Thursday, September 6, 2012


This month is all about spreading MUCH NEEDED awareness for children with cancer.  I saw something on facebook that said...

"So you wanna know why if your kid doesn't have cancer I'd ask you to spread awareness???  Well, at one point my kid didn't have it either!!!"

Nothing will change unless we look the problem in the eye and challenge the powers that be.  Like Dr. Phil says, "You can't change what you don't acknowledge."  Exactly.  Nothing will change if we don't see that there is a problem.  It is a problem when federal funding is so low.  Nearly 4% of funding goes toward pediatric cancer and pediatric cancer isn't just ONE cancer.  There are 12 main types and then many subtypes of each of those.  The majority of the federal funding goes toward breast cancer research.  Just ONE TYPE of adult cancer.  These kids need a fighting chance.  They need their fair share of funding.  These kids are dying before their lives even start.  My son died at age 10.  He could have had a good 70 years left of his life. 

"Curing childhood cancer is the equivalent of curing breast cancer in terms of productive life years saved" ~ Dr. Eugenie Kleinerman - Head, Division of Pediatrics, M. D. Anderson Cancer Center.  

We NEED to be the voice for these kids!  We as parents are passionate about finding a cure for children's cancer even AFTER our own children have passed away from it.  We know all too well what it is like to hear the news that your child has cancer and then some of us get to hear the news that there really is nothing we can do to help save them.  WHAT???  Just go home and wait for my kid to die??  SERIOUSLY???  Yeah... we are angry.  We are hungry for something to be done!  It may be too late for OUR child, but it's not too late for YOUR child... or your grandchild, niece, nephew, friend.  NO ONE is immune from getting cancer.  It used to be rare, but over the years it is getting more and more common, touching kids from every race and socioecomomic background.  You may feel immune when you look away from the problem, but when it strikes... it strikes hard.  Nothing will change if people continue to say "Oh that's so sad.  I don't know what I would do if that happened to MY child."  Well... it CAN happen to YOUR child.  You CAN do something!  Continue to talk about it, raise money for research, inquire after what amount of funds are going to children's cancer research and challenge them to put more toward the children, ask why there are no gold ribbons in the stores, on the boxes in the grocery aisle.  The kids need to have their voice heard or they will just continue to die.  It makes me sick just thinking about it.  Contact your local representatives and ask what they are doing with regards to childhood cancer research.  There are so many ways to raise awareness and do something about it.  Anything is better than just turning away from the problem and counting YOUR blessing.  Reach out and DO something in honor of the kids that have passed or are still fighting.  You CAN do SOMETHING!!!  Our kids deserve better than 4%...

Become aware...
 The following is taken from St. Baldrick's Foundation...


Acute Lymphoblastic Leukemia is the most common type of childhood cancer. It is a cancer of the blood system, starting in the bone marrow and percolating out into the blood. These patients have too many immature white blood cells in their blood and bone marrow. Fully developed lymphocytes fight infection by attacking germs and other harmful bacteria in the body, wherea

s lymphoblasts are harmful.

Central Nervous System (CNS) tumors are cancers of the brain and brain stem. They are the most common solid tumors of childhood and they have the highest mortality rate of the childhood cancers. Types include medulloblastoma, PNET, germ cell tumors, high-grade and low-grade gliomas, ependymoma, astrocytoma and more. (DIPG - Diffuse Intrinsic Pontine GLIOMA)

Clear cell sarcoma of the kidney (CCSK) is a very rare type of kidney tumor. It is not recognizable as different from Wilms tumor before removal of the tumor, but requires a different treatment.

Ewing Sarcoma is a less common form of bone tumor, affecting mostly children ages five and older. These tumors form in the cavity of the bone.

Hodgkin disease is a type of lymphoma, a cancer of the lymph nodes. It affects teens most commonly, but also younger children. The lymph system is present throughout the body and helps fight infections. Hodgkin disease can start almost anywhere and then spread to almost any organ or tissue, including the liver, bone marrow and spleen.

