advanced Medicine Pavilion.
Not thinking it would be an issue, I told Jeff to go to work and I would take Jordan in for his scan. When we arrived Jordan had to drink a contrast dye in a juice mixture. He said it tasted awful, and then he was off to the scanning room. The CT scan didn’t take long. When it was finished, Jordan and I were asked to wait in one of the back rooms down the hall. I didn’t know it yet, but Jordan’s doctor had already been contacted and he was on his way to see us. We were asked to sit and were told that Jordan’s doctor would be there very shortly. He was Jordan’s regular pediatrician who had been seeing him since he was a baby. When he walked through the doors with the most alarming look on his face, I knew it wasn’t good news. He said, “We have a serious matter here and you need to call Jeff right away." I didn’t ask any questions, phoned Jeff, and told him to come right now. Waiting for Jeff to arrive, I looked at Jordan sitting in the chair next to me and tried to think of what could possibly be so wrong, but cancer was the last thing on my mind. Not my son. He is too healthy. I couldn’t wait for Jeff and asked the doctor what was so important that they had found on the CT scans. I couldn’t wait another second, I needed to know now.
I was not prepared for the doctors next words. “It’s stage IV Testicular Cancer. He has a lump on one of his testicles. It looks like it started there and has spread throughout his body. There are tumors in his abdomen and in his neck." I didn't know what to think or say.
Jeff arrived, and the four of us went to a private room where the doctor explained briefly what was happening to Jordan’s body. The loss of appetite, and his back pain was due to the growth of tumors that were spreading up through his midline and his neck. The doctor had already contacted Children’s Hospital in Denver, said they were expecting us, and that we needed to go home right away and pack enough things for the next couple of weeks.
We headed home, packed our bags, and with our daughter, Breanna, the four of us headed out for the 250-mile drive to Denver over the Rocky Mountain pass to Children’s Hospital where our battle with cancer would begin. Our four-hour drive was very quiet except for what was happening inside me. I was completely sobbing, but I couldn’t let my family see how frightened I really was. In fact, I did my best to conceal all of my fears for the next two years. “How could this be happening to my son!" I asked. There is no stronger love than the love for your child and no words to explain the deep pain I felt throughout my body, and most of all, my heart.
We reached Children’s Hospital later that night. Throughout that entire night there were a dozen or so doctors who came in and out of our room examining Jordan and asking him lots and lots of questions. Jeff and I realized that Jordan had been showing signs and symptoms for almost seven or eight months. The very first sign was the lump on one of his testicles, which Jordan didn’t think there was anything to worry about. There wasn’t any pain associated with the lump so he never discussed it with me or his dad. The next morning the tests began. Test after test, CT scans, more blood work, more questions, more fear.
His first surgery just a couple of days later, was to remove the diseased testicle and to place a Mediport catheter just below his right collar bone under the skin. The catheter would remain in place for months and months to come, because in addition to the blood draws, this is where he would be receiving his chemotherapy medicine along with many other medications.
After the surgery, more tests began. The doctors needed to know if any cancer had spread to other parts of his body besides the visible tumors on the CT scans. They performed an MRI to see if he had any brain tumors, and also a complete bone scan, which came back fine, thank God! They constructed a baseline to work from before starting any chemotherapy treatments since there are possible long-term side effects: lung and vision damage along with hearing loss are among the greatest concerns. So more tests were ordered for lung capacity, eye sight, and hearing. Already it seemed never ending, and this was only the beginning.
By January, Jordan had completed three cycles of chemotherapy. This was a clinical trial that Jeff and I had agreed to do. The clinical trial, in contrast to the regular protocol, involved more concentrated chemotherapy treatments. (http://clinicalconnection.com) In the clinical trial Jordan was to be re-evaluated more frequently to see how well the tumors were responding to chemotherapy by shrinking them and making them easier to surgically remove. Jordan’s oncologist said that he may not need any more chemotherapy after removing the remaining tumors. Then the tests began - again.
After one surgery and three cycles of chemotherapy, to our complete dismay, we heard the words, “The tumors are not responding to the chemotherapy, and they are growing and are very aggressive, surrounding his thoracic duct, and starting to distort and block his airway. The tumors in his abdominal and pelvic area are growing and spreading, enveloping all his major vascular structures, surrounding his kidneys and displacing the abdominal aorta into the mid abdomen." Dr. Steven Moulton, Professor of Surgery, also mentioned a tumor in his lungs, which due to my shock, I did not recall until several months later when the doctors noticed the tumors were multiplying and growing in size and it was time to operate, again.
