Pediatric Oncology Handbook

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<ul><li> 1. Welcome, Inside you will find many resources and information that we hope you will find helpful in guiding you through this process of treating your child for cancer. In the Billings Clinic Pediatric Center we provide a family-based plan to treating childhood cancer. The goal of our team approach to treatment is to enhance the emotional and physical well being of children with cancer and their families. As your Pediatric Oncology Social Worker, I will be here to provide you with valuable resources, assist you in navigating the health care system, and provide various social services throughout your childs experience and beyond. Needs may be many and varied for children diagnosed with cancer and their families. Our goal is for you to feel comfortable and to know that the Billings Clinic Pediatric Oncology Team will strive to meet all of your needs in a caring and timely manner. If you have any questions you can reach me at 406-238-2696 or 406-238- 2308. Sincerely, Sarah Blackburn, MS Pediatric Social Worker Billings Clinic Pediatrics Center 1 </li> <li> 2. From one parent to another: The day my daughter was diagnosed with cancer was just like every other day of our life, and yet so totally different. I remember wanting to scream out the window, as I drove down the street watching other people go about their own business, Dont you understand, nothing is the same anymore. My daughter has cancer! It was almost as if I wanted everybody to stop and understand, or at least acknowledge, that my world had just changed dramatically and tragically. We were so very, very scared. There were so many questions! We did not know if we should trust this doctor or find another opinion. Should we whisk her out of this medical nightmare and go make the seeming precious few days we had left a party? Or should we endure it with hopes that we would have a lifetime left to share? We did not even know if chemotherapy was a pill, liquid or a light ray. Most importantly, we did not know if she had a future. So, we did the only thing that helpless and confused parents of new cancer diagnosed patients do. We leaned on our family and friends for support. We learned to ask questions and weigh each answer carefully. Finally, we began to make decisions, one by one, with the best information we had available to us. Ultimately, you will discover, as we did, that there are no clear right or wrong answers for most of what this journey will ask of you. There is only your love for your child and your best effort to become their advocate in their care. Be encouraged, the road seems long, dark and without hope but it is not. Tomorrow will come and it will have more challenges but with every day that passes hope will rise with the sun. Some days, like the sun, it will be slow in shedding its light, but we live in the knowledge that it WILL rise again. Jill Mother of Brittany who was diagnosed at the age of 2 with Acute Lymphocytic Leukemia Billings Clinic Pediatrics Center 2 </li> <li> 3. The Team Dr. Paul Kelker attended Yale University and completed his training at the University of Colorado Medical Center and Denver Childrens Hospital. He joined the staff at Billings Clinic in 1978 where he has been the sole board certified Pediat- ric Oncologist in Montana ever since. Dr. Kelker provides general pediatric care and Brittany, Age 5 specializes in the diagnosis and treatment Acute Lymphocytic Leukemia of children with cancer. He works with the Childrens On- cology Group and pediatric cancer specialists in other cities to find the best treatment for each child, including innovative clinical research trials. Sarah Blackburn, BA, MS, is the Pediatric Oncology Social Worker who joined Pediatrics in 2003. She comes from a varied human ser- vices background of 24 years. Sarah is a member of the Association of Pediatric Oncology Social Workers and sits on the board of the cancer family network For One Another. As the Pediatric Oncology Social Worker she offers these services: !" Assisting the family as they navigate the health care system !" Providing emotional support to the family !" Assisting the family to identify funding resources for: Emily, Age 9 travel, lodging, medical care, daily necessities, wishes Sister to Brittany !" Providing the family with educational resources !" Pairing the family with other families as desired !"Advocacy !"School re-entry services !"Supportive/fun activities !"Discharge planning Billings Clinic Pediatrics Center 3 </li> <li> 4. Mandy Miller, BSN, RN is the Pediatric Nurse and joined the oncology team in 2005. She received her BSN from South Dakota State University and has been car- ing for children on in-patient wards where she developed a special interest in caring for children with cancer. Mandy has been involved with the American Cancer Society Relay for Life and is a vol- unteer for the cancer family network For One Another. Taryn, Age 3 Sister to Brittany YOU We want you to remember that you too are a part of your childs health care team. Your input into his or her treatment is essential in providing us with the information and resources to give your child the best care possible. Remember, you are the expert on your child. Alex, Age 7 Brother to Brittany Billings Clinic Pediatrics Center 4 </li> <li> 5. Important Phone Numbers: Billings Clinic Pediatrics Daytime 406-238-2308 Billings Clinic Pediatrics After hours 406-238-2500 Billings Clinic Pediatric Social Worker 406-238-2696 Dr. Kelker home 406-652-6716 Sarah Blackburn cell 406-690-3414 Billings Clinic Infusion Center 406-238-2540 St Vincent Pediatrics 406-237-7450 Atrium Pharmacy 406-238-2084 Billings Clinic HealthLine 24 hour 406-255-8400 800-252-1246 Denver Childrens Hospital 303-861-8888 800-624-6553 Billings Clinic Pediatrics Center 5 </li> <li> 6. DENVER DIRECTIONS From I-25 and Colfax Avenue 1. From I-25 go east on Colfax 1.5 miles to Lincoln. (The capitol building is at Colfax and Lincoln.) 