Pons tumours in kids

[magr7]

My daughter has being diagnosed with a brain tumour today in the pons region. I have read lots of info saying that these are inoperable which I understand. But I have read a few interesting articles where they have being removed and improved survival from 6months to 5yrs. We are seeing the cancer specialist tomorrow and I am oing armed with all this info I was hoping for some form of positive feedback from anyone regarding this.

Best wishes

Maggie

[magr7]

Thank you so much for your message. I didnt realise you had sent a message. I have spent so much time trying to find out as much as I can on the net.
I am useless on computers I managed to get onto the DIPG ite and register. Just need to go onto it again. I will do that later.  

Our daughter is seven in August and we got the news on the 25th June with a definte diagnosis Tuesday 1st July. She only complained about double visison out of her left eye for less than two weeks. We never thouht anything of this magnitude. We have being told there is nothing they can do. She is having 6wks of radiotherapy with a radio sentising drug. She hasnt started that yet but we will be in full swing next week. I have seen some homeopathic solutions that we can try out. Need to clear it with the hospital.

Take care keep in touch.

Maggie

[ErikaJoy]

Bobbi posted a note on my daughter Ella's Caringbridge site. www.caringbridge.org/visit/ellahope.  Our daughter was diagnosed with diffused intrinsic pontine glioma on 12/07/08.  In the US the standard treatment is 6 weeks of radiation which we did.  Ella finished that on 1/31/08.  On 3/17/08 we headed to a natural clinic called Envita www.envita.com.  On 4/4/08 Ella had a MRI which showed that there was no evidence of a tumor.  We have no idea if it was radiation, natural treatments but either way it was a gift from God.  I started a yahoo group for DIPG parents - to join go to www.yahoogroups.com and type in the word DIPG you will need to make a yahoo id and request membership.  There is also a pediatric brain tumor list, however my list focuses only on DIPG and it consists of parents currently battling and those who have lost their children.  We discuss alternative and conventional treatments.  Another site for you to check out is www.justonemoreday.com there is a lot of good information.  If you post your email address on Ella's caringbridge site I can email you directly.

With Hope & Love,
Erika

[bdm92]

I am working on contacting them.   One thing you might try in the mean time, is when you get on Gunners caringbridge site go to the "guestbook" and write a not in there I am prettty sure that she reads these entries, they have alot of family so I am sure that one of them reads it daily.
I did not get a fax, and yes I am located in the US, in southern IL.
I hope that doctor will be able to help you I can't imagine what you and these other families are going through.
Let me know if you hear something back from them.
Bobbi  

[magr7]

Trying to contact you via fax. We are in Perth w.a  I am thinking you are in the U.S.A.

We managed to get a reply from a surgeon in sydney called Chris Teo who has offered to look at Georgias case fingers crossed he can do something.

I am still trying to get hold of those uys you gave me information about. Had no replies.

Best wishes Maggie

[magr7]

hank you so much again for your support. I did o onto the web site and some strange hour this computer should be burning up by now as this has never stopped looking for any ray of hope.

I am very low today my husband is a little better. Im sure we will gain some inspiration from the webpage. I am going on this evening.

Best wishes

Maggie and Richard

[bdm92]

Also wanted to tell you that while I have been following Gunners story, there is another child that Gunners mom had mentioned and her name is Ella H Hauschildt, her story is also on the caring bridge site.  
Her story seems to be going great, her family took her to a place called Envita in Arizona.  It is an all natural treatment facility, I know everyone has a different opinion about this but if you read her story you will see that after her treatments at Envita she is tumor free, and doing well.  I also had seen her story on the news, it is pretty unbelieveable, but I think it will give you some different ideas to your treatment options.  No one can know for sure what treatments will be best,
I wish the best for you and your family during this time, If you post on the caring bridge site you will see that lots of people will be following your story and praying for your family.

Bobbi

[magr7]

Thank you so much for your information. It is the same tumour you have mentioned. We are not going to let this take over our daughters life.

Thank you so much.

Maggie and Richard  

[bdm92]

Well I didn't realize I couldn't but my e mail on here.  So if you need me to get you any more info then fax me at 618 943 5057

Bobbi

[bdm92]

I just wanted to tell you of someone who might be able to give you lots of info, and good questions for you to ask the doctor. If you go to a site called Caring Bridge, and then go to the name Gunner Gillespie.  This little boy has what I think is the same thing you are asking about, His tumor is called pontine glioma.  If this is the same thing then contact this little boys mom her name is Janna, there contact info is posted on the Caring Bridge site.  I do not know her personally but I do know some of her family, she is very nice and I am sure she would be glad to help you.  If you need any other info to get a hold of her then email me at   ***@****  and I can get you a phone number if you need it.  
Please let me know if you need any help contacting her.

I am so sorry to hear of the news you were given.

Bobbi Metheny