| In This Issue... |
|
Headlines
Wilms' Tumor
Cancers In Children
Testimonials
Types of Childhood Cancers
|
| Young People With Cancer:
A Handbook For Parents |
|
Young People with Cancer gives you information on all stages of your child's illness. It tells you what to expect and suggests ways to prepare for different situations. It can guide you to become your child's best advocate or supporter. You know your child better than anyone else - your child's personality, how your child copes with unknown situations and fear, what makes your child laugh or cry. You know what works best - how to humor and talk to your child and how to help your child relax. Try to remember that you are a key part of your child's treatment. This booklet was reviewed by health professionals and, most important, by parents of children with cancer. Although this booklet does not tell you everything about cancer in children, it is a start, and it directs you to other sources of information. You may want to share this booklet with friends and relatives who want to learn more about what you and your child are going through. Use this booklet to learn:
-
what cancer is and what the different kinds of cancer are
-
how to find the best treatment
-
about cancer treatment and side effects
-
about common medical procedures
-
how to talk to your child about cancer
-
how to handle your own feelings, your child's feelings, and the feelings of others
-
about common health issues
-
what the future holds and
-
where to get more information.
Because this booklet contains so much information, it may be useful to refer to the different sections as you need them. You can use the Table of Contents to find the sections of most interest to you. Words that you may not be familiar with are underlined the first time they appear. You can click on these words to see their definitions. The definitions are taken from the National Cancer Institute's Cancer.gov dictionary. More children than ever are surviving childhood cancer. Over the last 30 years, survival into adulthood increased from 30 percent to 80 percent. There are new and better drugs and methods to help children deal with the side effects of treatment. And children who have had cancer now have a better quality of life throughout childhood and into adulthood; fewer long-term ill effects follow the treatment. Yet, in spite of all this good news, cancer is still a serious disease. You are not alone in facing your fears; help is available. A treatment team - doctors, radiation therapists, rehabilitation specialists, dietitians, oncology nurses, and social workers, among others - can help you and your child deal with the disease. They will also help ensure that your child gets the best treatment available with as few ill effects as possible. Resources such as this booklet provide information on childhood cancers and their treatment, suggestions on how to make your child as comfortable and as pain-free as possible, and advice on how to make time for family and friends. To read more, click here. |
| What Are the Types of Childhood Cancers? |
|
Leukemia
Leukemias are the most common childhood cancers. They account for about 33% of all childhood cancers. Acute lymphocytic leukemia (ALL) and acute myelogenous leukemia (AML) are the most common types of leukemia in children. Leukemia may be cause bone and joint pain, weakness, bleeding, fever, weight loss, and other symptoms.
Brain and nervous system cancers
Brain and other nervous system cancers are the second most common cancers in children, making up about 21% of childhood cancers. Most brain cancers of children involve the cerebellum or brain stem. In early stages they can cause headaches, nausea, vomiting, blurred or double vision, dizziness, and trouble walking or handling objects. Adults are more likely to develop cancers in different parts of the brain--usually the cerebral hemispheres. Spinal cord tumors are less common than brain tumors in both children and adults.
Neuroblastoma
Neuroblastoma is the most common solid tumor (besides brain tumors) in children. It is most often found during the first year of life. This tumor can start anywhere but usually occurs in the belly (abdomen) and is noticed as swelling. It can also cause bone pain and fever. It accounts for about 7% of childhood cancers.
Wilms tumor
Wilms tumor is a cancer that may affect one or both kidneys. It is most often found in children between 2 and 3 years old, and can show up as a swelling or lump in the belly (abdomen). Sometimes the child may have other symptoms, such as fever, pain, or poor appetite. Wilms tumor accounts for about 5% of childhood cancers.
Lymphoma
Non-Hodgkin lymphoma and Hodgkin lymphoma (sometimes called Hodgkin disease, Hodgkin's disease, or Hodgkin's lymphoma), are cancers that start in lymph tissues, such as the tonsils, lymph nodes, and thymus. These cancers may spread to bone marrow and other organs, which can cause different symptoms depending on where it is growing. They also can cause fever, sweats, weakness, and swollen lymph nodes in the neck, armpit, or groin.
Hodgkin lymphoma can occur in both children and adults, and accounts for about 4% of childhood cancers. It is more common, though, in 2 age groups: early adulthood (age 15 to 40, usually 25 to 30) and late adulthood (after age 55). Hodgkin lymphoma is rare in children younger than 5 years of age. About 10% to 15% of cases are diagnosed in children 16 years of age and younger.
