Archive for JUST FOR PEDIATRIC PATIENTS

Fight Cancer & WIN! With This Kick-Ass Cancer Fighting Video Game

 

Any oncologist or parent will tell you that getting young cancer patients (that includes children, teenagers and even young adults) to stick to their treatment regimens and take their medications when and how they have been prescribed is no easy task.  To help encourage treatment adherence (which improves outcomes and saves lives!), researchers at HopeLab created  Re-Mission2, a series of six very cool, FREE video games that are super fun to play, a tad bit addicting ;-) AND help it’s players beat a diagnosis of cancer.  

 

Here’s how it works:  

Re-Mission2 gives players a better understanding of their disease and how their bodies benefit from treatments that can be inconvenient, unpleasant or even debilitating at times. Research studies have shown these games not only encourage treatment adherence, but they also give players a much needed sense of power and control*.

 

Each game puts players inside the human body to fight cancer with an arsenal of weapons and super-powers, like chemotherapy, radiation, targeted cancer drugs, antibiotics and the body’s natural defenses. The game play parallels real-world strategies used to successfully destroy cancer and win.  A-M-A-Z-I-N-G!

Download Re-Mission2 Today for FREE!

Simply click HERE to access all six Re-Mission2 games online or download Nanobot’s Revenge mobile app from iTunes  or Google Play.  And let the games begin!

 
 
P.S.  Major kudos to Cigna Healthcare and the Childhood Leukemia Foundation Keeping Kids Connected  program for providing free iPads preloaded with  Re-Mission 2: Nanobot’s Revenge  to hospital centers throughout the country. 
 
*For more information on the above mentioned research studies, see
Hope Lab Research: Re-Mission Outcomes Study and Re-Mission Attitude Studies in the Brain

Adult Survivors of Pediatric Cancer: Get the 411 on Late Effects of Cancer Treatments

 

Thanks to advances in early detection and better treatment regimens, survivors of childhood cancers often go on to live full and productive lives.  However, the same treatments that cure cancer can also put survivors at risk for future medical problems.  Such health problems, known as “late effects“, can occur months or years or even decades after successful treatment has ended.   

FACT:  In a large study of adult survivors of childhood cancer, researchers have found that more than 95% suffered from a chronic health condition by the age of 45, including pulmonary, hearing, cardiac and other problems related either to their cancer or the cancer treatment.

FACT:  The chances of having late effects increases over time so the older you get, the more likely you are to experience health problems.  Risk factors vary depending type of cancer originally treated, location & size of tumor(s), treatment regimens utilized as well as other patient-related factors.

FACT:  Survivors need proactive, clinical health screenings and ongoing, specialized follow up care. Regular follow-up by health professionals who are experts in finding and treating late effects is key.  The exams should be done by a health professional who is both familiar with the survivor’s risk for late effects and can recognize the early signs of late effects.

 

If you are an adult survivor of pediatric cancer, take a look at these RESOURCES that focus on late effects of cancer treatments:  

* Survivors Taking Action & Responsibility (STAR) program at the Lurie Comprehensive Cancer Center of Northwestern University is a comprehensive long-term follow-up program specifically created for adult survivors of pediatric cancer.   STAR is one of several programs in the country to offer this specialized service.  Here, annual check ups are tailored to each patient and may include a heart ultrasound, a battery of blood tests, a mammogram, a chest MRI, a session with a counselor as well as many other diagnostic tools.

I also LOVE their GET EMPOWERED: A video education series for childhood cancer patients and survivors.  Topics include the impact of childhood cancer on adult survivors, making the transition to adult health care, cardiac risk factors, fertility, finding a “new normal” and navigating the emotional side of survivorship.

*  Another great source of information is The Children’s Oncology Group’s Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers.  Talk to your doctor(s) about these guidelines.

