Anyone Out There with a Child That Has Rhabdomyosarcoma Cancer?

I am just so sorry you have a 3-yr-old with cancer. What an awful thing for you all to have to go through. Chemo can be so hard, even on adults! I hope he does okay. I don't know any children with cancer, so I have no advice. But you hang in there, L.! I hope you all get through it okay.

Hi my 2 year old grandson has had this sarco since november and i am going through hell we live in scotland uk he has it in his bladder/ prostate he is getting surgery to remove his prostate and bladder on the 28th april then 2 weeks after it we are getting sent to jacksonville fl for proton therepy for 2 months i understand your path looking for answers as i think the doctors never give us straight answers hence the reason im on here myself first we where told they didnt think is was inside the bladder then it was thene after more scans and waiting i wasnt it was on the prostate and growing on the walls of the bladder so an american surgeon said proton therapy may get rid of it without removing anything but now the uk doctors say in there eyes the think he is wrong and will remove prostate and bladder for his best chance of survival. I hope you get this email and pray everything with your son worked out well i you could please let me know how you got on with this. Best regards tony burnett

Hi-
So sorry to hear what you are going through. My thoughts and prayers are with you. I don't have any information for you, but wanted to tell you about www.carepages.com. You can go there and find people who are going throught the same thing as you as well as post your own thoughts and feelings.

J.

L., a friend of mine Dave deBronkart has just been through an incredible year beating stage four renal cancer and has been working with care providers and others involved in the e-patient movement.

I just now asked Dave what he'd recommend you do first and he said you should see if www.acor.org has a group for that cancer. He says the online registration (needed to participate) can be quirky to get to work, but it's well worth the effort if they have a Rhabdo group.

You might also read through his journey at his CaringBridge journal: http://www.caringbridge.org/visit/davedebronkart

The posts appear newest first, so when you click the "read my journal" link there you'll want to be sure to start at the beginning. Near the end of the year he'll have links to his new blog where he's posting the latest e-patient information he's working on.

Renal cancer is a very different from what your son has, but there's no difference in a patient's need for support and information for managing their own care, or, in this case, for you managing your son's care.

My heart goes out to you and your family L..

You know, when my mother was diagnosed with breast cancer, I hunted down the doc who connected Lance Armstrong to his specialist. I figured, what was good for Lance was good for my Mom. The doc told me that I should get to the hospital with the most funding. So I focused my attention on MD Anderson in Texas and Mayo Clinic in MN. Since we live in WI, we considered Mayo Clinic, where an Uncle of mine has had such incredible treatment. So, that is what I would recommend if you can do it. I think on the east coast that might be Columbia or John Hopkins.

Also, the role of the care-take or advocate can be daunting for a family member. There is a fabulous establishment in Madison, WI that you should definitely contact. They are called the Center for Patient Partnerships. They are a wonderful patient-advocacy service. They can search the entire country and possibly the world for what you want or need for your son be it a type of doctor, study, hospital, support group etc.. Doctors can't possibly know all of the studies out there, and hospitals are competitive so I would seriously contact this unbiased source:

http://law.wisc.edu/patientadvocacy/services/index.html

Best wishes and thoughts to your family. Your boy has a strong little body- he has a better chance of kicking this than many and a strong Mom to boot I am certain.

A.

L.,
I have no advice for you just prayers that your son will fully recover healthy and happy. Best of luck!
Jen

I don't have any suggestions, but wanted you to know I will pray for your son and your family.

