By Jessica Garcia, May 2012
Irma Lira wasn’t satisfied when she took her son, Ricky Ramirez-Lira, to the doctor several times for benign symptoms that wouldn’t go away when he got sick in October 2009. Ricky had a running fever, an infection in his sinuses and pneumonia – or so the physician said.
Irma finally asked for a blood test.
“(The doctor) said, ‘He doesn’t need one, but if you insist…’ ” Irma said. “The doctor called us at home and he was really surprised and was really sad. He said, ‘Ricky has too many white cells in his blood.’ “
Eventually, Ricky was diagnosed with Philadelphia-positive Acute lymphoblastic leukemia (ALL), one of the more difficult forms of pediatric leukemia to treat. Ricky’s young white blood cells were not maturing to healthy white blood cells, known as blasts, and could not carry out their normal functions. Rapidly, these cells were multiplying and crowding out other healthy cells in the marrow. This was preventing his body from being able to fight off the most minor of infections and was the culprit behind his fever, sinus infections and pneumonia.
He was pulled from school at Damonte Ranch High School and taken to Renown Regional Medical Center. From there, in less than two hours, Ricky and his family were ordered to go to the Children’s Hospital in Oakland Research Center Oakland and he was put in intensive care for two months. The doctors immediately put Ricky on a chemotherapy regiment of 14 pills in the morning and eight in the evening as well as infusions to induce remission.
“It’s been really tough,” Ricky said. “I had to take online classes. It’s been difficult (being away from my friends), but I still keep in touch with them. I didn’t want to put any burdens on them. I can’t hang out with them, but they understand it’s hard.”
He’s now enrolled in the Washoe Online Learning for the Future (WOLF) program through Washoe County School.
It seemed, after a while, that the cancer was going away. He was in chemotherapy for 14 months but then Ricky relapsed. Doctors ordered a grueling bone marrow transplant, which took place in October last year. So far, the mother and son said, it seems it was successful.
“He has to wait one year to see if his body’s not rejecting the bone marrow,” Irma said. “We have to be careful.”
They try to stay focused on living a typical life, she said.
“You try to live life normally, but for a minute, you forget everything and you’re thinking everything’s okay,” she said. “The next minute, it’s still the same – all the medication. I have to remember he’s still sick. I don’t want to lose my son. I have really good faith in this transplant.”
Irma said she gave up her job as a clinical aide in the Washoe County School District once Ricky became sick. Ricky’s father and his older brother traveled frequently to the Oakland hospital.
“He is my full-time job,” she said. “When they give it to you, when they tell you your child is sick, it’s hard when you receive this diagnosis. But when they tell you it’s back, it’s double painful. You say, ‘If the chemo fails this time, what is next?’ The chances to survive again are really low.”
Ricky, who jokes that his mom is his secretary, said the journey has been more difficult than he thought.
“When I relapsed, I psyched myself to go through it,” he said. “I couldn’t get out of bed.”
Like most patients who undergo chemotherapy, he lost his hair. But it wasn’t just once.
“You lose it once and it’s like, okay, I’ve lost it once and I can lose it a second time,” he said. “It was just emotional.”
But he won’t let it stop him from walking the stage in June to get his high school diploma. He also said he won’t let it impede him from accomplishing all the other plans he has for his life.
“You have to keep being optimistic and not get depressed,” he said. “You just have to keep moving forward and smile each day. Be thankful you’re still alive. You have to try to be normal.”
Both mother and son expressed their appreciation for Northern Nevada Children’s Cancer Foundation, which has provided financial and emotional assistance to them.
By Jessica Garcia, September 2011
Steve and Stacy Gowing of Spring Creek, Nev., near Elko, have four children, ages 6 to 12. With one child recovering from leukemia, another in the midst of treatment for the same and a third who is diabetic, Stacy said her children strangely are accustomed to the syringes, the medications, the medical visits, the tests and everything that comes with them.
