I have been living with cardiomyopathy ever since. I remember feeling as if I was trapped there. because something was wrong. Jeannie, i was diagnosed in 1958 with neuroblastoma when i was 18 months old. However, because there was still so much cancer left, he also went through 4 rounds of painful immunotherapy and 24 sessions of radiation. Her family turned to The Children’s Hospital of Philadelphia, where an experimental treatment changed the course of this little girl’s life. Unfortunately my parents were reluctant to tell me much about my operation, and I was a teen before the word cancer was used. The first surgery lasted 8 hours and the surgeon told my parents I had 50% chance of survival but I would be completely paralyzed because part of the tumor was wrapped around my spinal cord. Walking is also painfull at times. These younger survivors have been studied as they've gotten older and there is much that people like us can find out. I have found my soulmates at last! There is a group that are neuroblastoma survivors and other cancer issues in the groups page. 3401 Civic Center Blvd. 2 dozen scars on my back in the shape of circles probably the size of pennies. 60% of patients with Neuroblastoma will relapse. I consoled myself by thinking that if he is still with us when he is old enough to have children then we will deal with it then & we'll just be so lucky to still have him!! This hospital seemed very impersonal. I have approx. Are you on disability? Neuroblastoma and my being sick is never spoken of. Contact St. Jude in Memphis, TN. to get her attention, I simply call her name in a normal voice and she hears me. We were told it was the chemo theraphy drug named Cytoxin that caused the damage. But, I hope that with my reading your stories to him, he may find some solice in the fact that he is not alone. I'm Julie, nueroblastoma survivor as well. He is a brave warrior who was diagnosed with Stage 4 Neuroblastoma at the age of 3 and became 1 of those “45” in September, 2017. As time goes on without recurrence, the time between tests will increase, and eventually the focus may switch to early detection screenings that focus on long-term health effects and/or secondary cancers. Thank you, Head on over to Facebook.. It was around Christmas time, 1995. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. I remember that I didn't know if I could ever go back home. Evidently, this is a side effect of the chemo I received. Growing up as a child I can remember being embarrassed by them and my dad always telling me that they were victory scars and I should be proud to have them, which today, in my adult life, I am. I love to cross stich. I am 42 years cancer free and counting. Founded by Dr. Meadows, the Cancer Survivorship Program was the first-ever effort to develop a pediatric survivorship clinic. Copyright © 2002 - 2020 by Chemocare.com ® All rights reserved. GO GOLD®, Improving Informed Consent in Childhood Cancer Trials, It’s only a Phase! I still have a few memories and I wasn't even 3 years old yet. Treatment for neuroblastoma can be long, difficult, and traumatic, not only for the patient but also for friends and family. Hi reen, I am dealing with the same issue. I am 30 years old and I was dignosed sometime around 13 months of age. Hereditary Neuroblastoma: Edie’s Story. His family started a nonprofit called Team Parker for Life and has helped to fund the Beat Childhood Cancer clinical trial Parker completed. I have been an registered nurse for years but have hit rock, bottom with this high pressured stressful work. Thank god I did because he documented everything.. Your records are likely still available! I had tumours removed from both breasts and more recently was diagnosed with lymphoma. Therefore, it is critical to maintain accurate and complete medical records of your child’s entire cancer journey, from first diagnosis through treatment and including post-treatment screenings. What kind of work do you do? I have proved them wrong on all 3 accounts. Although the basic outline of any survivorship care plan is fairly standard, your child’s specific plan will be unique to him or her, depending on the characteristics of your child’s cancer and its treatment, as well as your child’s general health. I was diagnosed with Neuroblastoma at 9 months, and I am now completely cured and healthy. Bags, gowns, sheets, everything was in place. I had 2 great doctors their names were Doctor Dale Van Duzan and Doctor Edward Kilroy. Hi! Sarah was diagnosed with neuroblastoma while still a toddler. It's nice to know there are other neuroblastoma survivors out there somewhere. Such a plan can act as a checklist to help you ensure your child’s short- and long-term health, both physical and emotional, as well as smooth the transition back into a normal cancer-free life. I posted before that I am a neuroblastoma survivor with neuroblastoma also at age 5 months. After twice overcoming cancer as a young child, Ruby is thriving in college, playing wheelchair basketball and planning for her future. At which time we found out that her I am 26 years old now and living my life to the fullest. I read a fantastic book 'World Without Cancer' and take vitamin B17 religeously. Mommy starts crying and Daddy looking at me and smiling then they would come in and kiss me with where mask on and tell me how much they loved me. and things seem to be a little normal but she would constantly move trying to get AIM OF STUDY: Long-term outcome studies in survivors with stage IV neuroblastoma (NB) are sparse. I was treaded at fairview hosptial in Cleveland Ohio, now it's Cleveland Clinic. I am so excited to find this page! We teach survivors to be good historians of their individual cancer treatment and to be aware of potential late effects, says Dr. Meadows. I've had some major issues because of the radiation to my neck, chest and back. {amount} donation plus {fee_amount} to help cover fees. Palliative or Hospice Care: Does my child need this service? For a long time I didn't know any other cancer survivors and now I know I am not alone. She danced and smiled through 15 months of intense treatment, consisting of 6 rounds of chemotherapy, countless surgical procedures, an autologous stem cell transplant, radiation, and 6 cycles of immunotherapy.

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