A Blue Springs teenager was named one of Missouri’s top youth volunteer for 2011. Jacob Mozer, 14, sets up a lemonade stand every year to raise money for cancer research. Mozer will receive a $1,000 engraved silver medallion, and an all-expense-paid trip in May to Washington. Ten honorees from all 50 states will be named America’s top youth volunteers at that time. Click to hear KMZU’s Chelsea Wade talk with Mozer:
How to get involved:
To volunteer, be a corporate sponsor/donor for the Hy-Vee Kansas City Lemonade stands in June, or to hold your own office (eg denim days or lemonade stand) or school event any time of the year, please email us at [email protected]
Continue to help fight children’s cancer! Make a Donation Now! Just click below to go to the secure donation site. http://www.alexslemonade.org/kclemonade
Jacob’s Story by Dr. Mark Mozer
May 12, 1998, was the day my family’s life changed forever. Our 16-month-old son was diagnosed with stage IV neuroblastoma, a rare childhood cancer (about 550 US cases per year) with a 60 percent fatality rate. I am a pediatrician and my wife Cheryl is a pharmacist, both used to helping ill people, but in this instance we felt totally inadequate.
For three months, Jacob had symptoms that we now realize were related to the tumor. He occasionally vomited for no apparent reason and had low-grade fevers. He was also very fussy, which we attributed to teething pain. Then one night, while giving him his bath, we noticed large protruding blood vessels and spider veins on his abdomen. The differential diagnosis of hepatomegaly was spinning through my head. A CT scan done soon afterward confirmed our worst nightmare.
The oncologist told us that we were in for a long, difficult year, during which our sweet, blond-haired toddler would have to undergo chemotherapy, a stem-cell transplant, major surgery, radiation, and monoclonal antibody therapy. It was Jacob’s only chance, the oncologist said. When a nurse asked if we needed anything, Cheryl replied, “Yes, a different diagnosis.” We cried the entire day; many more tear-filled days followed.
The rapidly growing tumor – which had begun in the adrenal gland and metastasized to the liver and bone marrow – had wrapped itself around the superior mesenteric axis, compressing the vena cava and aorta and forcing the development of a large collateral circulation. The tumor was so large, it crossed the midline and caused the the umbilicus to protrude. Hard as it was for us to believe now, Jacob had just had a normal 15-month well-child check-up.
Taking care of Jacob
Chemotherapy began three days after diagnosis. Initially, overwhelmed with guilt, shock, and grief, Cheryl and I followed the recommendations of our pediatric oncologist, a compassionate doctor who cared very much about Jacob. Later, we took an active role in researching and finding the best possible care.
Cheryl, a PharmD working in the medical information department of a pharmaceutical company, searched the medical literature and Internet for treatment information. Our dining room became a study hall, piled high with folders and papers. We read articles and had many phone conversations with cutting-edge researchers, but we found our most important role was to be Jacob’s loving parents and advocates. It’s amazing how different the practice of medicine looks when one is the consumer—as opposed to the provider—of care.
Management of neuroblastoma involves various philosophies and complex treatment regimens. Jacob received three rounds of aggressive inpatient chemotherapy, underwent a peripheral-blood stem-cell collection, then withstood another two rounds of chemotherapy. After a grueling nine-hour abdominal surgery, he received another two rounds of chemotherapy, a stem-cell transplant, radiation, monoclonal antibodies, and oral cisretinoic acid. At each new phase of treatment, I would get advice from neuroblastoma experts. The decisions were tough and agonizing—neuroblastoma must be treated right the first time, because the odds of survival diminish to about 10 percent with relapse.
Our medical backgrounds were helpful for Jacob, but sometimes problematic for us. It was incredibly useful to have the knowledge base and resources to find Jacob the best care. The oncologists had an easier time explaining things to us, as we already spoke their “language.” During every rundown of the treatment course, though, I mentally raced through textbooks thinking of all of the horrible side effects of chemotherapy.