The family’s first introduction to leukemia, a cancer of the blood or bone marrow created by a rapid and unusual increase in blood cells, began with Zach in August 2002 when they lived in Tucson, Ariz. After complaining of leg pains, his parents noticed bruising and petechiae. Doctors diagnosed him with acute lymphoblastic leukemia, or more specifically, Philadelphia Chromosome, a subtype of the illness that is most common in children. Immediately, he needed a bone marrow transplant, but no one in the family was a direct match to Zach, so doctors went to a registry. Finding a match for Zach, Stacy said, was “astronomical” but possible; Zach had his transplant done in December 2002.
It seemed to work until 13 months later when he relapsed in 2004 and went in for a second marrow transplant. Complications arose and he was diagnosed with aspergillosis, a fungus that eventually found its way into Zach’s brain and narrowly avoiding his cognitive abilities.
In June 2010, Sydnee also began developing bruises similar to those Zach had, but tests showed Sydnee’s leukemia was not of the same subtype as her brother. For more than two years, the Gowings have made monthly drives to Salt Lake City, where Sydnee is being treated.
It was the second time around for the Gowings with more doctor’s visits and more responsibilities to bear while maintaining hope that their children would get well.
But, Stacy said, none of the family’s circumstances ever dampened their spirits, including those of their kids.
“She’s a rough-and-tough little girl,” Stacy said of the family’s youngest. “Kids don’t know anything else other than you don’t have a choice. It doesn’t stop them. The chemo(therapy) has never brought any of (my children) down. It is what it is. My daughter says we have to do what we have to do. … They’re all wickedly smart.”
The Gowings look to the future with courage and the hope that they can help someone else who might be going through a similar situation.
“We always try to deal with the cards we’re dealt,” Stacy said. “That’s just how it is. Another cancer mom turned away from me. She didn’t want to hear of another child (in the family) getting cancer. It spooks other cancer people. No matter how big or how small, it’s still horrific. They are just horrified by our story.
“Every time I walk out of a primary (doctor’s office), I thank my lucky stars,” she said. “I’ve seen children way worse off than ours.”
Tyler Bevill is an artistic boy of almost 5 years old; he is also a child with cancer. Tyler was diagnosed with acute lymphoblastic leukemia (ALL) on April 1,2010.He since has undergone six months of intense chemotherapy and soon he will begin the next phase called maintenance, which will continue for about two-and-a-half years.
Home for Tyler is the close knit community of Milford, Calif., about halfway between Reno and Susanville where he lives with his mom Nancy and sister Emily. One spring, Tyler was enjoying a vacation and visit with his dad at Lake Tahoe.He was taken to a local clinic after he wasn’t keeping up with the day’s sledding activity and his dad noticed petechiae on his legs, a sign of low levels of platelets in the blood.The clinic referred him to the nearest hospital in Truckee. It was at the hospital that his parents learned how serious their son’s condition was – it looked to be leukemia.
Tyler needed to be transported immediately via ambulance to Children’s Hospital and Research Center Oakland, where he would spend the next two weeks.Nancy drove from to Truckee as fast as she could so that she could join him in the ambulance.Snow on the road did not make her trek easy; she had a run-in with a tree exiting the freeway and this would not keep her from her son as she kept on driving to the hospital to meet the waiting ambulance.
In retrospect, prior to that day, Tyler had been experiencing several non-specific symptoms common to leukemia; he said he had aching legs, his brain hurt (headache), had pale skin and generally was run down.Parents chalk these up to growing pains, cold/sinus pressure, etc. Cancer is the last thing a mom or dad suspect.
Tyler has been coping pretty well with all the medical appointments, hospitalizations, at home medications and restrictions of treatment.During this first part of treatment, his immune system can crash to dangerously low levels, so Tyler had to stop attending preschool, but should return some time after the next phase of treatment begins.After the initial diagnosis and inpatient treatment, he had been hospitalized twice each for more than two weeks at a time due to fever or infection.In addition to the toll this takes on Tyler, the entire family is affected in many ways.
