Asking for Help - Ewing's Sarcoma in my three year old Son

ColoradoJens, all the best to you and your family as you confront both this disease and the whole cancer treatment process.

When you have a chance, I know of a Colorado-based macrobiotic teacher who can help you identify postchemo options for recovering your child's health; he is fully accredited by the world-famous Kushi Institute of Macrobiotics in Massachusetts, plus he has decades of macrobiotic counseling experience. Macrobiotics involves the incorporation of whole foods into the daily diet, foods which have the result of stabilizing the acid alkaline balance of the human body (which should always be slightly alkaline for optimum health). Many hundreds of cancer patients have been healed by working with a macrobiotic counselor to apply those principles to their own conditions.

Scores of medical doctors, including Dr. William Castelli of the renowned Framingham Studies on the longterm development of cardiovascular disease, have great respect for macrobiotics, and many of those doctors recommend macrobiotic lifestyles to their patients. In additon, a number of medical doctors have received macrobiotic training at the Kushi Institute over the last 30-plus years.

Here is the web site of a Colorado macrobiotic counselor, Fred Pulver, who will be glad to respond to your e-mail questions for no charge. He lives and works in the Carbondale area:

www.macrobiotic.org...

His email address is: [email protected]

What I am suggesting, Jens, is to contact Fred when you can. As others on this thread have mentioned, no one should ask you to unilaterally make changes in the care your child is currently receiving. Fred will be able to suggest added things you can do in the future to increase the health of not only your child, but the whole family as well. He has worked with a number of cancer patients, including some who were eventually told by the medical establishment that nothing more could be done for them. If that should happen to your family, Fred will help you identify excellent survival strategies that do in fact exist.

Peace and blessings. If you have further questions, U2U me.

[edit on 2/5/2009 by Uphill]

Originally posted by Uphill
ColoradoJens, all the best to you and your family as you confront both this disease and the whole cancer treatment process.

When you have a chance, I know of a Colorado-based macrobiotic teacher who can help you identify postchemo options for recovering your child's health; he is fully accredited by the world-famous Kushi Institute of Macrobiotics in Massachusetts, plus he has decades of macrobiotic counseling experience. Macrobiotics involves the incorporation of whole foods into the daily diet, foods which have the result of stabilizing the acid alkaline balance of the human body (which should always be slightly alkaline for optimum health). Many hundreds of cancer patients have been healed by working with a macrobiotic counselor to apply those principles to their own conditions.

Scores of medical doctors, including Dr. William Castelli of the renowned Framingham Studies on the longterm development of cardiovascular disease, have great respect for macrobiotics, and many of those doctors recommend macrobiotic lifestyles to their patients. In additon, a number of medical doctors have received macrobiotic training at the Kushi Institute over the last 30-plus years.

Here is the web site of a Colorado macrobiotic counselor, Fred Pulver, who will be glad to respond to your e-mail questions for no charge. He lives and works in the Carbondale area:

www.macrobiotic.org...

His email address is: [email protected]

What I am suggesting, Jens, is to contact Fred when you can. As others on this thread have mentioned, no one should ask you to unilaterally make changes in the care your child is currently receiving. Fred will be able to suggest added things you can do in the future to increase the health of not only your child, but the whole family as well. He has worked with a number of cancer patients, including some who were eventually told by the medical establishment that nothing more could be done for them. If that should happen to your family, Fred will help you identify excellent survival strategies that do in fact exist.

Peace and blessings. If you have further questions, U2U me.

[edit on 2/5/2009 by Uphill]

I am definately going to contact Fred. Thank you for this important information and I will do more research regarding his services. Your thoughts and positive message are very much appreciated by all of us. I will U2U when more appropriate (sorry head spinning currently).

ColoradoJens

Originally posted by ColoradoJens
reply to post by Byrd

 

Byrd,

I agree with you regarding trusing this treatment. As an open mineded sort, I am researching and learning more about a lot right now - much to sort through - any suggestions or info you may have come across is greatly appreciated. Any more thoughts on the "why" for the sis and I?
Thanks again,

ColoradoJens

There was a Nova program about this recently and they said that it's possible for one identical twin to get cancer and the other to not get cancer. Whether it's environmental or what is fairly unclear because there's bazillions of variables. Why with my family history did I *not* get fibromyalgia and endometriosis... but my poor daughter has them?

It's obviously something that's causing it (and likely more than one something)... but in many cases you can't put a finger on it. Some folks are more resilient and others are less so -- and it could hinge on tiny things like someone going through extreme stress for a few months.