We tried not to interfere with Jacob’s care by the medical staff. However, fearful of an overdose from the powerful drugs, Cheryl and I double-checked all the medication orders for dosing errors. At times, the hospital staff resented this, and even made it difficult for us to read Jacob’s chart. But we knew they were only human, and we couldn’t have lived with ourselves if we’d let Jacob down.
Because so many people were involved in Jacob’s day-to-day care, Cheryl and I became the major source of continuity. We kept track of his lab work, major test results, blood counts, and medications. Middle-of-the-night admissions for fever and neutropenia were made easier for admitting residents, because we handed them all the information they needed to write their history and physical as we walked through the door.
Most of the nurses and medical staff we dealt with were compassionate and worked hard to support the needs of the patient and family. But one local doctor repeatedly chastised us for making treatment decisions for our son, telling us we weren’t “objective” enough to do so.
Exchanges like that added to our stress—and made me realize that doctors are only one cog in a very big wheel that determines a patient’s care. The medical team is just that, a team, and should include the family in the decision-making process. I used to make my daily rounds, write my orders, and leave. Now, I remember that for every order and diagnosis given, the consequences are far-reaching for the patient and staff.
Coping with it all
How naive we were initially, thinking we could actually plan a “normal” life around Jacob’s chemotherapy schedule. Although he tolerated the treatments well at first, racing down the halls with his IV pole, the later effects were both physically and emotionally difficult. The excreted chemotherapy agents burned his bottom, despite almost constant diaper changes.
When Jacob’s blood counts reached their nadir, we made trip after trip to the hospital for blood and platelet transfusions. He was admitted for fever, neutropenia, and other complications such as disseminated intravascular coagulation, croup, sepsis, and central line infections—often going from status quo to intensive care in a matter of hours. Jacob was hospitalized essentially one out of every two days for the first eight months. There were many scary moments when we felt we were losing him.
During his stem-cell transplant, Jacob suffered through painful mouth ulcers and subsequent mucosal sloughing, causing thick secretions to obstruct his airway, almost to the point of requiring a ventilator. He would sit listlessly on our laps, requiring blow-by oxygen and a suction catheter whenever he began to aspirate his secretions. We bathed him in Hibiclens every six hours to prevent skin burns from the chemotherapy. Etoposide led to a rapid drop in his blood pressure, along with an unexpected hypoglycemic reaction.
The transplant was followed by 100 days of strict isolation at home, with no visitors. As soon as I came home from work, I’d immediately shower and change clothes, fearful I had brought in some innocuous germ that could be deadly to him. At work, it was hard for me to deal with seemingly trivial issues, such as parents complaining about being up at night with a child’s ear infection. I wanted to tell them how lucky they were.
It was wonderful having Jacob home from the hospital, but his care was sometimes overwhelming, especially for Cheryl, who was the primary caregiver. We learned to mix and administer total parenteral nutrition, give shots and numerous oral medications, and change central-line dressings. He stopped eating because of the chemotherapy and was attached to a central IV line for his TPN for about 10 months—at first for 24 hours per day, then a more merciful 18 hours daily.
It was a game for him to see how far he could run, but we’d have to chase him madly lest he pull out his line. Because we had to stay within a few feet of him, routine activities like cooking and going to the bathroom became new challenges. It’s amazing how much energy a 2-year-old has—even one attached to an IV line. At bedtime, we took turns sleeping in Jacob’s room to untangle the IV line and catch vomitus caused by the chemotherapy. Sleep-deprived and barely surviving, we wondered how on earth “regular” parents learned to do all this. Jacob finally graduated to a feeding tube, followed by months of relearning to eat normally
A family undersiege
Our older son, Nick, was 4 when we told him Jacob was sick and in the hospital. An intelligent, sensitive, and perceptive child, he immediately asked if Jacob was going to die. We told him we were going to do everything possible to keep that from happening. It was hard for him to understand why Jacob got so much attention and why we were at the hospital so often. Like any preschooler going through this type of experience, he was angry but had difficulty verbalizing his distress. So Nick acted out and clung to us. Parenting is difficult, even under normal circumstances, and our situation was hardly normal. We needed the hospital psychologist to help our family adjust to this new, unwanted lifestyle.
