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Story from Donna

Mother of Shantelle (age 12 when diagnosed with osteosarcoma in her knee)

My daughter, Shantelle, was 12-1/2 when she was diagnosed with localized osteosarcoma below her left knee. That was in December of 2000. Chemotherapy (Adriamycin, Cisplatin, Methotrexate) started in January, and she had a limb-salvage done in May 2001. She ended up needing a skin graft to the tumor site nine days later, so we were in the hospital two weeks longer than expected. Chemotherapy should have started again within a few weeks after her surgery, but some skin around the graft site broke down and it took two months before it was healed enough for her to continue with chemo. She finished in December of that year. In May 2002, she had the growth plate in her other leg destroyed so that it wouldn't grow longer than her limb-salvage leg.

From a chest x-ray and CT scan in late September of 2002, it was determined that she had one nodule or abnormal mass in each lung. They were both removed by thoracotomies, a surgical incision of the chest wall, three weeks apart. Another regimen of chemotherapy (Ifosfamide, Etoposide) started in November. Her lungs have been clear since those surgeries and she is doing well now. She is now on a nebulizer treatment of GM-CSF to help prevent more lung metastases. ("Nebulizer treatment of GM-CSF" is an experimental treatment administered as a fine spray into the lungs to reduce lung metastases. It is a protein which is intended to stimulate a special type of white blood cell in the lung to attack tumor cells. This treatment is still in the research stage.)

Over three years after her initial diagnosis, Shantelle had a total knee replacement in February 2004 due to the allograft "shifting" at the knee joint. She's coming along very well now - just using 1 crutch which she hopefully will do without soon. The only concern following surgery is an area of skin on her knee (where the tumor was removed 3 years ago) that has lost circulation, but the dead skin should come off so new skin can grow in. Something similar happened after her limb-salvage 3 years ago and healed with time.

Shantelle also just had 2 more lung metastases removed from each lung (March & May 2004). Her next treatment will be oral VP-16, and she'll also repeat the GMSCF nebulizer.

Spiritual, family and group support. As far as emotions go...it is truly a rollercoaster! For us, our close relationship with God is the number one thing that gets us through the tough times. So many people have had Shantelle in their prayers since the beginning and I know that's the reason we've been able to deal with everything. We've also had lots of family that have helped us in so many ways- tending to my other two children, financial assistance, and moral support. The other important support we get is through Internet support groups. Shantelle is on an e-mail list for teens with cancer, and this has been a great way for her to talk with other teens who are having similar experiences. I'm on one for osteosarcoma specifically and that has been such a blessing for me! If I didn't have that group, I most likely would have never known anyone else with this disease. I've learned so much medical information and the emotional support is priceless.

Do the things you normally would do. I think the best thing for Shantelle's attitude was to continue with school, friends, cheering, and anything else she would normally do. She always said she didn't want to be treated different, so whenever it was possible, we kept doing all the things she wanted. It was hard though seeing her disappointed when she couldn't do something other kids were doing.

Learn as much as you can. My suggestion to anyone dealing with this (osteosarcoma) or any disease is to learn as much as you can about it. Doctors can only give you so much information and the more you know, the more questions you can ask.