I found a site that I really like -- www.cureourchildren.org...

It's dedicated to a survivor who's still alive, and has all sorts of great pages like "I just got the diagnosis on my child... what do I need to do?" and includes stuff I never thought (like what tests to request.) It also (thank you, sir!!!) includes things on sick leave and on medical reimbursements (the man just won my nomination for sainthood!)

He tracks the latest drug therapies and approved drugs (more blessings!)
cureourchildren.blogharbor.com...

He talks about protocols (and this from a guy who's been there) and nutrition:
www.cureourchildren.org...

...and, as before, network with parents. He's got a mailing list that you can sign up for.

Keep us posted, please... even if only by U2U. We mods really are here for you and your family.

One last note: tell YOUR doctor (and your husband's doctor) about the situation. There may be time when you have trouble sleeping (and may need some meds to get through the stage) or when he needs to be aware of the great stress you're going through.

It's a family team effort -- your little guy will do better if you are in good shape. I know it seems selfish sometimes (been there with my daughter's health problems), but you need to be making clear-headed choices and sometimes a nice sleeping pill (or an anti-anxiety pill) taken when you need them (your doc can prescribe some "PRN" meds) will help you cope more easily.

Uhh... and eat your veggies, okay??? (just had to do the "mom" thing...)

I am sorry for what you are going through right now and you and your son will be in my prayers too.

After i read your story i went over to the Daily Mail and in a neat bit of synchronicity, they were running this story about a boy with neuroblastoma who had been all but given up on by his doctors but whose tumours shrank when they applied alternative treatments.

I hope it may give you some ideas,

The boy with 11 tumours survives after grandparents' alternative therapy treatments

reply to post by ColoradoJens

Google MMS.

what about nano silver.

Have you tried it yet?

look it up in google.

some people have reported it works for cetain cancers.

here is one site with testimoniels:-

www.silverbulletenterprises.com...

Originally posted by Byrd
One last note: tell YOUR doctor (and your husband's doctor) about the situation. There may be time when you have trouble sleeping (and may need some meds to get through the stage) or when he needs to be aware of the great stress you're going through.

It's a family team effort -- your little guy will do better if you are in good shape. I know it seems selfish sometimes (been there with my daughter's health problems), but you need to be making clear-headed choices and sometimes a nice sleeping pill (or an anti-anxiety pill) taken when you need them (your doc can prescribe some "PRN" meds) will help you cope more easily.

Uhh... and eat your veggies, okay???

(just had to do the "mom" thing...)

Byrd,
I see where you are coming from already. As my son gets worse, I get in better shape? I must. Thanks for the mom quote - fortunately, that's how we grew up and the kids cant get enough of em. Thanks for the thoughts.

CJ

Originally posted by geek101
I am sorry for what you are going through right now and you and your son will be in my prayers too.

After i read your story i went over to the Daily Mail and in a neat bit of synchronicity, they were running this story about a boy with neuroblastoma who had been all but given up on by his doctors but whose tumours shrank when they applied alternative treatments.

I hope it may give you some ideas,

The boy with 11 tumours survives after grandparents' alternative therapy treatments

geek,

thank you for that and sorry for the late response - I liked the story and I hope all continues to go well for the boy - I sent it to my sis who's boy has the same thing and minutes later got a call from my bro telling me to look at it - funny how within minutes of you sending this article, my entire family was talking about it! Thanks, it's appreciated.

CJ

Originally posted by LeoPardus70
reply to post by ColoradoJens

 

Google MMS.

Thanks for the tip - I am in contact with the folks there now and am getting more info regarding his age/chemo etc. Many postive endorsements of MMS.

CJ

Originally posted by esecallum
what about nano silver.

Have you tried it yet?

look it up in google.

some people have reported it works for cetain cancers.

here is one site with testimoniels:-

www.silverbulletenterprises.com...

escallum; very interesting. I was unaware of this. After reading the site, I am doing more research. I wonder how soon the FDA will make "nanosilver" illegal? Did you and I batlle on a thread about nano-particle shirts? I may have posted in haste after checking this out - thanks.

CJ

Hi all; just wanted to throw out another thank you to everyone who has contributed to this thread - many great ideas and observations that I will use to help our son. I am still coming to grips with the amount of goodwill that has been put forth by many we don't know personally. It is overwhelming, thank you.