The type of stress we were experiencing can strain a marriage to the breaking point. In our situation, the opposite occurred. Cheryl and I became closer than ever before. Indeed, we made a perfect team, dividing the labor of Jacob’s care and keeping each other emotionally afloat. Without my wife, I would not have survived. The psychologist advised us that expressing anger, grief, and disappointment meant we were healthy—and, boy, were we healthy!
Most of our family, friends, neighbors, and co-workers were very supportive, although a few chose to distance themselves. Overall, it was very humbling to be the recipient of such love and concern. My in-laws lived with us off and on during much of our ordeal, which was a lifesaver. Cheryl’s company flew us to New York City on their corporate jet for treatment, and the president of the company went out of his way to divert the plane when we needed a ride home.
Others babysat big brother Nicholas at the drop of a hat, provided home-cooked meals or funds for take-out meals away from the hospital, donated money for neuroblastoma research, and helped get us through the rough times with prayers and countless other acts of kindness. Our faith in humanity was confirmed.
Looking for resources
How many times are physicians confronted by a patient who’s gathered medical knowledge from the Internet? Before Jacob was diagnosed, I would listen, but I took all these findings with a grain of salt. That changed after Jacob’s diagnosis.
Our local children’s hospital treats only a few cases of neuroblastoma per year, which made us feel quite isolated. The Internet became a wonderful tool that allowed us to connect with other families going through the same ordeal. An Internet support group for neuroblastoma families around the world, which “meets” via the Association of Cancer Online Resources (www.acor.org), has been incredibly helpful. These parents “get it” in a way that even our relatives and friends cannot, because we’re all members of a club nobody wanted to join. We exchange information about available treatments, laugh and cry together, and mourn together when a child loses the battle. We’ve even gotten to meet many of these brave families. As physicians, we should recommend similar support groups to patients with life-changing diagnoses.
After Jacob was diagnosed, our answering machine was flooded with messages from friends and family. Out of necessity, we began sending out e-mails, called “Jacob Updates,” so that everyone who was interested could be apprised of how he was doing. This freed us from having to repeat the exhausting details with everyone by phone. A patient from my office developed a Web site (see members.aol.com/nrainh20/jacob.html) to help with our updates. The site brought us prayers from around the world and increased the awareness of childhood cancer.
Legislation regarding health care suddenly became very relevant to me. Previously, I’d talked about managed care and other health issues with colleagues, but I had no inclination to get actively involved. Jacob’s illness changed my philosophy. Some of the laws that helped us were the Family and Medical Leave Act and the Health Insurance Portability and Accountability Act (HIPAA).
Cheryl immediately took a leave of absence from her job to care for our son. Her employee benefits, including health insurance coverage for Nick and Jacob (I had my own policy), continued for three months. Then, thanks to HIPAA, we were able to put the entire family on my work plan (a PPO with out-of-network coverage) when her leave ended, without fear of coverage being denied due to pre-existing conditions.
The transfer of benefits was timely, as 11 days after Cheryl’s leave ended, we traveled to New York for Jacob’s surgery. Had we been forced to stay in her HMO, we would have had no out-of-network coverage and would have been responsible for thousands of dollars in hospital and doctor bills. Alas, our benefits did not come without costs: Insurance premiums have skyrocketed for the practice and employees.
Keeping up with bills was a heavy burden. Payment would often take several months, particularly if the claims underwent “medical review.” Meanwhile, we would receive “past due” notices from the hospitals and doctors. The insurance company denied coverage many times for exceeding “usual and customary charges.” We spent hours writing letters explaining that the charges were reasonable because treating this rare disorder meant specialized tests.
