NB Parent Handbook

1314 Finding Other Families: Listservs and On-line Communities

Editors — Wed, 01 Jul 2009 21:10:00 GMT

Download printable version: 1314 Finding Other Families: Listservs and On-line Communities After our children were diagnosed with neuroblastoma, most of the parent authors of this Handbook felt alone in a way never known before. Family and friends circled...(read more)

1315 Keeping Family and Friends Informed

Editors — Wed, 01 Jul 2009 21:04:00 GMT

Download printable version: 1315 Keeping Family and Friends Informed Along with the whirlwind of emotions and medical demands after your child’s diagnosis, you will probably find yourself deluged with questions, tears, and offers of help from family and...(read more)

0304 Special Issues with Stem Cell Transplants

Editors — Wed, 01 Jul 2009 20:29:00 GMT

Download printable version here: 0304 Special Issues with Stem Cell Transplants st1\:*{behavior:url(#ieooui) } /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0;...(read more)

1308 Chicago/CMH

Editors — Wed, 18 Mar 2009 12:51:00 GMT

Download printer-friendly version: 1308 Travel Guide to CMH Travel Guide: Chicago, IL Children’s Memorial Hospital Children’s Memorial Hospital Address: 2300 Children’s Plaza Chicago, IL 60614 Phone: (773) 880-4000 Website: www.childrensmemorial.org Directions...(read more)

202 Overview of High-Risk Treatment

Editors — Mon, 14 Jul 2008 16:03:00 GMT

Download printer-friendly version: 0202 Overview of High-Risk NB Treatment All treatments for newly diagnosed high-risk NB share many components, but differences in protocols do exist, due to continued efforts to increase survival rates using various...(read more)

1004 Monitoring Response to Treatment

Editors — Sat, 12 Jul 2008 18:11:00 GMT

As treatment progresses, you child will have scans and tests to monitor the response. These charts are just examples to help you keep track of your child's response. You can modify to suit your child's situation. Download PDF version: 1004 Monitoring...(read more)

1201 Turning to End of Life Care

Editors — Sat, 12 Jul 2008 00:16:00 GMT

Download printer-friendly version: 1201 Turning to End of Life Care No parents should ever have to face the end of their child’s life. The mere thought defies the natural order and is unbearable to each of us. Unfortunately, some children do lose the...(read more)

1006 Treatment Summary

Editors — Fri, 11 Jul 2008 18:07:00 GMT

Most institutions provide treatment summaries, but you can also prepare your own and include all follow up tests with various specialties (such as hearing tests, dental work, heart tests, etc.) You can use the summary provided from your hospital to create...(read more)

1005 Daily Record Chart EXCEL

Editors — Fri, 11 Jul 2008 17:33:00 GMT

Download EXCEL WORKBOOK: 1005 Daily Record Chart (Excel) INSTRUCTIONS Daily Chart History and CBC Graphs EXCEL WORKBOOK FILE This Excel workbook has some very useful features. With a running history in your hands when speaking to your child's doctor...(read more)

601 Hearing Loss

Editors — Fri, 11 Jul 2008 03:36:00 GMT

Download printer-friendly version: 0601 Hearing Loss Hearing loss is unfortunately one of the most common adverse side effects of standard treatment for high-risk neuroblastoma. According to recent research, up to 62% of children treated for high-risk...(read more)

1304 Travel Guide to National Institutes of Health (NIH)

Editors — Fri, 11 Jul 2008 03:09:00 GMT

Download printer-friendly version: 1304 Travel Guide to NIH One of the places you may end up taking your child for NB treatment is the National Institutes of Health, or NIH. This is the U.S. government’s National Cancer Institute, and it is located in...(read more)

701 Treating Refractory NB

Editors — Fri, 11 Jul 2008 02:57:00 GMT

Download printer-friendly version: 0701 Treating Refractory NB After just a few months of your child’s treatments, you may finally feel like you are getting the hang of cancer treatment. Then you find out that your child is “refractory”—i.e., one of the...(read more)

801 Dealing with Relapse

Editors — Fri, 11 Jul 2008 01:20:00 GMT

Download printer-friendly version: 0801 Dealing with Relapse The focus of this chapter is on relapse after treatment for high-risk neuroblastoma. As always in the case of NB, the guidance of an experienced doctor you trust is absolutely crucial, especially...(read more)

1305 Travel Guide: New York City/MSK

Editors — Wed, 09 Jul 2008 14:12:00 GMT

Download printer-friendly version: 1305 Travel Guide to New York MSKCC Address: 1275 York Avenue, New York, NY 10065 Website: http://www.mskcc.org/ The prospect of taking your child for cancer treatment to any city other than your hometown is daunting...(read more)

105 U.S. Neuroblastoma Specialists

Editors — Tue, 08 Jul 2008 23:55:00 GMT

Download printer-friendly version: 105 U.S. NB Specialists Listed below are institutions and medical professionals who specialize in the treatment of neuroblastoma. This is not an exhaustive list, and is subject to change. Medical literature searches...(read more)