 

*  Beyond The Cure has a very informative website that provides detailed information about the late effects of a cancer diagnosis and treatment involving all aspects of survivors’ lives. To help analyze late effects specific to your diagnosis and treatment, check out their Late Effects Assessment Tool.

*  My Heart Your Hands was created by 2 adult survivors of pediatric cancer.  Their mission is to not only raise awareness of the potential late effects of cancer treatments, but to also equip survivors with information and tools they need to manage their follow up care.  Check out their listing of Late Effects Clinics located throughout the US or listen to founder Stephanie Zimmerman’s story.

 

Remember, the more you know about the possible long-term effects, the better prepared you will be to meet any challenges the future may bring.

If you know of other survivorship resources that focus on late effects of cancer treatment, please post them below.  Knowledge is power.  Let’s share the power!  

 

(sources:  Natl Cancer Institute; The STAR Program; WSJ.com)

Camps for Kids & Families Touched by Cancer

 

Attending one of the many camps created specifically for anyone touched by cancer can be a wonderful way to connect with others who share similar experiences.  While some camps are just for children (or young adults) who have been diagnosed with cancer or have survived a diagnosis of cancer; others are for their siblings; and still others are designed for the entire family to attend.  There are even camps for children who have lost a parent or sibling to cancer.  Creating new friendships, sharing adventures, mastering new skills or simply taking a break from cancer are a few of many benefits these camps can offer.

To find a camp that fits your specific needs, check out these incredible resources that list many different cancer camps.  Most camps have oncology doctors and nurses on staff to  provide medical care to campers when necessary.  Additionally, many of these camps are offered FREE of charge to participants.

Ped-Onc Resource Center which lists camps by state coupled with a short description of each camp.

Cancer.Net also provides a listing of different camp and retreat options for kids and families touched by cancer.

Allen’s Guide offers a listing a camps that specialize in oncology.

Also talk to your oncology nurse or social worker.  They may be able to suggest additional camps and/or retreats that may be beneficial for you.

If you’ve been to a camp that you loved, please comment below.  Knowledge is power… let’s share the power...

Financial Assistance for Families of Children with Brain Tumors

 

The Butterfly Fund (created by The Brain Tumor Foundation for Children) provides financial assistance to needy families of children and young adults with brain and spinal cord tumors.

 

Who qualifies for assistance from The Butterfly Fund?

Families of children and young adults with brain or spinal cord tumors who have an unmet financial need that is a direct result of the child’s brain tumor diagnosis and who are receiving treatment/care at one of the following facilities:

  • All Children’s Hospital – St. Petersburg, FL
  • Arnold Palmer Hospital for Children – Orlando, FL
  • Bi-Lo Children’s Cancer Center – Greenville, SC
  • Blair E. Batson Hospital for Children – Jackson, MS
  • Child Life Institute – West Palm Beach, FL
  • Children’s Health Memorial – Savannah, GA
  • Children’s Healthcare of Atlanta (CHOA) – Atlanta, GA
  • Children’s Hospital – New Orleans, LA
  • Children’s Hospital of Alabama (Birmingham Children’s) – Birmingham, AL
  • Columbus Regional Women & Children’s Center – Columbus, GA
  • Dana-Farber/Children’s Cancer Center – Boston, MA
  • East Tennessee Children’s Hospital – Knoxville, TN
  • Georgia Health Sciences University – Augusta, GA
  • Kentucky Children’s Hospital – Lexington, KY
  • Kids Cancer Foundation – Loxahatchee, FL
  • Medical University of South Carolina Children’s Hospital – Charleston, SC
  • Miami Children’s Hospital – Miami, FL
  • Palmetto Health Children’s Hospital – Columbia, SC
  • Pediatric Oncology Support Team (POST) – West Palm Beach, FL
  • Shands Children’s Hospital @ University of Florida – Gainesville, FL
  • St. Joseph’s Children’s Hospital of Tampa – Tampa, FL
  • T.C. Thompson Children’s Hospital – Chattanooga, TN
  • Vanderbilt Children’s Hospital – Nashville, TN

