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Gold Ribbon Hero Katrina Bugge

Gold Ribbon Hero Katrina Bugge

Katrina’s journey:
Katrina was diagnosed with Stage 5 Wilm’s Tumor on November 24, 2002 at the age of 4. We will never forget that date, where we were, what we did, and what brought us to the Minneapolis Children’s hospital.
Katrina’s little sister, Mariah, was 8 months old when we brought Mariah to a Pediatric Urologist for reoccurring UTI infections. During Mariah’s visit the doctor asked many questions about our family medical history. We shared with the doctor that Katrina had had 1 kidney infection in April, was currently doing the potty dance and on occasion would have an accident. Towards the end of the appointment the doctor decided to do an ultrasound on Mariah’s kidneys. He thought that it would be a good idea for us to have an ultrasound done on Katrina’s kidney too as 1 kidney infection can cause damage. We told him that Katrina was in the waiting room with her grandma. He checked his schedule and said that he had time for both girls. I went to the waiting room to get Katrina. Mariah’s kidneys looked perfect. The ultrasound tech told us that she could not see Katrina’s kidneys very well so we needed to check in at the hospital where the more advanced ultrasound machines are. After that ultrasound, we heard the words no parent wants to hear, your daughter has cancer. Katrina was immediately admitted to the hospital. The following days were a blur.

Katrina underwent 27 weeks of chemotherapy, 3 surgeries and radiation. She handled the treatments well until the last couple of weeks. Her weight become dangerously low so they gave her medication to increase her appetite. Wow, did she eat. She was back to her average weight within 2 weeks. The last 4 chemo treatments were very hard on Katrina’s body. She began to lose muscle tone on her left side. Her eye lid was droopy, she didn’t have much strength in her arms and legs and she got “club foot”. The doctors decided not to administer the last round of chemo. Her surgery went as expected. Following the surgery was radiation. Then we heard the words, “Katrina is in remission”.
Our doctor told us that Mariah saved her sisters life. They will always share a special bond!

Why Katrina is a Gold Ribbon Hero:
She was the strongest and bravest little girl we knew. Many times, Katrina would comfort us when she saw tears in our eyes. She would say, “Mommy and daddy I am going to be okay. The bug in my tummy is going to be gone soon.” Even on the toughest days, her smile would brighten the entire room.
As parents, it was so hard to understand why our daughter had cancer. Why did God choose Katrina? For many years we asked ourselves why was my daughter diagnosed with cancer, we are now able to answer that question with confidence. She was diagnosed with cancer to be the role model of hope for the children and families faced with cancer.

Today Katrina is a 15-year childhood cancer survivor. Katrina never let cancer define her; however, it is a very important part of her life. Every day she sees the scar on her stomach and is reminded of how fortunate she is to enjoy the new adventure each day brings.

Two years ago, Katrina created a personal platform, “Inspire a Golden Journey”, to inspire hope in children and families faced with childhood cancer. Katrina would like the children to realize that even though they may have little control of their disease, they cannot let it define them, and for them to create their own personal golden journey just as she has.

This year Katrina goal was to give back to the community that supported her during her journey with cancer. Katrina raised over $8,000 for the Infusion Center to purchase new chemotherapy chairs. The new chairs will replace the chairs that she sat in when she received chemotherapy. The chairs have heated seats to help control their body temperature, back massage to help relax back muscles, full back recline for patients to sleep if fatigued, trays for food or personal devices along with other features. Her other accomplishments include Painting the Community Gold for Childhood Cancer Awareness month, spoke at a National Lions Convention about her personal experience with pediatric cancer and made 50 activity kits for children in the hospital undergoing chemotherapy.

Katrina is making a difference of the lives of those faced with cancer. This is why we feel Katrina is a Gold Ribbon Hero.

Date of Diagnosis:
11/24/2002

Status:
Survivor

Cancer Type:
Kidney Cancer Stage IV

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Gold Ribbon Hero: Regan Schott

Regan’s journey:

Regan was diagnosed at 7 months old with stage 4 MRT… she fought hard without any complaining or fussing for 6 months before being given the terminal diagnosis. She was always a ball of energy and smiles. If you didn’t know she had cancer you’d never have been able to tell from her actions. She always had bright eyes for the doctors and nurses while making them laugh. She was strong all the way until the last days and even at the end she managed to find a way to smile. She will always be my hero and my personal angel.