Once again I thought to myself, “How could this be happening to my child!" Why did we not know anything about testicular cancer and that it is the number one cancer of young men from the ages of 15 to 40 (2008-09 statistics) and on the rise year after year? It was now consuming our lives in every possible way, emotionally, physically, and financially. How much more could we endure?
After the surgeon explained the complexity of Jordan’s diagnosis, he highly recommended we get a second opinion immediately. We knew the doctor was trying to tell us that we didn’t have much time to waste because Jordan’s tumors were taking over his body! He gave us two names of highly qualified hospitals in the country and said, “Go to the records office and pick up Jordan’s complete file and call them today."
As we headed down the long hallways of the hospital and I walked in front of Jeff and Jordan, I was completely sobbing under my breath. I thought that at any time, I may faint, but I told myself, “Don’t let Jordan see you upset, be strong for him no matter what!” I can’t imagine what was going through my son’s thoughts at that time.
Once back home, we were prepared to travel at a moment’s notice. We contacted MD Anderson Treatment Center in Houston, Texas, the number one cancer center in the nation. Jeff and I wholeheartedly thought for sure that they would be able to save Jordan’s life. The doctor said to overnight Jordan’s medical records to him and that they would review them as quickly as possible. Jeff had stressed to them the urgency in this case.
Those were the longest seven days of my life. The doctors at MD Anderson Treatment Center had reviewed all of Jordan’s records. Jeff’s conversation with the oncologist was that he could not do anything for the types of tumors Jordan had. Chemotherapy was no longer the answer to shrink them. Then Jeff spoke with the surgeon and she said, "Jordan is IN-OPERABLE because the tumors have spread through so much of his body. If we were to chance surgery Jordan could have a very poor quality of life."
After receiving the second opinion as in-operable, we sought a third opinion from Dr. Craig R. Nichols, Medical Director of Lymphoma and Testicular Cancer Research at Providence Cancer Center in Portland, Oregon. This was Lance Armstrong’s doctor.
We sent all Jordan's medical records to Dr. Nichols, and after reviewing them he was very optimistic about the treatment he could provide. This was very encouraging and gave us hope considering the diagnoses from MD Anderson Treatment Center. Dr. Nichols stated that the abdominal tumors in most cases are removable; however, it takes a surgeon of significant experience to complete the surgery successfully. There are three places in the country that do a sufficient volume of these cases with minimal complications, and Dr. Nichols was fortunate to have a superb young urologist that does more than anyone west of the Mississippi. The other two are: Dr. Rich Foster at Indiana University who does the February 14th, 2008 ICU after 12 hour life saving surgerymost in the world and Dr. Joel Sheinfeld at Memorial Sloan-Kettering Cancer Center in New York. After consulting with Dr. Steven Moulton, Professor of Surgery at the Children’s Hospital, University of Colorado, School of Medicine, and reviewing his credentials, we felt that Children’s Hospital was the right place for us to continue Jordan’s care. Only by the grace of God, Dr. Steven Moulton performed all seven of Jordan’s surgeries removing pounds and pounds of tumors with great success.
Our sincere thanks to Dr. Steven Moulton for saving Jordan's life!At age 13, Jordan Jones was diagnosed with aggressive form of testicular cancer. We unknowingly ignored all of the warning signs. (Click here for signs & symptoms) Left untreated, the cancer spread to his abdomen, neck, and lungs. His chances of survival were dim. His treatments lasted a period of 10 months. He received six cycles of chemotherapy and a total of seven surgeries to remove pounds and pounds of tumors throughout his body. Jordan’s medical expenses have exceeded over $1,000,000 to date.
Jordan is an inspiration to many and especially to our family.
Kim Jones, Founder of Testicular Cancer Awareness Foundation
June 30, 2015 Jordan was diagnosed with late recurrence, late stage testicular cancer once again. Cancer had spread to most of his liver, large abdominal mass, more than 100 tumors in his lungs, and a spot on the soft tissue of his spine and eventually moved to his brain. Jordan Jones passed away June 8, 2016 surrounded by his closest family and friends.