 

Eligible expenses include, but are not limited to:

  • Assistance with rent or mortgage payments, utility bills, car loan payments, car repairs, miscellaneous household expenses, etc., which a family may be unable to afford due to loss of work at the time of a child’s diagnosis and treatment
  • Items not normally covered by some health insurance plans, such as special medications, long-term or special rehab services, hearing devices, wigs and prosthetic devices, home health services, tutoring, etc.
  • Travel and lodging expenses associated with seeking and/or obtaining treatment at locations outside of the patient’s city or state
  • Funeral expenses

All requests for financial assistance through this program must be made through social worker at any of the medical facilities listed above.  Once a family’s application is completed and signed by appropriate medical personnel, it is submitted to the The Brain Tumor Foundation for Children.  Most applications are approved within 2 -5 business days.  Funds get disbursed directly to the creditor.

Financial Assistance for Families Affected by Pediatric Cancer

A Super Kid with Super Powers!
Image credit: robhainer / 123RF Stock Photo

 

Did you know that 30,000 – 40,000 children are currently undergoing treatment for cancer in the US?  Did you know that even with good insurance coverage, a family can still face out-pocket expenses (not including travel expenses) of $40,000+ per year?  Some parents even have to quit their jobs to care for their child in treatment.  OMG, this is heart breaking on so many levels. 

 

Check out the Isaiah Alonso Foundation (IAF)- a small, volunteer-run organization whose mission is not only to raise awareness for childhood cancer, but to provide much needed financial assistance to families of children with cancer.

 

Here’s the dealio (as my daughter always says)…  

Isaiah Alonso Foundation (IAF) accepts applications from any family who is battling childhood cancer and finding it difficult to meet their financial obligations. Grants up to $750 can be awarded.  Families may apply once per year.

To apply for funding, families must meet the following criteria:

  • Families must be residents of the US.
  • Children must have been diagnosed with cancer before age 19; however IAF can provide grants up until the child turns 21.
  • Although there are no set income requirements to qualify per se, IAF takes everything into consideration on a case by case basis.
  • Verification of a cancer diagnosis from the child’s social worker is required.

To download an application, please click HERE.  If you have questions, please contact the Isaiah Alonso Foundation (IAF) directly via email or via phone (270) 300-5329.

Thank you IAF for all you are doing to help families affected by pediatric cancer! xoxoxo

 

 

 

Financial Assistance for Pediatric Cancer Patients Living in South Carolina

 

If you live in South Carolina and have a child with a diagnosis of cancer, check out Children’s Chance- they help support South Carolina children and their families facing pediatric cancer with non-medical needs.

 

Children’s Chance offers the following programs & types of assistance:

*  Family Support Funds Program helps pay for non-medical bills such as mortgage/rent payments, electric bills, car insurance, car repairs, and other non-medical, everyday expenses.  All funds are paid directly to vendors.

*  Angel Funds Program helps families with out-of pocket expenses such as gas, food and telephone calls. These funds are especially helpful to families who must spend time in the hospital and away from the comforts of their home.

School Supply Bash provides children with cancer and their siblings free school supplies.

Counseling Program provides funding for counseling fees for any member of family who has been touched by pediatric cancer.   Services are available while the child is in treatment, after treatment ends, and for those families whose child loses their battle with cancer.

* Children’s Chance also hosts An Evening with the Gamecocks“, a very special evening where children and their families can dine and hang out with the University of South Carolina’s football team and coaches.

To qualify for assistance from Children’s Chance:

  • Family must be a resident of South Carolina
  • Child with cancer must be between the ages of 0-18 years
  • Child with cancer must be either currently in treatment or less than one year off treatment

To find out how more information on Children’s Chance, please contact their office at (803) 254-5996 or via email @ childrenschance@childrenschance.org.  

