Rhabdomyosarcoma Support Group

Hi. My brother passed away from this cancer almost thirty years ago. I knew he was sick and could die but no one ever told me what it meant to die. I was ten when he passed. As an adult that is close to 40 years old I still struggle with his having been so sick and that he died. I am writing to make sure you know how important it is to keep your son informed about what is going on with your daughter and to remember that you have more than one child and although your son is not sick this is a life changing experience for him too. Let him know that it is ok for him to ask you questions and to talk about his sister's illness. Your family will be in my prayers.

my son was diagnosed with Langerhans Cell Histosytosis a few months ago, they were able to remove the tumor from the bone but not the connective tissue, we are doing 51 weeks of treatment. His tumor was on a very unusual place for LCH to occur in the C3 vertebre of the neck, we are in the 12th strait week of chemo and he is such a trooper. The 6 first six weeks of chemo did not affect what is left of the tumor we just did our second mri to see if the chemo is working yet and will be starting 6AP along with Vinblastine next week. The best advice I can give is be upfront about everything, and enjoy the good, keep a smile through the rough.. Peace and Prayers to you in your journey..

Hi,
I'm really sorry about your daughter's diagnosis. It sounds like they caught it relatively early and that's really good news. I am one of the very rare adults with rhabdo. They found mine when it was already Stage IV. I am a 37 year-old mom living in Northern California. I am married and have a two year-old son. I have been battling this disease since 2010. It's been really difficult, but I am fighting this and believe strongly that I will be healed. My advice is to build up a network of support through friends and family. Tell people what you need and accept their help. You can't do this alone. We found a website called Lots of Helping Hands that has been a huge help. It offers a calendar for people to sign up to bring meals, offer rides, grocery shop (you design it to your personal needs). It's been great, because so many people will say please call me if you need anything--but that's too general. You need tangible help. This also, makes people feel really good to be able to sign up and do something specific to help you. I am praying for you and your family. You will get through this and be okay.
--April