Ewing's Sarcoma - Cancer Message Board

TheWig · 04-22-2009, 09:07 PM

Needs some immediate Help for my 3 yrs old Grand baby

Hello My wife and I are raising out 3yr old grand-daughter. Last Saturday we notice that she was running very abnormal. Almost like she was almost falling over. So I decided to take her to the doctor to see if there was any problems. When I took her in on Monday, the doctor noticed that her left leg was swollen. So she decided to take some xrays. She felt, and the radiologist felt that above the knee appeared to look like Ewings Sarcoma. She explained to me that this tumor was a very aggressive cancer and needed to be address ASAP. So the next day we were off to the children's cancer hospital. The doctor there felt that the diagnoses was correct and he ordered several test. Today we spent 8 hours at the hospital with several doctors, including a ortho spec. Ultra sound, xrays, etc. Ultra sound came back good. xrays not so good. Ortho Spec is pretty sure that it is Ewings Sorcoma and wants some more test. Tomorrow she will have a CT. MRI, & MIBG Injection. Thursday will be the MIBG test and full body scan. And Friday will be the Biopsy. The Ortho Spec was very brunt about everything. Gave up worst case. He told us that if the femur bone has too much cancer that the chances of a replacement femur was unlikely and they would have to remove the leg. The is our precious baby and it scars us. The ortho Spec is highly recommended. We will get a second opion. My question to all of you is, has anyone had they baby with the same issues recovered with a bone replacement. He says out issues our that the baby has very little bones, and there is not much to work with. I just cant amagine her going through her child life without a leg. He also tells us that she can not be fitted for a leg for several years. Until she starts growing.

I need some help soon. I'm only looking at a week tops.

Thanks

rudiraven · 04-23-2009, 08:44 AM

I am so sorry for you and your grandbaby. I've never dealt with this issue but I agree a second opinion is a good idea. If they must remove her leg she will learn to cope as will you and they have wonderful prosthetics nowadays that she can be fitted with when she's older. Having one leg is better than not being alive, don't you agree? If you stay positive, she will handle it much better. God Bless and keep us informed.

Linda_in_NJ · 04-23-2009, 12:01 PM

May God bless that little girl and give her and you the strength that is needed.
She will be in my prayers.

TheWig · 04-23-2009, 07:58 PM

Thank you for your pray's. She has been a trooper these last 3 days. Many many test have been done. Several hours at the hospital. The staff at the hospital is so good and kind. Tomorrow, she has the byopsy to see what stage the cancer is in. Hopefull (or maybe not) they will have some answer's for us. We still have not told her mother yet. Her mother is full of hate and still living a lifestyl of drugs and alcohol. She lives in a different state. I really don't know how she will take the news. We haven't told her yet because we are looking out for the baby. We want all of this to be as positive with her a possible. We dont want the mother to ?? the baby and upset her. The hospital told us that they have a councelor that can help us with this when we are ready. It's still going to be hard.
Anyway, thats everyone that has read this.
If anyone, anyone, has had a similar experience like this, please write and give us some advise.

Tim