Financial Assistance for Pediatric Sarcoma Patients from Dani’s Foundation

Dani’s Foundation not only funds research in hopes of finding the cause of and a cure for pediatric sarcoma, but they can also lend financial assistance to those patients & families who are financially struggling due to a sarcoma diagnosis & treatment.

 

Here’s the dealio (as my daughter always says)… Grant applicants must meet the following criteria:

  • Patients must have a pediatric sarcoma cancer diagnosis and be receiving active cancer treatment and/or receiving one year post-treatment care.
  • Applicants must be 26 years or younger.
  • Patients/Parent(s)/Legal Guardian of Grant applicants must enclose copy of identification.
  • Grant applicants may submit one request per twelve month period, maximum of two lifetime awards.  Grants typically range from $250 -$500.

To learn more about Dani’s Foundation grant process and apply, click HERE.

Alex’s Lemonade Stand Helps Pay for Travel Expenses for Pediatric Cancer Patients

Thanks to a generous grant from TD Bank, Alex’s  Lemonade Stand Foundation (an incredible organization that funds 250 research projects a year in hopes of finding a cure for pediatric cancer) can now help defray travel-related expenses for pediatric cancer patients.  Specific areas of assistance include:  airline tickets and gas cards; hotels & philanthropic housing; food vouchers from the hospital’s on-site cafeteria and local area restaurants.  AMAZING!

 

Here’s the dealio (as my daughter always says)… 

Currently, grants up to $2,000 can be awarded to families of pediatric cancer patients who meet the following criteria:

  1. The patient must be 18 years old or younger.
  2. The patient must be diagnosed with cancer.
  3. The patient’s annual family income should not be greater than $75,000.
  4. The patient must currently be receiving treatment for childhood cancer.
  5. Travel must be associated with one of the following cancer treatment facilities:
  • ALL Children’s Hospital (St. Petersburg, FL)
  • Ann & Robert H. Lurie Children’s Hospital of Chicago – IL
  • Arkansas Children’s Hospital (Little Rock, AR)
  • Children’s Healthcare of Atlanta (GA)
  • Children’s Hospital of Denver (CO)
  • Children’s Hospital of Los Angeles (CA)
  • Children’s Hospital of Orange County (CA)
  • Children’s Hospital of Philadelphia (PA)
  • Children’s Hospital of San Francisco (CA)
  • Children’s Hospital of Seattle (WA)
  • Children’s Mercy Hospital (Kansas City, MO)
  • Cincinnati Children’s Hospital Medical Center (OH)
  • Connecticut Children’s Medical Center (Hartford, CT)
  • Dana-Farber Cancer Institute (Boston, MA)
  • Doernbecher Children’s Hospital (Portland, OR)
  • Hospital for Sick Children (Toronto, Canada)
  • Johns Hopkins Hospital (Baltimore, MD)
  • Kosair Children’s Hospital (Louisville, KY)
  • MD Anderson Cancer Center (Houston, TX)
  • Morgan Stanley Children’s Hospital of NY-Presbyterian (New York, NY)
  • Nemours Children’s Clinic/Wolfson Children’s Hospital (Jacksonville, FL)
  • NYU Medical Center (New York, NY)
  • Rainbow Babies & Children’s Hospital (Cleveland, OH)
  • St. Louis Children’s Hospital (MO)
  • Texas Children’s Cancer Center (Houston, TX)
  • Vanderbilt University Medical Center (Nashville, TN)

Applications are accepted through “certified representatives” (ie. social worker, nurse, doctor, resource specialist, etc), who will apply on the family’s behalf.  Alex’s Lemonade Stand Foundation attempts to respond to all requests within 1-2 business days.  And oh, by the way, monies are provided up front, rather than requiring families to apply and wait for reimbursement.  Again, AMAZING!  Got questions, contact Shirley at 610-649-3034 or via e-mail Shirley@AlexsLemonade.org.