Non-Hodgkin Lymphoma makes up a little more than 4% of childhood cancers, and can cause symptoms similar to Hodgkin lymphoma. It can also cause other symptoms depending on where it starts in the body.
Rhabdomyosarcoma
Rhabdomyosarcoma is the most common soft tissue sarcoma in children. It makes up a little more than 3% of childhood cancers. This tumor starts in the same embryonic cells that develop into striated (voluntary) muscles. It can happen in the head and neck, groin, abdomen, pelvis, arms and legs. It may cause pain, swelling (a lump), or both.
Retinoblastoma
Retinoblastoma is a cancer of the eye. It is rare, accounting for less than 3% of childhood cancers and about 5% of childhood blindness. It usually occurs in children under the age of 4.
Bone cancers
Primary bone cancers (cancers that start in the bones) occur most often in children and adolescents. Primary bone cancer is different from metastatic bone cancer, which is cancer that has spread from another site to the bone. Metastatic bone cancer is named for the place the cancer came from. For instance, it might be described as prostate cancer that has spread (metastasized) to the bone, or breast cancer with bone metastasis.
Metastatic bone cancer is more common than primary bone cancer because many types of cancer can spread to the bone. Two types of primary bone cancers occur in children:
Osteosarcoma is uncommon, accounting for almost 3% of all new childhood cancer cases in the United States. It often causes no pain or symptoms until swelling starts, but sometimes there is worsening bone pain.
Ewing sarcoma is a less common primary bone cancer which can cause bone pain. It occurs mostly in children and adolescents. It accounts for a little more than 1% of childhood cancers.
American Cancer Society |
|
|
|
Wilms' Tumor |
|
|
Wilms' Tumor is also called Nephroblastoma.
Wilms' Tumor is a rare type of kidney cancer that affects children. It causes a tumor on one or both kidneys. Having certain genetic conditions or birth defects can increase the risk of developing Wilms' Tumor. Children who are at risk should be screened for Wilms' Tumor every three months until they turn eight.
Possible signs of a kidney tumor include a lump in the abdomen and blood in the urine. The tumor is usually diagnosed and removed during surgery. Other treatments include chemotherapy, radiation. Biologic therapy, or immunotherapy, boosts your body's own ability to fight cancer. Most children with Wilms' Tumor can be cured.
|
|
Testimonials
My family and I wish to extend our appreciation to you. Our son, Seth, was recently enrolled and we received our first check. We are very grateful. Seth is 11 years old and has an extremely rare cancer. There have only been ten other children in history in the USA and UK with his specific disease. It's called adult peripheral T-cell lymphoma. It is very aggressive and difficult to treat. Seth has been in treatment since November 2007. Like many children with cancer, Seth has had several surgeries and began his cancer journey with six weeks in PICU. He nearly didn't survive. Fortunately, his tumor responded to chemotherapy and radiation therapy. Soon he will undergo a bone marrow transplant with his 7 year old brother as donor.
 We live in rural Arizona and have had to travel for each and every one of Seth's treatments and related complications. Initially, Seth was treated in Las Vegas which is nearly a three hour drive from home. More recently his care has been transferred to Phoenix which is 240 miles from home. We have driven nearly 10,000 miles since diagnosis. Many trips have been emergent, causing us to drive across the desert in the middle of the night. My husband has only been able to work sporadically since November. I am on an unpaid leave of absence. The money you send each month helps us pay for the gas needed to travel for Seth's treatments. Up to this point any fundraiser we've had has been to raise and donate money for cancer charities. We have never asked for help before and haven't accepted until now. We are thankful that you are here for us. He's a bright and wonderful boy. Thank you for helping our family.
Sincerely,
Jill- mom
Jeff- dad
Update on Seth:
Seth is currently 6 months post bone marrow transplant. His donor was his 8
year old brother, Mason, also pictured. Mason was very brave and is no
doubt a hero. He said donation day was "the hardest day of my life". Seth
is in complete remission and is still recovering from his transplant, a
process that takes 9-18 months. He is doing very well and though unable to
interact with people due to his compromised immune system, Seth has been
able to keep up his school work at home and stay with his 6th grade class.
After spending the summer and fall in Phoenix in isolation, we are happy to
be home. We still travel to Phoenix twice monthy, a 500 mile round trip
from our home, for testing. Thank you Children's Cancer Fund of America for
helping us defray the great expense of caring for a very ill child. We
thank all the donors who make the Fund possible.
