CureSearch Goes MOM on Cancer

 

This month CureSearch goes MOM on cancer!! And so can you!

Moms are relentless, fighting hard, and sacrificing anything to help their children. We're making mom's energy into a verb. Because whether you're a mom, a dad, a grandparent, sibling, doctor, or anyone who loves, or has loved, a child with cancer, you know that MOM energy describes what is required in the pursuit of cures.

Who are CureSearch?

For more than 25 years, CureSearch has been a leader in funding children's cancer research. During this time, overall cure rates have increased from approximately 40% to 80%. But, for many of the more rare cancers, cure rates remain unchanged. During this same time, only 2 drugs have been specifically developed for children's cancer, a number that is simply not acceptable. Today, as they did decades ago, children are treated using medications developed for adults, but in much higher doses. With decades to live after treatment, children often experience significant side effects and secondary cancers later in life.

Now, the field is changing. Advances in genomics are enabling researchers to understand more and more about the various types of children's cancer – from how they begin at the cellular level to what impact specific therapeutic agents have. Such understanding is expected to lead quickly to new, targeted treatments, if funding is available.

To help us define and launch a new scientific vision, CureSearch convened a Scientific Advisory Council featuring some of the brightest and most innovative thinkers in the cancer research field. Together, this venerable group has set a strong vision for how CureSearch might stand at the intersection of medical, scientific, and commercial sectors to bring patients to the forefront as we solve for a cure. In partnership, we have articulated the following scientific vision:

CureSearch will accelerate the cure for children's cancer by driving innovation, eliminating research barriers, and solving the field's most intractable problems.

CureSearch will continue to fund collaborative clinical trials so that children in treatment today have access to the latest medicines at hospitals close to home.

Ultimately, CureSearch hopes to change the odds for those children who are most at risk.

 

How did I became familiar with CureSearch?

Cure search is currently funding the clinical trial for my sons cancer treatment protocol. In a previous post I spoke of my son, Rocco's, diagnosis of leukemia. What I didn't talk about, was that we opted to be part of a clinical trial.  When all the tests were in 30 days after diagnosis, we met with his doctor to go over his treatment and options. It was determined that Rocco was low-risk ALL. Woo-hoo!! It felt weird to celebrate that diagnosis, but trust me it was worth celebrating.  Rocco was the first low risk patient they have had in several years so it was happy moment for the staff as well! Rocco, my husband and I sat down with Dr. Elliott and Nurse Sue to go over the options. First, Dr. Elliott when over the standard treatment. Up to this point, I had processed the diagnosis, surgery for his port, transfusions, and all other appointments very well. After the explanation of the standard protocol, my head was reeling and my brain wanted to shut down.  Then, she went over the low-risk protocol for the new clinical trial. The difference was like being handed a book and a pamphlet.  There were so many medications involved in the standard protocol that I could not wrap my brain around it. Then the clinical trial seemed like it would be so much easier on him that it was a no brainer to decided what we wanted.  We wanted to part of the clinical trial. But wait..... once we made that decision we had to be randomized. Rocco was put into the system and that would decide if he would get the low-risk protocol or the standard protocol.  Thank, God (He heard my prayers)! We got the new low-risk protocol.  It took me 3 days to get that standard protocol out of my head.  That is how overwhelming it was for me.  Because of CureSearch and this clinical trial, Rocco is having a much easier time than I believe he would have otherwise.  That is just my opinion as a mom.

 

My goal in the future is to give back to those who have given to us through this difficult time.  Here are ways you can help CureSearch:

Donate 

Fundraising Events 

Go MOM on Cancer 

Legacy Fund 

Corporate Giving 

Volunteer 

Advocate 

Patient / Family Data Form 

Please feel free to share your story in the comments section so others can see our Warriors and how brave and awesome they are!  And, please, share my blog and spread the awareness.

 

Photos courtesy of: CureSearch.org and facebook.com
Information courtesy of: CureSearch.org

Childhood Cancer Awareness Month

Did you know that September is Childhood Cancer Awareness month? Last September, I saw the posts and pictures on Facebook and even made one of those pictures my profile picture for a few weeks. Little did I know, on September 28, 2012, my 4 year old son would be diagnosed with Acute Lymphoblastic Leukemia (ALL). 