 

Chemo Duck Helps Kids Get Through Chemotherapy

I think the only thing more frightening than hearing the words “You have cancer” is hearing that your child (or any child for that matter) has cancer.  To help parents prepare their children for chemotherapy treatments and eliminate fear of the unknown, Gabe’s Chemo Duck Program was born. (BTW, this program was created by the parent of a pediatric cancer survivor.)

 

Chemo Duck is an adorable, stuffed yellow duck dressed in blue hospital scrubs with a bandana around its head, a chemotherapy port on its chest and an immobilizer on its arm.  This soft, cuddly pal that helps children role play while learning what to expect during cancer treatment.  Gabe’s Chemo Duck Program also comes with a bilingual book & DVD detailing how to best use Chemo Duck as a teaching tool as well as tips to help parents navigate throughout the first weeks of treatment.

 

Many hospitals and pediatric cancer centers use the Chemo Duck Program for their young patients and families.  See below.  And if your children’s hospital is not listed, talk to them about this program.

Alabama
Children’s Alabama

Arizona
Diamond Children’s Hospital – Tuscon
Phoenix Children’s Hospital

California
City of Hope
Lucile Packard Children’s Hospital
Kaiser Permanente
Santa Barbra Cottage Hospital

Colorado
Rocky Mountain Children’s Health Foundation – Denver

Connecticut

Connecticut Children’s Medical Center
Yale-New Haven Children’s Hospital

Georgia
Aflac Cancer Center
Backus Children’s Hospital
MCGHealth Children’s Medical Center

Florida
Baptist Children’s Hospital – Miami
Childen’s Hospital of SW Florida
Chris Evert Children’s Hospital in Fort Lauderdale
Holtz Children’s Hospital at the University of Miami
Nemours Children’s Clinic in Jacksonville
Nemours Children’s Clinic in Orlando
Nemours Children’s Clinic in Pensacola
Pediatric Oncology Support Team at Dana Farber Cancer Institute
Shands Children’s Hospital at University of Florida
The Children’s Hospital of Southwest Florida
St. Josephs Children’s Hospital
Wolfson Children’s Hospital – Jacksonville

Hawaii
Kapiolani Medical Center for Women & Children
Tripler Army Medical Center

Idaho
St Luke’s Children’s – Boise

Illinois
Children’s Hospital of Illinois – Peoria
Comer Children’s Hospital – University of Chicago
Lutheran General Children’s Hospital
SIU School of Medicine – Springville
University of Illinois Medical Center – Chicago

Indiana
Riley Hospital for Children
Peyton Manning Children’s Hospital
Memorial Hospital – South Bend
Lutheran Children’s Hospital

Iowa
The University of Iowa Children’s Hospital
The Heart Connection – Children’s Cancer Programs
Blank Children’s Hospital

Kentucky
Kentucky Children’s Hospital – Lexington
Kosair Children’s Hospital – Louisville

Louisana
Children’s Hospital of New Orleans
Kid’s Specialty Center at Women’s & Children’s Hospital

Maine
The Barbara Bush Children’s Hospital
Eastern Maine Medical Center

Maryland
Samuelson Children’s Hospital at Sinai
University of Maryland Hospital for Children
John Hopkins Hospital

Massachusetts
Mass General Hospital – Children Cancer Center
Dana-Farber Institute-Jimmy Fund Clinic
UMass Memorial Children’s Medical Center

Michigan
Beaumont Children’s Hospital – Royal Oak
Bronson Children’s Hospital – Kalamazooo
Children’s Hospital of Michigan
C.S. Mott Children’s Hospital – Ann Arbor
Helen Devos Children’s Hospital
Hurley Medical Center – Flint

Missouri
Cardinal Glennon Children’s Foundation – St Louis
Children’s Mercy Hospital

Minnesota
Children’s Hospital and Clinics
Mayo Eugenio Litto Children’s Hospital
University of Minnesota Amplatz Children’s Hospital

