So, what does it feel like to have a child diagnosed with cancer?

That was a question, I thought several years ago, that had an unimaginable answer. In 2003, our very active 4-year-old boy began limping, having some pain in his right leg and hip, was feverish, and acting lethargic and unwell. The pediatrician immediately suspected a bone infection, osteomyelitis, and had our son promptly admitted to our local hospital and referred to an orthopedic specialist. After 4 days in the hospital on IV antibiotics, we returned home with home health care and continued his IV antibiotics there. I literally was shaking after our return home, and commented to my husband, "how do the parents whose kids have cancer do it?" I knew a bone infection could be serious, but its treatment only lasts a month, then it was back to normal life. Or would it be?

Five months after our son's treatment for osteomyelitis, subsequent misdiagnoses, and requests for referrals to other doctors, Kevin's pain was becoming increasingly unbearable. We finally headed to Texas Children's Hospital in Houston to see a pediatric rheumatologist. At that point, the doctors believed Kevin had developed a rheumatic/rheumatoid condition. It was there where we finally learned that there was no infection, there was no rheumatic condition, but there was, in fact, a very large mass that literally engulfed and burst through Kevin's right pelvic bone. The radiologist and physician thought it could be a malignant tumor. What? Had we heard correctly? From reading about juvenile rheumatoid arthritis, we thought we'd be looking at long-term aspirin therapy. But, cancer? No, that couldn't be it. The pediatric rheumatologist was explaining to us that it was probably Ewing's Sarcoma, and that treatment usually involves some sort of amputation, but that you couldn't amputate a pelvis. What? She also was explaining that since it had been 5 ½ months, the cancer may have already spread across his abdominal wall and possibly into his lungs. What again?

The senses shut down. We were numb. Kevin had fallen asleep. David and I were lost in a fog. We had enough sense to ask the doctor whether we should stay in Houston for treatment. Would we be all right closer to home? Where should we go? What should we do?

The doctor answered those questions quite well. She said we should go back home and be with our other two children. There is a fine institution in Dallas, Children's Medical Center, affiliated with a major medical school, UT Southwestern Medical School – a necessity for childhood cancer treatment. Kevin needed to be treated by a multi-disciplinary team. The rheumatologist called Kevin's pediatrician while we were still in the office. She told the pediatrician what tests were necessary to confirm Kevin's diagnosis, and sent us on our way. She gave us her card, and sadly told us that she wished this were rheumatoid arthritis, because she'd be able to help us then. She told us to pray for an insidious infection, which was an unlikely alternate diagnosis. What again? Pray for an insidious infection?

The drive back to Dallas was another numbing experience. We needed to call the grandparents, but did not know what to tell them. It was all too much to comprehend. We couldn't comfortably talk about what lay ahead with Kevin sitting right behind us in his booster seat. We received a call from the pediatrician in Plano, who let us know that Kevin's MRI had been scheduled, then we would head straight to Children's for further testing. Our heads pounded. It was still too much to take in.

During the 24-hour period that had Kevin being sedated for an MRI, blood work, a CT scan, x-rays, and other testing, we had never met so many doctors. First, there was the orthopedic surgery group who said they wouldn't even touch this – they did not handle bone tumors. An orthopedic oncology surgeon would be best at performing the biopsy without disrupting the surrounding tissues. Next, was an infectious disease specialist. She came in and said she did not believe, at all, that this was an infection. Our hearts sank. Finally, the pediatric oncology group came in. They did think, most likely, that this was a malignant tumor. They believed that the tumor was "inoperable" and that Kevin would require a year of treatment – chemotherapy and radiation. A year of treatment, OK, then after that everything would be fine.

Sleep becomes a distant memory when you hear the words … "inoperable", "needs to be performed by an orthopedic oncology surgeon" … and these words are being uttered about your child. After the biopsy, we were told by the surgeon that this was a high-grade malignancy, but he didn't know what kind of cancer, yet. We would have to wait about a week for the pathology report to be completed. In the meantime, we were to sign more consents, allowing an oncologist to perform a bone marrow biopsy and allowing another surgeon to place a port-a-cath, a central line through which Kevin could receive his chemotherapy, blood transfusions, etc. More fog, more confusion, many tears flowing. It was obvious to the grandparents when we emerged from the consultation room what we had been told. Phone calls needed to be made; arrangements needed to be made. How could we tell our daughters, Michelle, a 12-year-old, and Laura, an 8-year-old, that their little brother had cancer? How could we tell anybody?

We told the girls, without hesitancy, that their brother had cancer. Michelle wept, and Laura sobbed. We asked one of the senior pediatric oncologists to help us explain all of this to both of the girls. She was wonderful and reassured the girls that they did nothing to cause their brother's cancer, nor would they "catch" cancer themselves. She asked if they fought with their brother. When they finally admitted "yes", she wanted to know if they would continue to fight with him, now that he has cancer. Laura responded with "Oh, no." Then the doctor said, "Oh yes, you will. You should continue to treat Kevin as you always have – after all, you don't want your little brother becoming a spoiled brat, do you?!" They laughed, we were relieved, and I will never forget that conversation.

