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

Originally posted by paperplanes
I know admittedly little about this particular cancer, but I did a bit of searching online for helpful information. We have had a few children develop cancer in our family, and the parents have unanimously said that the internet is wonderful for tips regarding the alleviation of discomfort, setting up the proper home environment, and the like, while joining support groups or discussing the issue with the parents of other ill children can be harmful. The problem seems to be that these groups can often exacerbate the pain and worry the parents are already feeling, due to the overwhelming presence of other families' anguish. Of course, many people find these groups helpful--I only want you to approach them with a bit of necessary caution. I did locate the following webpage, created by a family whose son survived Ewing's Sarcoma. It has several pages of advice relating to nausea alleviation, home preparation, etc. as well as an extensive (I do mean extensive) collection of links for everything from support groups and associations to medical journals, survival pages and helpful books. www.cureourchildren.org...

I'm sorry I can't provide anything more than this. I wish your family only the best during this difficult time.

Thanks for that paperplanes - I understand what you are saying. I have been a pragmatist my whole life and I'm not going to stop now. Thank God we have a lare extended family, many who are close and so many great friends who have already stepped up to the plate...still, we will take advantage of anything we can - I will take the time to check out your link tomorrow - I'm putting it in my link file - head is spinning now - thanks for the thoughts and info - I knew coming here I would get help from people such as your self. It is greatly appreciated.

ColoradoJens

Originally posted by annefran
Attitude is everything.

Nutrition is right up there beside it. Have had reasonable experience with Gerson therapy.

According to many nutritionists cancer is fed by sugar. Therefore, sugar should be avoided. Please google Gerson Therapy.

Also, important is stimulation of the natural immune system. I would recommend a 'proper' reiki practitioner (there's a lot of charlatans out there).

I know where you are coming from. Anything is worthwhile when a member of your family has cancer. Leave no stone unturned.

I will be sending some reiki over to your son every night before I sleep.

We all very much care about this. It's an awful situation, bit you WILL get through it.

That is the kind of positivity that we need - thank you so much for the info - I am going to investigate the reiki practitioner and I agree that nutrition/general health is HUGE. I am reasearching it right now ....thank you again for taking the time -

ColoradoJens

Originally posted by ll__raine__ll
i've no knowledge or wisdom to share
but wishing your son, self and family all the very best.

Just the fact that you posted means a lot to me. Thanks for your thoughts and keep thinking like that!

ColoradoJens

OFf the top of my head I will go ahead and post a few things.

Ginger, Peppermint tea--goot to help prevent nausea

Chamomile, catnip tea--may help to calm him down

Echinaciea, garlic, goldenseal, myhrr, ect--helps to stimulate the immune system

Dandelion, cayenne, licorice, plus all the ones above--blood purifiers

I really know nothing about cancer though. I would check all thse with your doctor, at least a naturopath, to see if they may have contraindictions.

Originally posted by Ign0rant
I know how it is. You are panicked and it seems like you are drowned in agony and pain. Some of my relatives are also currently battling cancer. For your son the most obvious action is to tell him what you truly feel about him. Spend time with him and make sure you don't waste any time. But even more important hopefully the cancer is in it's early stages and the chemo drugs don't have to be too strong. When the chemo begins to have it's pharmacological effects make sure your are there. When he vomits your presence will make it better. One thing to remember is that those battling cancer sometime want to be left alone. If your son ever gives off that vibe be sure to respect his wishes. Many times I thought that spending time with my relatives was a favor to them but all they wanted to do was be alone.
That's all I can think of as to the best method on how to approach this. Hopefully your son will get thought this. Best of luck.

-Ign0RanT

Thanks for your thoughts. I agree with you and I am going to be by his side for the ride - I had to quit school and already I am giving him shots in his "port" - and yes, he is his own little man and I here what you are saying - already I think he feels a lot of eyes on him. We are going to do our best - thanks again for the post, it means a lot .


ColoradoJens

reply to post by ColoradoJens


anytime.

I also read a book about visualisation - getting people to draw their cancer, and build it into a scenario where it was being attacked and killed by white blood cells, etc.

It had good results.