Nevada
Children’s Specialty Center – Las Vegas

New Jersey
Tomorrows Children’s Institute
Goryeb Children’s Hospital
Saint Joseph’s Children’s Hospital
St. Peter’s University Hospital
Newark Beth Israel Medical Center

New York
Albany Medical College
Children’s Hospital of Montefiore
Cohen Children’s Medical Center New Hyde Park
Hassenfeld Children’s Center
Kravis Children’s Hospital at Mount Sinai Medical Center
Maimonides Infants and Children’s Hospital of Brooklyn
Vassar Medical Center
StonyBrook Medical Center

North Carolina
North Carolina Children’s Hospital
Presbyterian Blume Pediatric Hematology / Oncology Clinic
Brenner Children’s Hospital
Duke Children’s Hospital
Children’s Hospital of Eastern North Carolina
Mission Children’s Hospital

Ohio
Children’s Medical Center of Dayton
Cleveland Clinic Children’s Hospital
Nationwide Children’s Hospital

Oklahoma
The Children’s Hospital at St Francis

Oregon
The Children’s Hospital at Legacy Emanuel

Pennsylvania
Children’s Hospital of Pittsburgh
Geisinger
Children’s Hospital of Philadelphia
Lehigh Valley
St. Christopher’s
Penn State Hershey Children’s Hospital

South Carolina
Palmetto Health Children’s Hospital
Children’s Hospital of GHSUMC

South Dakota
Sanford Children’s Hospital in Sioux Falls

Tennessee
Children’s Hospital at Erlanger
East Tennessee Children’s Hospital
Monroe Carell Jr Children’s Hospital at Vanderbilt

Texas
M.D. Anderson Cancer Center
Children’s Blood and Cancer Center
Medical City Children’s
Driscoll Children’s Hospital

Utah
Primary Children’s Medical Center – Salt Lake City

Vermont
Vermont Children’s Hospital

Virginia
Inova Fairfax Hospital for Children
University of Virginia Health System
Naval Medical Center
Carilion Clinic Children’s Hospital
Virginia Commonwealth University Health Systems

West Virginia
Ruby Memorial Hospital

Washington
Madigan Army Medical Center
Mary Bridge Children’s Foundation – Tacoma
Sacred Heart Children’s Hospital – Spokane
Seattle Children’s Hospital

Wisconsin
American Family Children’s Hospital
Saint Joseph’s Children’s Hospital
St. Vincent Hospital
Children’s Hospital of Wisconsin

Washington, DC
Children’s National Medical Center
Georgetown University Hospital
Walter Reed Army Medical Center

Pennies from Heaven is 1 Way to Get Financial Assistance

Find a penny. Pick it up. All day long you’ll have good luck.

My amazing sister-in-law Sue (whom I absolutely adore, can you tell?) told me about an equally amazing organization called Pennies from Heaven, Caleb’s Foundation.  If you are a parent caring for a sick child and need help making ends meet, Pennies from Heaven may be your answer….

Here’s the dealio (as my daughter always says)...

Pennies from Heaven provides financial assistance for families in need so they don’t have to leave their sick child’s bedside.  They will do whatever they can to help- whether that means covering a rent or mortgage payment, electric or medical bill, or even groceries for the week.

In order to qualify for assistance, a child must be “medically involved” which means currently or recently hospitalized or receiving ongoing medical treatment at a medical facility or at home through specialized nursing care.

If a child is a patient at Children’s Hospital of Philadelphia, please contact the social worker or health care professional assigned to that child. He or she will have access to a Pennies From Heaven “Patient Information Form” that must be filled out to process a request.

If a child is receiving care from a hospital or medical facility other than Children’s Hospital Of Philadelphia, please email Pennies from Heaven directly at calebspennies@aol.com and they will send you the necessary information.

Since February, 2010, Pennies from Heaven has raised about $80,000 and helped over 100 families.  Now that really is amazing!