This experience shakes you to the core. What I had always believed, what had been a rock in my life when things like jobs and relationships weren't going as well as I'd hoped, has been, "well, at least I have three healthy children." Those words no longer rang true.

After the biopsy, we accompanied our son on his stretcher down a hallway through a set of double doors, under a sign proclaiming, "The Center for Cancer and Blood Disorders." What was this surreal world we were now about to become a part of? How does this happen to a 5-year-old child? Why couldn't this have been one of us? What did we do to our little boy that made him so vulnerable? Was it something during pregnancy? Should I have taken those hormones to sustain my pregnancy with Kevin? Was Kevin exposed to something toxic or power lines or something else that caused this? WHY?

You soon learn that there are no easy answers to childhood cancer. Very strange things become routine. In that Center for Cancer and Blood Disorders, we saw bald children, constantly tethered to IV poles. Some looked radiant and happy, while others looked ill and miserable. Our son would become one of these children.

People have asked, "how do you stay so strong?" I don't. I do what I have to do each day to help our family get through this crisis. I could have curled up in a ball, lying in a corner, but how would that help Kevin? How would that help our girls? So, we went on, many times on automatic pilot, with adrenalin being the force that got us through.

After the type of cancer was confirmed, Ewing's Sarcoma, we met with the oncologist who specializes in bone tumors. He explained the course of treatment, the five chemotherapy drugs that would enter our son's system over a year's time. He would be admitted to the hospital for each round of chemotherapy. Also, quite often, he would be admitted in between rounds of chemo because of fever and low white blood cell counts and would require intravenous antibiotics to control potentially life-threatening infections. The "local control" treatment decision would have to be made – surgery or radiation – and neither were good options in Kevin's case. We were told of certain disability. We learned the potential side effects of the chemotherapy and the odds of Kevin becoming a victim to each one. Surely, Kevin won't have any of those side effects. What were we going to have to do to our child to give him a chance of surviving this cancer? What else could we do?

The year of treatment had its many ups and downs. It is truly a nasty roller coaster ride for which we never bought a ticket. The doctors, nurses and staff were wonderful throughout. I have no idea how they do what they do, but they are expert at explaining things, extremely compassionate, and very concerned about these children. I am still in awe of them – doing what they do, and somehow managing smiles on their faces, while children still lose their battles.

Guilt becomes a constant feeling. I'm spending so much time with Kevin, but so little time with the Michelle and Laura. My husband and I rarely see each other – one is at the hospital with Kevin and the other at home with our daughters. It has to be that way. There has to be some sense of normalcy and routine for the girls. They must go to school and continue with their activities, even though "normal life" has virtually halted for their younger sibling.

Some of all of this is a blessing. Hugs are so much sweeter, time with the children is so much more precious, and simple things become triumphs. Our son had major pelvic surgery in January, 2004, to remove the diseased bone, tumor, and surrounding tissue. He was to be non-weight bearing on his right leg for a period of 6 months, still going through chemotherapy. Walking once again was a HUGE triumph. The physical therapist was working with Kevin in the hallways of the oncology clinic. Staff members happily watched, and a few had tears in their eyes. At one point, it had been believed that Kevin may never walk again, but here he was — using crutches, tethered to his IV pole, and walking! It was glorious!

We also learned of the kindness and generosity of others. People, both familiar and unfamiliar to us, helped our family in innumerable ways. We had meals delivered to our home, our house was cleaned once a week, laundry was done, the dog was walked, and the lawn was mowed. Our girls were being cared for, on many occasions, by good friends and neighbors. We had others raising money for us to help with our ever-increasing medical expenses. We were honored and humbled by everyone's kindness. That was a beautiful blessing pushing past all the misery.

So, how does it feel? The emotions are raw and ever-changing. A milestone is passed and another hurdle lies ahead. Will we ever be comfortable again? Will we ever truly believe our son is cured?

Kevin has been cancer-free since his treatment ended in September, 2004. He has, however, been diagnosed with several of those "side effects" we thought would never happen to our son. Most are rare, some were not even mentioned at first, but all are a reality now. Kevin has many orthopedic challenges that lie ahead. His right pelvic bone is not growing, so there will be more surgery in his future. Kevin has intermittent pain, walks/runs with a limp, and has a hard time keeping up with his peers in simple activities, such as a game of tag. He has experienced partial, permanent hearing loss, and wears a hearing aid at school. Just weeks after Kevin's cancer treatment was completed, he was diagnosed with cardiomyopathy ("heart muscle disease") brought on by one of the chemotherapy drugs. He is followed by a cardiologist, takes heart medication, and may require a heart transplant at some point. The hurdles keep presenting themselves, but Kevin crosses them and goes on. He keeps us going. Thank God for that.

We are grateful, so grateful that our son is still with us. We are thankful for all the blessings bestowed upon us. We are hopeful that we will never hear the word "relapse." We are hopeful, too, that a cure will be found for childhood cancer … a real cure, with no strings attached, no potential long-term side effects, and nothing to worry about in the future.

V3N1 ESUN Copyright © 2006 Liddy Shriver Sarcoma Initiative.