We are all very much concerned and wish to help

Hi ColoradoJens, Just wanted to send some positive vibes your way, And to let you know we are all here for you through this hurdle, Your little one will be in my prayers,

Have you searched for any forums where other mothers of children with this could give you there account of things, Sometimes the best info we can get is from the people going/or have been through such things.So may be worth having a good peek around and see whats out there,

Keep us updated and know I'm only a u2u away if you ever need a friendly ear,

sorry about your situation.

for what it's worth, i'll throw this out there...
make of it what you will.




-

From experience I would suggest the following,

Keep emotion separate from medicine/medical treatment and decisions.

Do not allow yourself to be rushed into making decisions.

Consult with as many different Dr.s as possible. Be aware that many Dr.s are loyal to there particular discipline.

Be open to a multi treatment approach nutritional, conventional etc. It does not have to be one or the other.

You do not owe any Dr. your loyalty. The Dr.s you employ are tools to be used to better the health of your child. If you are not happy with any Dr. do not hesitate to find another. You are paying them.

Research everything from treatment options to which Dr.s stand out as premier leaders in there field.

Find your child a strong patient advocate, this could be mom or dad or someone else.

The patient advocate must not be a "head nodder" and will never say "you are the Dr. you know best" but rather question the Dr. and care nurses on everything and make them explain every move they make in detail. (polite but firm) In the case of a hospital stay making friends with the nurses is of great value.

This advocate should be willing to attend every appointment and every treatment your child has as well as "live" at the hospital and document everything, the when, what and why of every diagnosis, proposed treatment, treatment, Rx etc.

Request every scan, X-ray, MRI, CT scan be copied onto a disc for your records.

In the case of chemo therapy there may be a variety of different therapies given to determine the most effective. The advocate should document each therapy and the side effects and effectiveness associated with each therapy.

In short, the advocate should be your "case expert" and will become a valuable resource for the many Dr.s and nurses that care for your child.

The most important advice I can give you is to stay strong and have faith, pray, You will find God will deliver the right people to you at the right time.

You are in my prayers, God bless

Sorry to hear about the boy.

I'll post some links for you that i've found on this site, and some info i've read about elsewhere.

im not sure of the mix ratio but if ou read the full article it will tell you...
it's something like:
1/4 bi carbonate of soda
3/4 maple syrup
put in fry pan, heat it up and mix together and stir for 5 minutes. Apparently this will bind the two together.
take two table spoons per day for 1 week, then take 1 table spoon for one week. Apparently because cancer cells absorb 15 times the amount of glucose (sugar) as a normal cell, the sugary maple syrup binded witht he bi-carb of soda goes like this. cell eats the glucose but because its binded with bi-carb, the sudden change in the PH level of the cell will kill it.

I've also heard this is the same treatment someone ele has said. Treat it like a fungus... use bi-carbonate of soda....
"The Remedy - Maple Syrup and Baking Powder (Bicarbonate of soda)
Mix 1 part baking soda to 3 parts maple syrup
Heat rigorously in a pan for 5 minutes
Take two teaspoons of the mixture per day for the first week and then one teaspoon per day for weeks two and three - the remedy should not be continued after three weeks
"
www.abovetopsecret.com...

and heres a direct link to the article
www.healthmad.com...

Heres another one about the same thing from another website called nexusmagazine. i tried the link to the nexuswebsite page but it seems to have disappeared... but it still has some info in the link provided below
www.abovetopsecret.com...

Heres another cancer treatment link
www.abovetopsecret.com...

ad another one....
this they reckon is 100% effective
www.abovetopsecret.com...


Also i've read another thing in a nexus magazine where some dude had cancer and got rid of it using alot of selenium (which is large doses can be bad for you btw). Selenium is a very very good anti-oxidant and has strong anti-cancer properties.

Also i'm pretty sure there was a thread about vitamin d-12, or someting like that.. it contains great anti-cancer properties. i think you can get taht from eating apricot kernels i think it was. Actually i read in a magazine a few days ago called HARDEVIDENCE, that one of the best anti-cancer things is like vitamin D and plenty of sunlight so it gets converted properly or something.

