WE NEED A DIRECTION! PLEASE HELP!!!

[Alyviascure]

Hello. my name is Ryan. My daughter Alyvia, age 15, has osteosarcoma. A bone cancer. She was diagnosed march 2019. It started in her knee. She went thru the standard regiment of chemo for child hood cancer of this type and a knee replacement, here in Atlanta GA. It reoccurred in her hip and then we had a hip replacement. Then showed spots in both lungs and had surgery to remove some of the spots. After surgery we started a different type of chemo and since stopped because scans showed that the chemo was not doing anything. Doctors recommended a proton beam radiation treatment that will maybe slow the cancers progression. We just finished that treatment approx 8 weeks ago and a scan last week showed no new spots and a very small amount of anything increasing in size. We are looking for treatment suggestions weather here in the US or outside. It seems we have reached our limits here. Too many "Politics and greed". please feel free to so share any advice, experience, suggestions. PLEASE!!! thankyou...

[sassy59]

Good morning to you Alyviascure, I can sense the total desperation in your post. How difficult it must be for you to see your beautiful daughter go through so much.

I am not really sure where you go from here but I know you won’t give up. I wanted to say hello and welcome but I know that’s not what you want from a reply really. Proton beam treatment is meant to be very good so I’ve heard but after that?........

Sorry I can’t really be of help but I truly hope your daughter can and will make a good recovery. Stay safe. Xxxx

[2greys]

I have sent a (hopefully constructive) private message, please click on the icon at the top of the page that says "Chat".

[peege]

Hi, I've seen several stories in the media about British families looking for help to get treatment in the US for their children so I'd always presumed the US was THE centre of excellence in Cancer treatment and thought thats because of the enormous funds available. Funds for research here mostly come from our charity 'Cancer Research'.

I most sincerely hope that your search proves fruitful and wish the very best for your beautiful daughter. I expect you've already contacted the best medical schools like Harvard. ❤ from England

[Bkin]

I am unable to advise but so sorry you and your daughter are having to go through this especially at extremely high risk in a pandemic with travelling restrictions and quarantine requirements.

Hope you can access the treatment that will help your daughter.

Best wishes

[Katinka46]

Welcome to this forum, what a take you have to tell. Thank you for that. A lovely picture of you both. I do hope things progress.

Love and hugs in this difficult time,

Kate xx

[Ziggyharley]

My best friends daughter went thru the same thing.

She was diagnosed at 13 she is now 21 and very lucky. Hers also started in her leg. They never amputated it but did many surgeries over the years. She went to seattle children's hospital. They stayed at Ronald McDonald house

Which is specifically for cancer families. I can find out more for you as I am not sure of all of the specifics. I'm so sorry you are going thru this, I know how hard it was for my friend. Children's is a great place.

[Ziggyharley in reply to Ziggyharley]

I just remembered her drs name was Dr. chappy

sarctrials.org/chappie_conrad

[Alyviascure in reply to Ziggyharley]

Thankyou. Would like to kno what type of treatments they received if possible. We went to Children's in Atlanta.

[Ziggyharley in reply to Alyviascure]

I will try to find out for you

[Alberta56]

Best wishes and good luck. May your search be successful.🧡🧡🧡

[Dedalus]

Sorry can't help, but wish you all good luck and very best wishes for your search. Big hugs to you and your lovely daughter.