"RC" is in his second round of chemo starting today. We got buzz cuts last week; most of it is gone now. He is coming slowly to the realization that this is what we are going to be doing (last week in the hospital two nights for a 100 degree fever) and he is making the best of it - it's hard to dent a 3 year olds propensity for mischief.
This chemo goes 5 days straight, all day. We are starting a day late due to his low counts (hemoglobin and white in particular); this is our first hit of this cycle (the last was 48 hours two weeks ago) and it's going to be a ride (and then only 7 more to go of this one!)
If any of you saw this boy you would want to take him home immediately as he is the best little guy ever. He is so beautiful and caring and original - if you think of it, everyonce in a while just throw out a positive thought to a tremendously great person who is having a tough time - for now. We have set up a care page but I am uncertain if posting that info here is a good idea? Perhaps select u2u? Any advice there is appreciated and again thank you all. I keep a baisc update rolling here if you are interested. God Bless.

ColoradoJens

reply to post by ColoradoJens


Im not saying the chemo isn't going to work, it probably will put him into remission. I'm just very concerned about what you need to do afterwards, and to build his immune system up. My maternal grandmother's family (she was one of 17 kids, all Catholic and they didn't use birth control. We all wished my great grandmother could have had a better life, she was a natural conspiracy therorist herself and could have written books on the subject) is prone to getting cancer, mainly internal organ cancer. And most of them died! The only 2 that survived cancer for many years did not use chemo! The chemo put everyone into remission pretty much, then it came back and because they had no immune system spread through them like wildfire.

So, you need to research and pay attention to his immune system. Do everythng you can to increase his immune system after chemo. And do it in spades!

[edit on 11-2-2009 by mystiq]

Originally posted by ColoradoJens

Originally posted by esecallum
what about nano silver.

escallum; very interesting. I was unaware of this.

Hi CJ,
I took a look at silver myself, and I found this very interesting site that gives some pretty precise warnings about the type of water to be used, and not to use salt in the process. I present it for what it's worth. Once again, luck to you and the lad.
www.cancertutor.com...

[edit on 11-2-2009 by JohnnyCanuck]

I stopped what I was doing, said a prayer to God that He intervene in your situation in a miraculous way. I call out to every Christian to stop whatever you are doing when you read this and pray -- and ALL ATS members stand together for a healing for this boy.

hi i have ewings and am currently in treatment. sad part is about this disease is that you have very little control over what happens. nutrition can help PREVENT but does not CURE. i eat when i feel like eating and eat what i want. high calorie meals are best. as for nausea doctors prescribe meds for that and some wont have a problem with it. most will go through radiation and surgery. ive had a rare case where the tumour started in my shoulder and spread to my liver and lungs. ive had sugery to remove the one in the liver that was the toughest part and am going through radiation now to get rid of the shoulder and the tumours in the lungs...radiation is cake it may lower counts though preventing you to receive a cycle of chemo so far i havent missed a beat though i have 5 cycles left and cant wait to be done. its important to keep a positive attitude get out and do things when you feel like it and keep focused even as a parent.

hope this answers some questions

o yeaaaaa greetings from SIXBURGH!!!

[edit on 12-2-2009 by Byrd]

Originally posted by ColoradoJens
Byrd,
I see where you are coming from already. As my son gets worse, I get in better shape? I must. Thanks for the mom quote - fortunately, that's how we grew up and the kids cant get enough of em. Thanks for the thoughts.

CJ

Yep. He needs you to fight for him. A fighter lasts longer if they're in good health and reasonably rested.

I have been in almost exactly the same situation as you, so I know a bit about the toll it takes on the human body. It is also devastating on marriages (or can be. Wasn't to ours, but we were probably the exception.) If things seem rocky, don't hesitate to get counseling. Sometimes having someone look at things differently can make a HUGE difference.

And please tell him that I said he's a hero!

I also recommend a nice dose of cartoon shows and books and (if they allow it) a comforting toy (stuffed animal or something fun). Google for videos for children on Youtube... there's some storytellers (can't remember any right now) and songs and so forth that will keep his spirit bright.

Poor lil' guy. Please please keep us updated.

Read this book. www.amazon.com...


Take some key supplements like Pancreas Tissue as far away from a meal as possible. www.ultralifeinc.com...

Germanium 132 www.vitacost.com...

www.stopyeast.com...

[edit on 6-3-2009 by Sargoth]

Here's more info. on the most accurate, effective ant-cancer program I know of. The healthexcel program is one of the few versions of the program that is still available.




www.drkelley.info...
www.healthexcel.com...
cancertutor.com...
www.road-to-health.com...

[edit on 21-3-2009 by Sargoth]

[edit on 21-3-2009 by Sargoth]