2. Turn left on Lincoln. Go 4 blocks north to 19th Ave. 3. Turn right on 19th Ave. Go 0.6 miles east to Ogden. 4. The Childrens Hospital Main entrance is straight ahead. 5. To park, turn left onto Ogden, then take the first right turn into the parking garage. From I-70 and Colorado Boulevard 1. From I-70, go south on Colorado Blvd. 2.7 miles to 17th Ave. 2. Turn right onto 17th Ave. 3. Go 1.8 miles west on 17th to Downing. (17th turns into 18th.) 4. Turn right onto Downing. Go one block north to 20th Avenue. 5. Turn left onto 20th. The parking garage is straight ahead on your right. From I-25Downing Street Ramps will be effected by the T-Rex construction project from October 2001 to early 2004. We suggest the following rout from I-25. 1. From I-25, exit on University, go north on University 2.8 miles to Speer Blvd (just past Cherry Creek Shopping Center.) 2. Turn left on Speer Blvd. Go 0.9 miles and turn right on Downing and follow it north. (Downing makes a bend to the left at Colfax.) 3. Turn left onto 20th. The parking garage is straight ahead on your right. Billings Clinic Pediatrics Center 6 </li> <li> 7. Cancer Resources Listed below are Internet resources that will help you in finding more information to enhance your understanding of your childs diagnosis and resources to aid you throughout treatment and beyond. These sites contain up- to-date, accurate information and will link you to other reputable resources as well. Web Sites: Billings Clinic www.billingsclinic.com Denver Childrens Hospital www.thechildrenshospital.org CureSearch www.curesearch.org National Childrens www.nationalchildrenscancersociety.com Cancer Society Starlight Starbright www.slsb.org Foundation Leukemia Lymphoma www.leukemia-lymphoma.org Society Childrens Brain Tumor www.cbtf.org Foundation Cancer Pain Management www.childcancerpain.org In Children Bone Marrow Transplant www.bmtinfonet.org American Cancer Society www.cancer.org National Cancer Institute www.cancer.gov Medical Terminology www.fasthealth.com/dictionary Social Security Insurance www.socialsecurity.gov Beyond the Cure www.beyondthecure.org Teens Living with Cancer www.teenslivingwithcancer.org Super Sibs www.supersibs.org Fund a Cancer Family www.fundacancerfamily.com Foundation Billings Clinic Pediatrics Center 7 </li> <li> 8. What to do in case of an emergency: During office hours Monday through Friday between 8:00 am and 6:00 call the pediatrics number. 406-238-2308 After hours call the main clinic number and ask for the on-call pediatrician. 406-238-2500 When to call and what to expect when your child has a fever: Fever and chills are signs of possible infection. A patient is very vulnerable to infection at specific times during therapy when blood counts are low. White blood cells are the infection fighting cells. Acting promptly when you develop symptoms is very important. If your child has a fever of 101 degrees please call pediatrics during office hours at 406-238-2308 M-F. After hours call Dr. Kelker at home, 406-652-6716, leave a message and wait 15 minutes. If you have not heard back from Dr. Kelker within 15 minutes call the clinic number 406-238-2500 and ask for the on-call pediatrician. Billings Clinic Pedi- atrics shares on call duties with the Childrens Clinic and each pediatrician has a protocol for treating possible neutropenia (a shortage of neutrophils which are the most important type of white blood cell to help fight infection). Should you encounter any problem you can refer the on-call physician to the letter regarding possible neutropenia from Dr. Kelker, which is in the back of your folder. You may be instructed to go either to the Emergency Room (go only to St. Vincent Hospital ER as Billings Clinic does not have an in-patient pediatric ward) or straight to the in-patient pediatric ward on the 4th floor of St. Vincent Hospital (straight off the main elevator). If you are in the emergency room and they are having difficulty accessing your childs central line you may request that a nurse from the pediatric ward be sent for, as they generally have more experience in this procedure. If your child is febrile (has a fever) but has an ANC (absolute neutrophil count) above 500 your child may be treated with antibiotics and released. However, if the ANC is below 500 you should be prepared for your childs admission into the hospital for more intensive antibiotic treatment. Billings Clinic Pediatrics Center 8 </li> <li> 9. A Day in the Life of a Pediatric Cancer Patient On your first visit you will check in at the front desk of the Pedi- atric Center. The receptionist Walking day and night will know that you are there for til you see a light your first cancer treatment with Then a cure is in sight Dr. Kelker and his team. You will Youve won the fight be escorted back to the treat- That takes a lot of might. ment area where from that time Michael, Age 8 forward you will be able to go May 2004 without waiting in the general Wilms Tumor waiting area. Hopefully, you will find that once you have been to Billings Clinic Pediatrics a couple of times you will feel comfortable and right at home in our department. Our t...</li></ul>

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