Myeloid leukemias are more rare and difficult to cure than the more common Acute Lymphoblastic Leukemia (ALL). In leukemia, the bone marrow produces large numbers of abnormal blood cells which flood the bloodstream and lymph system and may invade vital organs. The most common cancer of the myeloid cells is Acute Myeloid Leukemia (AML). Others include Juvenile Myelomonocytic Leukemia (JMML), Chronic Myelogenous Leukemia (CML), Acute Promyelocytic Leukemia (APL), and Myelodysplastic Syndromes (MDS). While adults are much more likely to get AML than children, treatment for children with AML is different from that of adults.

Neuroblastoma is a cancer of the sympathetic nervous system, a nerve network outside the brain. Neuroblastoma tumors can grow in the abdomen, neck or pelvis. The average age of diagnosis is 2, and it is rare in children over 10 years old.

Non-Hodgkins Lymphomas are cancers of the cells of the immune system (T and B lymphocytes, natural killer cells). Cells of the immune system are produced in the bone marrow and then travel to all the lymph glands, the thymus gland, areas of the intestinal tract, tonsils, and spleen, so a lymphoma can develop in any of those sites. The four major subtypes of NHL in children are Lymphoblastic, Burkitts, Large B cell, and Anaplastic large cell.

Osteogenic sarcoma (or osteosarcoma) is the most frequently diagnosed type of bone tumor, usually found in adolescents and young adults. Tumors are most often in the large bones of the upper arm (humerus) and the leg (femur and tibia).

Retinoblastoma is a cancer of the retinoblasts, or "baby" cells in the retina, responsible for vision. Retinoblastoma occurs most often in children from birth to age 3. About 40% of these children have the genetic form of the disease; with every cell in the retina susceptible to tumor formation, usually both eyes are affected. The other 60% have the non-genetic type, affecting only one eye. Since removal of the eye can cure most children research is now focused on preserving vision.

Rhabdoid tumor of the kidney is a very rare type of kidney tumor, and rhabdoid tumors can occur in other places of the body, as well. Researchers have found a specific gene mutation that leads to rhabdoid tumors.

Soft tissue sarcomas can be found anywhere in the body. Rhabdomyosarcoma is a tumor that arises in the muscle cells, and is the most common type in children under age ten. The other soft tissue tumors are more rare and tend to be found in adolescents. They include fibrosarcomas, synovial sarcomas, malignantperipheral nerve tumors, leiomyosarcoma, liposarcoma, and others even more rare. Some soft tissue tumors are similar to those found in adults, while others are very unique to children.

Wilms Tumor accounts for about 90% of kidney tumors in children. About 95% of children with this tumor have a "favorable histology" (better cure rate with less treatment) as determined by the pattern the pathologist sees in the tumor cells. The other 5% have anaplastic Wilms tumor, which is much more resistant to treatment.

Other Rare Childhood Cancers There are many types that are so rare it is difficult to do research on them. However, "rare" is a relative term, as these account for about 15% of childhood cancers, jumping to 30% if adolescents are included. Rare childhood cancers include germ cell tumors, liver tumors (hepatoblastoma and hepatocellular carcinoma), adrenocortoco carcinoma, colon cancer, melanoma, nasalpharangyal cancer, thyroid tumors and others."


Bobbi said...

A day never goes by that I do not think of your sweet boy.
Oliver is the reason I'm standing beside everybody bringing awareness to childhood cancer.
I will always remember Ollie Stacey. Always!
Hugz to you and your sweet family. And as always hugz to my favorite HERO in the whole world, your son, Oliver <3

Anonymous said...

What an amazing person you are. Your words are powerful and touching. I am related to Rachel who you have listed with DIPG. I am sorry for your loss. I found your blog full of great information as I have tried to find out what DIPG is and what it does.