Why Regan is a Gold Ribbon Hero:
She’s a gold ribbon hero because she didn’t once complain about treatment, or being stuck in hospitals. She always went with the flow and seemed to make the best out of all of her situations. While her journey was short, it was hard and she took it like a champ. Even proving doctors wrong on a few occasions and always giving the nurses a reason to smile.

Nominee’s Fundraising Page:
https://www.youcaring.com/darylschottandfamily-790434

Other social media pages:
www.reganstrong.blogspot.com

Date of Diagnosis:
04/01/2017

Status:
In Memory

Cancer Type:
Malignant Rhabdoid Tumor (MRT) Stage IV

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Childhood Neuroblastoma Cancer: Causes, Risk Factors, and Prevention

What Causes Neuroblastoma?

neuroblastoma-stage-1Neuroblastoma is caused by the abnormal development of immature nerve cells known as neuroblasts. As a fetus develops, most neuroblasts grow and eventually become mature nerve cells either before birth or in the first few months after birth. However, in some cases, neuroblasts do not develop correctly. Instead of becoming mature nerve cells, they continue to grow and divide. In some cases, these abnormal neuroblasts simply die off; however, in some rare cases, they develop into tumors or neuroblastoma.

Because neuroblastoma begins with the abnormal development of fetal neuroblasts, it is the most common type of childhood cancer in children under the age of one. As children grow out of infancy, these abnormal neuroblasts become less likely to either develop correctly or die off and more likely to turn into neuroblastoma. The average age of diagnosis for neuroblastoma is between 1 and 2 years of age, while 90% of all cases of neuroblastoma are diagnosed by the age of 5. Neuroblastoma is rarely found in children over the age of 10.

Unfortunately, scientists do not know why some neuroblasts develop and mature normally and others do not. Research is beginning to show a link between the development of neuroblastoma and abnormal changes to the DNA in the neuroblasts. These DNA mutations cause neuroblastoma cells to have an abnormal chromosomal structure (either too many or too few chromosomes). The abnormal chromosomal structure may cause the neuroblasts to develop into neuroblastoma; it may also impact how quickly the neuroblastoma grows and develops. In rare cases, this abnormal DNA is inherited from a parent. However, in most cases, it is the result of random gene changes that occurred at some point in the child’s development.

Can Neuroblastoma Be Prevented?

Random DNA mutations during fetal development, like the ones that scientists believe may be linked to the development of neuroblastoma, are random events that, in most cases, do not have a specific cause or trigger. Scientists do not believe that these specific DNA mutations are caused by lifestyle or environmental factors (as is the case with some types of adult cancers). Therefore, there is no way to prevent these DNA changes or the development of neuroblastoma. In fact, at this time, there are no known ways to prevent most forms of childhood cancer.

What are the Risk Factors for Neuroblastoma?

A “risk factor” is something that may impact your child’s chances of developing cancer. For example, some types of adult cancers may be linked to lifestyle choices, such as smoking, or environmental factors. However, there are no known risk factors linked to lifestyle or environment for most forms of childhood cancer, including neuroblastoma.

The two biggest risk factors for neuroblastoma are age and heredity.

  • Age: Most causes of neuroblastoma are diagnosed in children between the ages of one and two, and 90% are diagnosed before the age of 5.
  • Heredity: 1% to 2% of neuroblastoma cases seem to be the result of a gene inherited from a parent. Children with familial neuroblastoma usually have one or more family members who also had neuroblastoma as infants.

However, it is important to remember that neuroblastoma is an extremely rare disease, with only about 700 cases diagnosed each year.

Scientists also believe that having birth defects, or congenital anomalies, may also be a risk factor for neuroblastoma. Although the link is not yet clearly understood, scientists believe that genetic mutations in the DNA that cause birth defects may also increase the likelihood of abnormal cell development leading to the development of childhood cancer. Again, however, it is important to note that neuroblastoma is extremely rare and most children with a congenital abnormality will not develop neuroblastoma.

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

 

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

Steps to finding the right cancer clinical trial for your child

What is a Clinical Trial?