Dear Staff at the Children's Cancer Fund of America:
I am writing to introduce you to our family. I am John (Dad-44). The rest of our family includes: Pete (4), Emily (10), Matthew (6), Andrea (Mom-37), and Jack (13). Jack is a bright, outgoing, athletic kid with many friends and younger siblings that all look up to him. His athleticism is what led us to be blessed with an early diagnosis of his cancer.
One Saturday in May of this year, he volunteered to assemble the new trampoline we had recently purchased for the kids. After several hours or work and with a little of dad's help, he enjoyed the fruits of his labor and got to spend a good portion of that afternoon jumping on the trampoline (front flips, black flips, etc.) Later that evening he complained of pain in his chest when he breathed deeply. Thinking is was simply a result of his recent arduous acrobatics on the trampoline, we chose not to worry about it at the time and see how he felt the next day. Well, the next evening in church, his chest pain came back, so mom took him to the local emergency room while dad took everyone else home.
The next day, dad left for a business trip to calilfornia and mom got to take a surprise trip to Phoenix Children's Hospital (2 1/2 hours from home) as the x-rays and ct scan done the previous evening at the local E.R. revealed a mass in Jack's chest that required further study by specialists in Phoenix. Well, you can probably imagine the rest. Luckily, the tumor was about the size of an egg and neatly encapsulated just under the chest wall slightly to the left of his sternum. Several hours of surgery and a few inches of rib later, he was tumor free but just on the threshold of the rest of his treatment.
It required several weeks, a team of really smart doctors in both Phoenix and St. Louis and many tests to eventually identify the tumor as an undifferentiated sarcoma. This diagnosis replaces several intermediate "guesses" and eventually dictated 30+ weeks of chemotherapy with treatments about every 10 days to two weeks, depending on Jack's ability to recover adequately in between. We hope to be hone with this regimen by the end of the year, yet face the possibility of additional chemo and/or radiation treatments. Additional related tests and scans have all been negative to date, for which we are immensely thankful.
Upon your receipt of this letter, we will be approximately half way through this 30 weeks of treatment. It has been an eventful first half with surgery to resect the tumor, surgery to install a port-a-cath, surgery to fix the non-working port-a-cath, a couple of trips to the local E.R., one emergency ambulance trip from Flagstaff to Phoenix due to an infection that landed Jack in the PICU for a couple of days, getting a handle on what all the various medications do, and what medications to use to counter-act the ill-effects of the first medications, etc.
Our family lexicon has come to include many new words, concepts and places like "home-schooling," The Ronald McDonald House, hydroxyzine, the hospital cafeteria, oxycodone, PICU, ondanzatron, mouth-care, the beeping I.V. machine, heparin, roommates on the second floor, blood counts, many nurses, many doctors, good I.V. spots and not-so-good I.V. spots, adavan, etc.
In spite of it all, we are extremely lucky and blessed. Mom has a very understanding boss that allows her to continue her full-time work mostly from home. Dad owns a business where his brother, Jack's uncle, is his business partner and thus very understanding and accommodating about the needed time away for frequent trips to Phoenix Children's Hospital, etc. Grandma and Grandpa have been outstanding in their support in helping to care for Jack and his brothers and sister. We have more sincere, standing offers of help, day or night, from family, friends and neighbors (some we didn't even know until now!) than we could possibly take advantage of. We have hood medical insurance and great caregivers that allow for Jack to have come to believe is the best care possible. We realize that many families dealing with cancer don't have the good fortune of all of these positive elements, and we are thankful for our blessings and feel deeply for those who lack them.
Our struggles are coping with the logistics of a relatively large family, treatment facilities that are 2 ½ hours away (especially with $4.00/gallon gas!), a treatment schedule that can change day-to-day based on blood test results, etc., two full-time jobs and the stresses of everyday life that everyone knows well. Our planning is day to day. Every once in a while we can plan almost a week ahead - though those well intentioned plans often go to pieces on day three or so. Yet, the sacrifices our family must make pale in comparison to the rough road that Jack himself must endure, and thus our load is light and our road traveled willingly when his is considered. As much as we'd like to, we can't take on his pain, nausea or fear.
We are continually amazed by the many wonderful groups, organizations and individuals we've encountered in our journey thus far. Thank goodness for all the selfless, generous, caring people in the world of children's cancer, and thank you for considering our family, and Jack especially, with your program.
Sincerely,
John and Family
 |
|
7714 Conner Rd.
Suite 108
Powell, Tn 37849
Phone Number: 1-888-418-6062
The Children's Cancer Fund of America, Inc. is a national 501 c(3) organization dedicated to helping children with cancer and their families by providing financial assistance.
| |
|