To complicate matters, the hospitals and doctors offices often erred in their billing—sometimes comically so. Once we were billed several hundred dollars for “amniotic fluid testing.” Cheryl called the hospital to let them know Jacob was a 2-year-old boy who had never been pregnant! Even going to in-network health providers sometimes resulted in erroneous bills. Next to the medical articles stacked high in the dining room were endless bills and insurance paperwork.
The average doctor may not realize that patients, too, must deal with the constraints of managed care and other third-party payers. We need to remember this when patients call our offices to straighten out a bill.
During Jacob’s treatment, our worst financial problem was getting insurance coverage for the last step, monoclonal antibody therapy. The antibodies are a critical component of keeping him in remission. FDA approval has not been sought for this effective therapy, however, because there are no investors to support such a rarely used procedure. Essentially, for neuroblastoma, even standard-of-care therapy will never get out of Phase 2 and 3 trials because of the small number of patients.
For three months, our insurance company denied coverage, calling the therapy “experimental.” This made no economic sense to us. As we pointed out to them, it would cost roughly 15 times more to treat a relapse than to keep Jacob in remission by using the antibody therapy. Worse yet, they refused to allow an oncologist to review Jacob’s case. With two denial letters in hand, we went to New York anyway for Jacob’s first round of antibody therapy. After much letter writing, research, phone calls, and persistence, the insurance company conditionally agreed to cover most of the costs associated with this therapy. We anxiously await the passage of a patient bill of rights that would ensure patients access to high-quality clinical trials and guarantee that they’re not denied necessary care.
It was disheartening to learn how little money goes toward neuroblastoma research. In 1998, the National Cancer Institute had a budget of $2.55 billion; only $8.9 million, or around 0.3 percent, was allocated for neuroblastoma. There was no money for neuroblastoma research in the American Cancer Society’s 1998 budget, and less than half a million in the society’s 1999 budget. We couldn’t help but wonder whether a more generous allocation could have yielded treatments of benefit to Jacob and others.
To help raise public awareness of the need for research funding, our local television station did a story on Jacob. (He slept through his big debut!) Kathy and Joe Figliuolo started the “Katie’s Find a Cure Fund” in honor of their daughter, Katie, who died of this horrible disease (see www.kfac.net). Tax-deductible contributions of any amount may be sent to:
Katie’s Find a Cure Fund
1275 York Ave.
New York, NY 10021
Every penny goes toward neuroblastoma research by the Memorial Sloan-Kettering Cancer Center neuroblastoma team under the leadership of Nai-Kong Vincent Cheung, MD, a brilliant scientist and compassionate pediatric oncologist.
Where are we now?
Almost one year to the day from diagnosis, our prayers were answered when we were told Jacob was in remission. Such words of pure JOY! The only visible effect on Jacob is his “ears”—the hearing aids that he wears to correct the auditory-nerve damage he experienced as a side effect of the cisplatin chemotherapy. He is a wonderful, happy, well-adjusted 3-year-old who loves Barney and Teletubbies.
Being there for Jacob and being his advocate was the greatest gift we could have given him and ourselves. Our lives are slowly returning to normal, but with a new perspective. We realize the importance of reaching out to others who may need our love, support, and friendship as they go through their own trials. We will always live with the fear of a relapse and possible death, but we hope, pray, and continue to fight for a cure for this deadly cancer. We have a deep appreciation for each day that we get to spend with Jacob.
As for my work, I’ve found a new motivation in the way I practice. The natural business of doctors is reassurance. We find it easy to focus on the technical side of medicine, but we shouldn’t forget patients’ emotions. Nowadays when I have to give patients bad news, I really feel for what they’ll have to go through. Some patients know our family is still fighting this battle, and yet I am maintaining my practice and trying to lead as normal a life as possible. I think this helps them deal with what life has just thrown them. I’ve had parents tell me that our experience has helped them realize what is trivial and what’s important in life.
We often focus on the negative as professionals in today’s health care environment. But regardless of Jacob’s outcome, this experience has forever changed the way I view medicine.
Copyright 2000. Medical Economics.