I'd recommend buying this magazine called hard-evidence... it had a black cover on it, saying blah blah blah obama - a conspiracy magazine btw. But at the ack of it it had heaps of things in there about anti-cancer properties and which vitamins and minerals to take.... and it had statisticas about how good they are at fighting and reducing cancer....

Seriously give it a go.Is there anything to stop you trying some of these? Is maple sugar and bicarb going to hurt your child? Are vitamins and a bit of sunshine going to hurt? or eating some kernels? Keep researching on this website as there have been many anti-cancer threads made all providing good information....


[edit on 25-1-2009 by DaRAGE]

Jens, your son and your entire family are in my prayers.

Intention is a powerful thing. Set your mind to the outcome you want and never let doubt set in. I'm sure all of ATS will be sending happy thoughts of good health and well-being to your son. And you.

Very Sorry to read about your little Guy.


Luteolin is a flavenoid contained within Chrysanthemum tea. It has been found to bind cancer cells together. It does NOT cure cancer, but does force Cancer cells to group and therefore make treatment more efficient and requiring less Chemo or cobalt knife or whatever the treatment may be.
Please consult your doctor, but it is being used at the Cleveland clinic which is a highly respectable health care system in the USA as well as India , China and Europe.

It must be heartbreaking to hear a diagnosis like that.

I'll be thinking of you and your son, along with everyone else who reads this thread I'm sure. There's lots of good advice here already, I just want to repeat one piece from Anonymous ATS:

Get yourself a psychologist (or any other therapist/clergyperson/etcetera). There will be loads of people watching out for your son – all of their advice will filter through you – and somehow you have to hold yourself together and not let the disease eat you. Take care of yourself whenever and however you can.

[edit on 1/25/09 by americandingbat]

Originally posted by DaRAGE

Seriously give it a go.Is there anything to stop you trying some of these? Is maple sugar and bicarb going to hurt your child? Are vitamins and a bit of sunshine going to hurt? or eating some kernels?

Actually here's a good example of why caution is needed. These simple 'kernels'...if I'm not mistaken, apricot pits contain cyanide. Some therapies also make one sensitive to sunlight...

I do agree that one should be happy with one's doctor, and also about the patient advocate. Not all doctors are alike, and there may be differences in their approach. I, too, encourage a healthy attitude, visualization, prayer.

But I stress that many well-meaning folks try to steer others away from standard treatments, and as a cancer survivor myself I can say that is a mistake. I enlisted a naturopath to get me through my radiation therapy, and that's why I encourage all to do the same.

You are doing the right thing to get a second opinion. This type of cancer doesn't normally start until a child is around age 10. It would be a very, very rare thing in a 3 year old.

Please keep us informed. I will keep you and the little one in my prayers.

Originally posted by JohnnyCanuck

Originally posted by DaRAGE

Seriously give it a go.Is there anything to stop you trying some of these? Is maple sugar and bicarb going to hurt your child? Are vitamins and a bit of sunshine going to hurt? or eating some kernels?

But I stress that many well-meaning folks try to steer others away from standard treatments, and as a cancer survivor myself I can say that is a mistake. I enlisted a naturopath to get me through my radiation therapy, and that's why I encourage all to do the same.

Well yes caution does need to be taken. once i posted that maple syrup thing, i read a post a few up that says dont have sugars asit will speed the growth up. So who do you listen to? everyone needs second opinions. All we're ding is laying some foot work on the table for the mum to sift through and do what she thinks it right. and who says not try some of these alternatives while doing chemo at the same time.... I sure as hell would be doing both. but thats just me.

reply to post by ColoradoJens


You may want to check out my three year old's website who also had ewing's. If you go back to the Oct. 26th post, you will find 79 cases of ewing's that I have found. Hugs, Susan
www.caringbridge.org/visit/jacobralston

I am sorry to hear of this. I'll keep this flagged so I can check it and see how things go. Seriously other than the medications and such keep laughter and good spirits with him. It will be hard, be brave.


Peace and Blessings to you and your family

Find a bulletin board for people that have that form of cancer. Usually the articles on the topic are sanatized and don't really talk about the reality of the situation.

But be warned, sometimes the real facts are hard to handle. Best of luck to you.

Science and Politics of Cancer

I wish you luck, check out the video. Everything is gonna be just fine.