Fortunately, the family lives in a supportive community and has the additional support of the services provided by NNCCF in the form of financial and travel assistance.
Although Tyler is not attending preschool right now, his big sister Emily, two years older than him, exposes him to plenty of numbers and letters to keep him up to speed.Emily and Tyler are great companions and share an artistic streak; they love to draw and color together.Lately, Tyler has been gearing up for Halloween by drawing witch hats and pumpkins.Tyler also has a talent for building things out of blocks and Legos and has no trouble keeping himself busy with these activities.
By Suzanna Hartman, May 2009
Brad Zugel, a seemingly healthy 11-year old student at Spanish Springs Elementary School, was taken to urgent care on Sept. 28, 2008, for a cough. Brad was preparing to leave on a field trip to Point Benita in San Francisco, Calif. the next day.
Brad’s parents, Kevin and Michelle, wanted to have a prescription on hand in the event his cough got worse on the trip. Because Brad’s cough was persistent and was accompanied by pain in his side, the urgent care physician ordered a chest x-ray to check for pneumonia. Due to irregularities on the x-ray, the urgent care doctor ordered a CT scan at Renown Regional Medical Center that same night. On Sept. 29, Brad already was on the bus with his classmates when his father received a phone call advising him that Brad must be pulled off the bus and taken immediately to Children’s Hospital and Research Center Oakland. The CT scan indicated a mass in Brad’s chest area.
Within a few days, Brad was diagnosed with lymphoblastic lymphoma. Brad’s treatment is planned to last two years. The most intense phase of the treatment has passed and Brad is currently in the maintenance phase, which consists of repeating cycles of daily oral chemotherapy and lumbar puncture treatments given at Renown.
Brad is a bright, fun-loving, energetic young man who is an avid baseball player, a music lover and brother to 13-year-old Jake, who attends middle school. Brad is a student in Miss Chaney’s sixth grade class and is a favorite among fellow students, teachers and his many friends.
Since his diagnosis Brad has not attended class at school due to being run down from his treatment and the side effects of a weakened, at times almost non-existent, immune system. Although the isolation is par for the course with cancer treatment, it is far from the normal busy life of an active boy of 11. It has been hard on Brad being away from his friends. Jake is his best buddy and they have kept each other company during these past hard months.
Brad loves playing guitar and saves his money only to be spent on music equipment. To say that he is really into guitars is probably the understatement of the year. If anyone is looking for an 11-year-old guitar aficionado, then Brad’s your guy.
Brad is a character most of the time, but through all of this he has learned and lived the definitions of humility and compassion. When asked what he was thankful for during Thanksgiving, Brad said he is most thankful for medicine, doctors, his parents and brother, family, friends, technology, research, transportation, shelter, food, his pets and, lastly, he said life!
“I was very proud of him when we were discussing this,” reflected Michelle. “What an impressive list for an 11-year-old.”
This list of things would not have existed last year, or even this year, without his diagnosis. He has grown to a new level because he had to. He has discovered a new passion and has expressed that he wants to volunteer someday at the hospital with the sick kids. He has seen many kid volunteers and he thinks it’s pretty cool that they don’t even get paid; they just do it for free!
Having a child diagnosed with cancer affects the entire family and forever changes the lives of each family member.
“Six months is a lifetime when giving your child intense chemo every day,” Michelle said. “We all live in a cancer world.”
She went on to say when raising a child with cancer, there are so many different dimensions to think of: psychological well-being, nutrition, social, activities, school…as parents, we’re not psychologists but we have to do what we can.
Navigating their way through this strange new world of cancer, the Zugels have found a great appreciation for the Foundation. In their words, here are few of the reasons that the Foundation is so special:
- It has been so valuable to us that there is an organization out there that actually works full-time to support us in this, our most trying time.
- Not only have NNCCF and Julie (former executive director) offered support, they understand because they have helped so many families in need.
- We have been able to depend on them for financial needs when we really needed it the most. Having a foundation so willing to help with your mortgage, power bill and medical costs in a time when the whole country is feeling the crunch and, on top of that, having a child with cancer – it is a huge weight off when we can be with our son instead of worrying about how we are going to make it from one month to the next.
They truly are angels. – The Zugels
by Suzanna Hartmann, May 2009
When 13-year-old David complained of a sore knee that started to swell, his parents, Kristi and Bryon, took him to urgent care and were told it was a sprain. When the swelling got worse they took him to his doctor, who ordered the MRI revealing the bone tumor. A week later, David was off to Children’s Hospital and Research Center Oakland for official diagnosis and treatment.
During the course of the next week, David had countless tests and procedures, all the while enduring a great deal of pain. The week finally culminated with David’s official diagnosis of osteosarcoma on Oct. 18, 2007. Thus began David’s grueling course of chemotherapy and invasive surgeries.
Osteosarcoma is a highly malignant, very rare, very aggressive primary bone cancer and it had spread to his lungs. A total of nine metastasized nodules were surgically removed in March and April. Then David had a limb-salvage surgery on Feb. 4, 2008. David was lucky not to need his leg amputated. Instead, this surgery replaced two-thirds of the right femur and knee with titanium. During recovery, he had an unrelated and almost fatal complication with his stomach and bowels, an intussusception. David would spend his 14th birthday on April 12, 2008, in the PICU recovering from the second lung surgery.
After almost one year of treatment, David’s last chemo was celebrated with a party at the family’s church. The end of chemotherapy was a momentous occasion, but it is not the end of treatment for David. To keep up with his normal growth, David had surgery to lengthen his leg and will have others. Due to the aggressive nature of metastasized osteosarcoma and that there is no cure, David will have to be continually monitored with scans for the rest of his life and could experience a late side effect of leukemia from two of the chemotherapy drugs he has taken.
David has been through some of the worst cancer that cancer can throw at a kid and bravely lives with this new reality every day. Despite completing his chemotherapy, David still travels down the long road of recovery, working hard at physical therapy three days a week and trying to get back as much teenage normalcy as possible. About her youngest son having cancer, Kristi Koury said, “We still find it so very surreal and unreal!” And unreal it certainly is.
The following is an excerpt from David’s website written by his mother Kristi:
“Osteosarcoma turns beautiful young children into warriors wise beyond their years. Fighting battles that only they can face. Deciding to endure, they hang up their lives on a hook in the corner. Soccer jerseys, football helmets, hockey sticks, basketballs, scooters, bicycles, dirt bikes, skateboards and Barbie dolls stand still and silent now. They are armed anew with the uniform of the cancer patient. Broviac catheters threaded deep into their chests, bald heads, bodies hairless and thin and covered with scars. Limping slowly and steadily on heroic limbs absent of their natural bones, they just keep moving forward. They are all tremendously brave kids. I know some of these kids; besides mine. Some I only know through a website; Chris and little Teagan I know personally. I know these children’s lives have forever been changed by an uninvited monster called Cancer~~Osteosarcoma in specific. These children live from hospital visit to hospital visit; chemo to chemo; and (in David’s case) from surgery to surgery. I don’t know any adult that could handle the brutality of this life, and yet I watch my son, Chris, and Teagan endure it. Are they happy about it? NO! Do they do it anyway? Yes, they do. They put life into perspective. They prove what is really important and what is trivial. And I have seen more courage in the three children that I have watched go through this than I have seen in all the adults in my life put together! I know I wouldn’t handle it as well as these children have. I am so proud of David, Chris, and Teagan! They are truly amazing children. I really wish all of you could know David, Chris and Teagan — you would be richly blessed by these children.”
by Christine A. Smith and Tim D. Smith, Bailey’s Nonny and Papa, January 2009
Bailey Johnson was a happy 9-month-old, or so we thought. On Dec. 29, 1999, that happy baby was diagnosed with stage IV neuroblastoma. Our lives were changed forever.
Seeing such a small baby suffering so much and going through the many ordeals that he has had to endure would break even the toughest heart. Seeing the pain in our daughter and son-in-law’s eyes almost was too much to bear. We all pulled together to help in the fight of our lives. We were told that if Bailey lived through the night, he would certainly not see his first birthday! Those are the words that no grandparent or parent should ever have to hear.
After surgeries too numerous to count, interoperative radiation therapy, external radiation, many bone marrow aspirations, 13 rounds of high dose chemotherapy and a bone marrow and stem cell transplant all by the age of 2 1/2, Bailey relapsed three more times and had to continue on oral chemotherapy for two years. He was a four-time cancer survivor by the age of 5. He has been without treatment for three years and almost five years CANCER-FREE!
All of Bailey’s treatments are at the University of California, San Francisco Medical Center in San Francisco, five hours away from our homes in Lake Tahoe. Many thousands of miles have been driven to find the level of care that should be available to all children. Bailey’s medical bills have well exceeded the $2 million mark. Funding cuts for research have made it next to impossible to hope for a cure. Each day, many children are diagnosed with childhood cancer and each day, too many of those children lose their battle to the monster.
Our lives are spent raising both funding and awareness about childhood cancer. We participate in St. Baldrick’s and have raised more than $100,000 in the last three years by shaving our heads to help find a cure. We have participated in Alex’s Lemonade Stand, Relay for Life and the Northern Nevada Children’s Cancer Foundation golf tournaments, as well as many other fundraisers for foundations that are fighting childhood cancer. We speak at events on the subject of childhood cancer being the number one killer of children of disease. Every waking moment in our lives is touched by this disease. Our entire family has been affected by Bailey’s cancer diagnosis. His pain and suffering have been experienced by not only our family, but entire communities. If it were not for support of said family, friends, communities and miracles, Bailey would not be here to attest to the need for more funding.
Needless to say, Bailey has proven the doctors wrong and has survived to be almost 10 years old. He continues to have very expensive testing every six months and we will never be sure if things will ever be okay for him. Bailey faces numerous other challenges related to his cancer. He has some hearing deficit, is missing several of his adult teeth and will have to have years of extensive oral care. He has diminished muscle strength and has growth problems with no real hope for normal stature and has some difficulties with learning due to all the poison that he has had to take.
Through all of this pain and suffering emerges a bright, caring, happy child who lives for ice hockey. Even though his stamina is limited, he gives it his all when he is lucky enough to be on the ice with his little brother, Cameron, and his team. He loves golf and is learning to ski and enjoys camping and fishing with his family. Bailey’s journey is still one of hope. With continued support of bills such as the Conquer Childhood Cancer Act, children like Bailey will continue to keep that hope alive.
by Amy Riley, board member, November 2008
Giovanni Hartman is learning how to write his name. When he’s not working on his alphabet, this high-energy, rambunctious 5-year-old loves playing with his little sister and drawing pictures. He also loves to ride his tricycle around the house and get into trouble! But every so often, another child will ask him a question about the tube pinned to his shirt and with the unabashed honesty that comes naturally to a 5-year old, Giovanni will show curious kids how the tube (a broviac) is actually connected to his chest. Sometimes, he’ll try to explain how the tube is working to help him fight the cancer in his body.
“Giovanni is amazing,” said mom Suzanna. “Of course, he asks questions and gets angry sometimes — he’s 5. But he’s had to grow up so fast and deal with such heavy subjects and try and process what he’s going through.”
It was just last year, a few weeks after Christmas, when Giovanni’s parents began to suspect something was wrong. The hustle and bustle of the holidays was followed by the exciting news that his mother was pregnant, but the typically precocious Giovanni seemed quieter and calmer than usual. A few weeks later, a visiting aunt noted that her nephew looked unusually pale and his cousins were surprised when he didn’t want to play outside in the snow. Suzanna made an appointment with the pediatrician for the coming week. Although she assumed her son was merely coming down with something, Suzanna and Giovanni’s father, Bret, had noticed several troublesome things in the weeks since Christmas and instinctually, they compiled a list for the pediatrician: a few bruises in odd places, a pale complexion, an irregular appetite, and a notable lack of energy for routine, everyday activities. The Hartmans thought Giovanni might be anemic and would possibly need a nutritional recommendation.
On the day of the appointment, Suzanna had to work, so it was Bret who took Giovanni to the pediatrician’s office. As the doctor examined Giovanni and reviewed the Hartman’s list of ailments, his level of concern was unsettling. Bret was informed that Giovanni needed immediate blood tests and x-rays. The doctor simultaneously warned him to prepare for some bad news. Suzanna raced from her office to the pediatrician’s, where she and Bret waited to hear the results of Giovanni’s tests. The Hartmans listened as Giovanni’s doctor explained the reality—their five-year old son would need to begin treatment for Leukemia as soon as possible. At that point, his immune system was barely functioning.
Giovanni was airlifted from Reno’s Renown hospital to Oakland Children’s Hospital, where he was diagnosed with Acute Lymphoblastic Leukemia (ALL) and admitted directly to the isolation unit. ALL causes white blood cells to reproduce immature cells at a very fast rate, crowding out healthy red and white blood cells and leaving Giovanni extremely susceptible to germs and infection. The Hartmans remained by Giovanni’s side at Children’s for eighteen days. Suzanna recalls, “Our life was turned upside down. We didn’t know what all was going to be involved, how or where we were going to do treatment, what this meant for our family. We were so scared and so emotional and of course, trying to put on a brave face.”
The doctors inserted a broviac catheter in Giovanni’s chest to aid in drawing blood and administering medication. In an effort to repress the cancer cells, Giovanni quickly underwent chemotherapy. He responded to treatment with minimal side effects and was released to Reno, where he was able to continue receiving treatments through the Pediatric Specialties Clinic at Renown. However, even after experiencing eighteen trying days in Oakland and facing a world turned upside down, the Hartmans still could not return to their home. They would have to wait until several parts of the house could be remodeled to create a more sterile and safe environment for Giovanni’s repressed immune system. The family moved in with Suzanna’s parents and Bret quit his job so that he could stay with Giovanni and work on getting the necessary renovations finished.
The Hartmans finally moved back into their home shortly before Suzanna went into premature labor and delivered Giovanni’s sister, Isabella, a month and a half early. As Giovanni was in some of his most intense treatment, he was allowed only quick visits to the hospital during which he was required to wear a mask and limit his exposure to other people. Inevitably, he began to ask tough questions and express some of his fears, especially for his new baby sister. “He was scared of so many things. Scared for the baby. Scared of being sick, and scared of cancer. We had to be straightforward and honest, but we just tried to follow his lead on questions and keep positive.” Suzanna recalls. Giovanni will be in maintenance therapy for three years.
He has taken three trips back to Children’s for bone marrow aspirations required to regularly test his bone marrow. He is just finishing his first twelve-week cycle of treatments and should be able to start kindergarten, once his steroid reactions are under control. He sees a therapist to help him talk through some of his fears and questions, but mostly, he is ready to turn six and get back to the business of being a regular kid. Giovanni was extremely excited to learn that his broviac will be removed in January—just in time for his sixth birthday and a special trip to Disneyworld with the Make-a-Wish Foundation! He has big plans for swimming and doing the “special things” at Disneyworld with his family. Mom says Giovanni is simply ready to “get back to normal and do the stuff everybody else does.”