Clinical TrialClinical trials are a part of long-term research studies designed to develop and test potential new treatment options for cancer and other illnesses. When a team of physicians and/or scientists believes they have developed a potentially effective new treatment, they will first study the treatment in the lab, and then potentially test it on animals. If the new treatment shows promise, it may be tested in people through a multi-phase clinical trial. This is an important step in determining whether a new treatment gets government approval and can be incorporated into existing treatment protocols. Clinical trials are a critical part of the on-going fight to develop new and better treatment options for cancers, especially childhood cancers.

Is a Clinical Trial Appropriate for My Child?

More so than adult cancers, every type of childhood cancer is considered a rare disease requiring an extremely specialized treatment approach unique to that particular type of childhood cancer. Volunteering your child for participation in a clinical trial may have important benefits for both your child and for the future of childhood cancer treatment more broadly. Your child may receive the benefit of new, more effective, and less toxic medications, while researchers have the opportunity to see how effective their new treatment is.

While some clinical trials for childhood cancer may be funded by private organizations and pharmaceutical companies, most are sponsored by the federal government through the Children’s Oncology Group. The trials are performed by specialists in pediatric oncology at major treatment centers around the United States (and globally), including for example St. Jude’s Research Hospital, Dana Farber Cancer Center, Duke Comprehensive Cancer Center, MD Anderson, and others. The Pediatric Brain Tumor Consortium also sponsors clinical trials specifically for childhood brain tumors.

How Do I Find a Clinical Trial?

If you believe your child may benefit from participating in a clinical trial, the first step is to discuss the possibility with your child’s oncology team. He or she may know of a clinical trial that would be appropriate, but if not, he or she can help guide your search, including providing information, answering your questions, and suggesting avenues of research. Do not be shy about or afraid of discussing this openly with your child’s oncology team! These specialists understand the importance of clinical trials generally, and the potential benefit for your child more specifically.

The process of identifying an appropriate clinical trial can feel like a daunting process. However, staying organized and focused while walking through a few clearly-outlined steps, while discussing these options with your child’s oncology team, can make the process more approachable:

  1. Have all relevant details about your child’s cancer readily available. These details will help you winnow out clinical trials that are not relevant and will help guide your conversations with trial coordinators. Work with your child’s oncology team to complete the National Cancer Institute’s Cancer Details Checklist, then keep this Checklist handy throughout each step of your search.
  1. Research appropriate clinical trials. Unfortunately, because clinical trials are sponsored by a wide variety of different types of organizations, there isn’t a “master database” with every single ongoing trial. However, most clinical trials for childhood cancer are sponsored by the Children’s Oncology Group, so the two best places to start your search are:

Other search options include contacting one or more of the 69 NCI-Designated Cancer Centers across the Unites States; these organizations maintain lists of the clinical trials they are conducting and may be able to help you determine which ones, if any, may be appropriate for your child. Childhood cancer advocacy groups may also be able to provide helpful information as well.

  1. Gather information on specific clinical trials relevant for your child. Look at the protocol summary for each clinical trial you believe may be relevant, and compare it to your child’s Checklist. The following questions may be helpful in determining whether to pursue one or more specific trials:
    • What is the main objective of the clinical trial?
    • Does your child fit the eligibility requirements?
    • Where is the trial being conducted?
    • How long will the clinical trial run?
  1. Contact the Trial Coordinator. Once you have found a clinical trial that may be appropriate for your child, you must contact the “trial coordinator”. Usually this point of contact is included in the protocol summary. The trial coordinator will decide whether the clinical trial is appropriate for your child, and if so, help arrange a meeting with a physician who is part of the trial team. Your child’s oncology team may also be able to help with this initial contact.

Participating in a clinical trial will directly impact your child’s health and cancer treatment plan. Therefore, it is absolutely critical that you move forward ONLY with the knowledge and approval of your child’s oncology team. Ask your child’s doctor about the potential risks and benefits of participating in the trial, especially as compared to the risks and benefits of traditional treatment. Your child’s team can help you decide if moving forward with a clinical trial is in the best interest of your child’s short- and long-term health.

  1. Make an Appointment. Once you and your child’s doctor have decided to move forward with participation in a clinical trial, it is time to make an appointment with the trial team. The trial team will make a final determination about eligibility, help you understand all the potential risks, and define the next steps in your child’s treatment.

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

 

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit: