Life is not waiting for the storm to pass. Life’s about learning to dance in the rain.

 

Organizations

Children’s Neuroblastoma Cancer Foundation (CNCF) CNCF is an organization of parents of kids with neuroblastoma. Their purpose is to educate other parents about this disease and then to fund research to cure it. I have been told that parents of neuroblastoma patients are a tight knit group and this organization is one of the reasons why. CNCF holds a parent conference each year where families and doctors come together to discuss the issues of neuroblastoma and how to solve them. Their website has a “Parent Handbook” that gives detailed information on everything you need to know about neuroblastoma. If you need help with anything, you can contact this organization directly. Children’s Neuroblastoma Cancer Foundation (CNCF) 360 W. Schick Rd., Suite 23 #211 Bloomingdale, IL 60108 Phone: (866) 671-2623 Fax: (630) 351-2462 Email: info@cncfhope.org

Website: http://www.cncfhope.org

Hospital Social Workers Each hospital has a group of social workers available for the families. These people can help find the resources needed by a family, whether it is financial or something else. If you need anything outside of medical care at the hospital, ask for the social worker assigned to you.

Ronald McDonald House The Ronald McDonald House is an organization with “houses” near hospitals. These Houses are available for families to stay in while caring for a sick child. The cost is minimal or free if money is an issue. Many local organizations bring in food and gifts for the children. It is a great option when getting treatment away from home or a good place to stay after bone marrow transplant or other long duration treatments. We stayed at two different Ronald McDonald Houses during our journey. One of them was for cancer patients only. We cannot say enough great things about this organization. Ronald McDonald House Charities One Kroc Drive Oak Brook, IL 60523 Phone: (630) 623-7048 Fax: (630) 623-7488

Email: info@rmhc.org

Candlelighters Candlelighters is an organization of parents at the local hospital level. This organization helped us with information and care at the hospital in which Nathan was diagnosed. They supported us with books they published to help with some of the major family concerns, for example other children dealing with a sibling with cancer, how to let the patient attend school, etc. Also the families that were in Candlelighters had a lot of local information on resources available at that hospital. Not all hospitals have a Candlelighters organization, so check where you are.

Livestrong Livestrong is a foundation created to help people and families that are dealing with cancer. Their website has information on different types of cancer, how they can be treated and other resources available to help families find whatever they need. We used them to find an advocacy group to help address concerns with our insurance company. They were very professional and sympathetic to our situation. LIVESTRONG 2201 E. Sixth Street Austin, Texas 78702 Phone: (855) 220-7777

Website: http://www.livestrong.org/

Patient Advocate Foundation Patient Advocate Foundation assisted us with discussing Phase I study insurance coverage for Nathan. Patient Advocate Foundation Headquarters 421 Butler Farm Road Hampton, VA 23666 Phone: (800) 532-5274 Fax: (757) 873-8999 Website: http://www.patientadvocate.org/

Corporate Angel Network Corporate Angel Network is an organization that works with corporations that have commuter jets that fly regularly scheduled commuter flights. The corporation allows patients and their families fly on these jets for treatment. We were able to fly on The Limited’s corporate jet many times to take Nathan to his antibody therapy. There was no cost to us and the crew on the airplane welcomed us with open arms. Nathan was able to visit the cockpit most flights. Corporate Angel Network, Inc. Westchester County Airport One Loop Road White Plains, NY 10604-1215 Phone: (914) 328-1313 Toll Free: (866) 328-1313 Fax: (914) 328-3938

Email: info@corpangelnetwork.org

Project Angel Hugs There are a few organizations out there just to make your child feel better just for a bit. Project Angle Hugs sends hugs to your child through the mail. These hugs come in the form of letters from other kids, cards, post cards, and packages of gifts. They are very thoughtful around most holidays, and they send a package of toys and gifts for your child. They even include presents for your other children, too. Nathan and Kate both squeal whenever they see an Angel Hugs box arrive in the mail. What a glorious few moments as they open it. Project Angel Hugs 307 E. Mill Street, Suite 1, Plymouth, WI  53073 Phone: (920) 892-9138 Fax: (757) 873-8999

Website: http://www.projectangelhugs.com

Special Wish Foundation Special Wish Foundation is one of the many organizations that fulfill the wish of a sick child. The wish can vary from a trip to Disney (like we took) to a play room (for a friend of ours) to a new computer for school. It just depends on the wish of the child and the ability of the organization to complete it. A Special Wish Foundation, Inc. National Headquarters 1250 Memory Lane N – Suite B Columbus, Ohio 43209 Phone: (614) 258-3186 Toll Free: (800) 486-wish Fax: (614) 258-3518 Website: http://www.spwish.org/

Give Kids the World Village (GKTW) Give Kids the World Village is a resort in Orlando for sick children. GKTW works with the children “Wish” organizations to give children a week in the village. Its mission is to fulfill children’s wishes and let them play like a child for a week. The village itself has enough things to do to keep anyone busy for a week. In addition they have tickets available for Disney, Sea World, water parks, alligator farms, air boat rides, etc. Our trip to GKTW is discussed in detail in the previous chapter. After you have been to GKTW for a wish trip, anytime you are in Orlando, you are welcome to go visit for the day. You can use their facilities, have a meal and play. We have been back once since our Wish trip. Give Kids The World Village 210 South Bass Road Kissimmee, FL 34746 Phone: (407) 396-1114 Toll Free: (800) 995-KIDS Fax: (407) 396-1207

Website: http://www.gktw.org/

Neuroblastoma Children’s Cancer Society  is a 501(c)(3) nonprofit organization dedicated to promoting research and providing support to the children (and their families) diagnosed with neuroblastoma.  The organization is dedicated to raising funds for Neuroblastoma research, to change the outcome for all children diagnosed with this disease.

Website: http://www.neuroblastomacancer.org/

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