Here is our story: When I picked up Rocco on Monday from preschool, his teacher asked if he was feeling okay. She said he didn't seem himself. I figured it was fall allergies. When I got him into the van, I felt his head and he felt warm. He fell asleep a few minutes in to our 20 minute drive. I carried my sleepy boy into the house and took his temperature. It was 99.9 degrees, so I wasn't too worried. The fever continued through Tuesday evening. I kept him home on Wednesday, due to the 24 hour fever rule at school. Thursday the fever returned with some serious sweating. By Friday, at 2 in the morning his fever spiked at 103.5° and he complained that his neck and back hurt. I gave him the last of our children's ibuprofen and gave him a luke warm bath. That morning I got my daughter all dressed up for her school pictures and on the bus. I then got myself cleaned up and waited for Rocco to wake up. We were at the urgent care by 10am. When they called us back and took his vitals, his temperature was 105.6°!!! My heart stopped and my eyes filled with tears. They immediately found us some more ibuprofen. In the back of my head, I was thinking he had meningitis because of the soreness in his neck and back. When the doctor came in, I expressed my concerns. His only other symptom the whole week was a runny nose and that was more of a watery runny nose.  She checked him over, and could not find anything wrong with him. She left to print a prescription for antibiotics. When she returned, she said something isn't sitting right with her. She wanted to do blood work. So, I took Rocco down the hall to the lab to have blood drawn, then back to the exam room to wait for the results. About 40 minutes later, the doctor walked into the room with the lab results. She informed me that his hemoglobin and white blood cell counts were really low. She had already called ahead to Bronson Children's Hospital where we were to report to the ER to be admitted. Some how, I knew right then what we were facing. I started making calls. First to my husband, then to my friend, Erin, who without hesitation said she would get my daughter after school. Once I arrived at the ER things seemed to move quickly. Another blood test to confirm the results they were faxed. I sat waiting for my husband, when the ER doctor came back in.  He was young and I know this was the first time he ever had to tell a parent their child had cancer because he just blurted, "We are looking at some kind of blood cancer".  Poor guy! I think he expected me to become hysterical. Nope. I had to learn how to breathe again first, then figure out how to tell my husband when he arrived. In a very timely manor, my son was moved to the 3rd floor to the children's hospital. By 5pm, Dr. Elliott (Love her!!) from the Children's Hematology Oncology Clinic was meeting with us to tell us Rocco had leukemia, but needed more tests to confirm what type and his risk factor.  She also informed us what the next week would entail.  Now we had to tell our family.  Not an easy task.

Rocco, an hour after his port surgery

For more of Rocco's story visit: http://www.caringbridge.org/visit/roccobarkoff

Rocco's final diagnosis was ALL(acute lymphoblastic leukemia) low risk. Basically, if you're going to be diagnosed with leukemia, this was the best case scenario! He will complete his treatment April 1, 2015!! Through it all his has kept a good attitude and managed to capture a few hearts up on the 3rd floor!

This is just our story! We have met others who have had a much harder time than Rocco and a few who received their Warrior Wings.

There are so many ways that you can help our Warriors in this war on childhood cancer. Throughout the month, I will be sharing with you organizations that have made or are making a difference in our lives as we face this dreadful disease and how you can make a difference by supporting them. Here are some facts for you to ponder, keeping in mind that that it is impossible to measure the impact this disease has on its victims and their families.





• Cancer is the leading cause of death by disease in children and adolescents in the United States. (Source: National Cancer Institute)

• Each year in the United States, approximately 13,500 children and adolescents 18 and under are diagnosed with cancer, that’s more than a classroom of kids a day. (Sources: Center for Disease Control and Children’s Oncology Group)

• One out of every 300 males and one out of every 333 females in America will develop cancer before their 20th birthday. (Source: American Society of Clinical Oncology)

•More than 40,000 children undergo treatment for cancer each year. (Source: CureSearch)

• Approximately 20 percent of all children with cancer will die for their disease, a secondary cancer,  or complications from treatment. (National Cancer Institute)

• The causes of most pediatric cancers remain a mystery and cannot be prevented. (American Cancer Society)

• Childhood cancer does not discriminate, sparing no ethnic group, socio-economic class or geographic region. (Source: Centers for Disease Control data)

• About one in 500 young adults is a childhood cancer survivor. Nearly 2/3  of the survivors later experience significant and chronic medical problems or develop secondary cancers as adults that result from the  treatment of their original cancer. (Source: UCSF Benioff Children’s Hospital)

•  Incidence of invasive pediatric cancers is up 29% in the past 20 years. (Source: National Cancer Institute)

• In 20 years the FDA has initially approved only one drug for any childhood cancer. (Source: Kids V. Cancer)

•The average age of death for a child with cancer is 8, causing a childhood cancer victim to lose 69 years of expected life years; a significant loss of productivity to society. (Source: Kids V. Cancer)

•Childhood cancer survivors are at significant risk for secondary cancers later in life. (Source: National Cancer Institute)

•Cancer treatments can affect a child’s growth, fertility, and endocrine system. Child survivors may be permanently immunologically suppressed. (Source: National Cancer Institute)

•Radiation to a child’s brain can significantly damage cognitive function, or if radiation is given at a very young age, limiting the ability to read, do basic math, tell time or even talk. (Source: National Cancer Institute)

•Physical and neurocognitive disabilities resulting from treatment may prevent childhood cancer survivors from fully participating in school, social activities and eventually work, which can cause depression and feelings of isolation. (Source: National Cancer Institute)

Pictures Courtesy of: TheTruth365.org, facebook.com
Facts Courtesy of: TheTruth365.org