L.- My heart goes out to you. There is no way to describe the utter shock and heartache that comes when a parent receives this kind of news. Our daughter was diagnosed with neuroblastoma (stage 4) when she was just 12 months old, and it completely changed our life.
There is a lot of support out there for families like yours... you just have to know where to look. I recommend you begin by meeting with the social worker in the hospital where your child is being treated. They usually have TONS of resources/contacts to help support you through this time: everything from financial to emotional help. Also, try to get to know some of the other peds oncology families while you are there. Unlike most other people, they know exactly what you are going through and can offer the kind of advice and support that only comes through first-hand experience. Some of them have been battling this for years, and can be a real source of encouragement. Which children's hospital is your son being treated at? Depending on where you live, there may be additional local resources available through Children's Miracle Network, etc. Also, curesearch.org is a wonderful website to help you navigate through all the medical information pertaining to rhabdomyosarcoma.
Best of luck to you as you travel this journey. Please feel free to contact me at ____@____.com if you want to talk more.
~ C. Davis

I have never heard of that, but maybe the hospital or your son's oncologist know of a pediatric cancer support group? Google it? Even if the support group doesn't involve parents of kids with the exact same kind of cancer it might be helpful to connect with other families going through the whole chemo experience. Best wishes for your son's recovery. I will have him in my prayers.

# Stage 2: Cancer is located in only one area (but in none of the areas in Stage 1), is smaller than two inches across (5 cm) in size, and has not spread to the lymph nodes.

Side effects of chemotherapy: Chemotherapy drugs generally fight rapidly dividing cells in the body. Cells that divide rapidly include both the targeted cancer cells and healthy cells in the blood, digestive tract, and hair follicles. Depending on which anticancer drugs a patient receives, he or she may experience symptoms when healthy cells are damaged along with the cancer cells. If healthy blood cells are destroyed by chemotherapy, the patient may be more susceptible to infections, bruising or bleeding, and fatigue. When cells in the hair roots or digestive tract are affected by anticancer drugs, the patient may have hair loss, nausea, vomiting, or mouth sores. Not all chemotherapy patients develop all of these side effects, and the symptoms usually go away during the recovery period or after the treatments are done. Doctors can prescribe medicines and other treatments to control most of the symptoms.

Just a few things I found on the internet. Good luck and I will pray for the best.

I don't have any advice, but know that my prayers are with you and your family! Please write me back if you just need an ear or someone to talk to- you'll get through this- Give it to God.

L. - your son and family are in my prayers. I pray that God will give the doctors wisdom and your family strength as your son goes through this cancer. Hope you will update us with good news from time to time! Take care of each other - X.

I dont have any advise to you, but i do want to send you my heart and prayers. Please stay strong and leave your worries to god.

I have never heard of this. Thank you for sharing. What can one say other than your son will be in my thoughts and prayers, K.

I also don't have any advice or understanding, but when my cousin's son was 10, he was diagnosed with a rare and aggressive brain cancer. He's now 13 and is in remission and doing great! It was a rough road at times to get to this point for them (and obviously nothing I'll completely understand), but I think my cousin belongs to a support group. If you'd like, I can find out more about it??

Otherwise, hang in there, and stay strong!! Your little one will be in my prayers.

I do not have a child with Rhabdomyosarcoma Cancer, however, I went online to find you a support group and found this website that I am sure will help you connect with another parent going through this. It list children and their websites and their stories.

http://www.acor.org/ped-onc/hp/rhabdopages.html

Oh my God Bless you for strenght. Look up the cancer in search or go to www.mayoclinic.com and look it up there. Keep your strenght up! I will keep you in my prayers. If you ever need to talk my email is ____@____.com.

Hi L., I have a friend whom I thought his son had this kind of cancer....but his is different.He did email me with a name of a little boy with it he met thru carepages and forwarded me their info. I am not sure how to get this to you.If you email me back I will forward you what he sent to me. Hope this makes sense..........I can connect you to the mom who has the little boy with this certain kind of cancer and she will be able to correspond with you I am sure. You might have to log on to the carepages to find her. Again, just email me back and I will forward what I have. And I will send a prayer out for your little one. Annie

L.,
You're dealing with, what I would imagine to be, one of the most difficult struggles as a parent!! I am so sorry you and your family are faced with this. You are wise to become informed as best you can and to seek support.

Whenever I have medical questions, I go to www.mayoclinic.com. You might find more info there and can be sure its reliable. There may also be an official website for that type of cancer.

Call on the Lord; the Healer. Throw every emotion on Him, He can take it. Then lean on Him and TRUST Him.

HUGS to you, L.!

K.