Cari's Story

Cari and Her Husband

Cari was 28 when she was diagnosed with osteosarcoma at the tibia. She had chemotherapy and surgery, followed by lung metastases and a local recurrence that resulted in amputation. She also had a baby after chemotherapy!

I actually knew I had a tumor in my leg, because when I was 12, I cracked it while I was running. The specialist at that time said that it was benign and not to worry about it, because something that is benign would not turn malignant. So life went on. In January of 2003, my shin and knee were extremely swollen and I began to have daily pain that would even wake me up at night, but being the stubborn person that I am, I didn’t actually go into the doctor and complain until June 2003. Eventually I was referred to a specialist who (in August) said the best thing to do was a biopsy so we would know what we were dealing with.

A week after the biopsy I was told it was high-grade osteosarcoma. I was actually told on a Friday and by Monday I had an Oncologist, was in the hospital on Wednesday having a catheter placed in my chest and was to report on Monday morning for my first round of chemotherapy. The first day of chemo was September 19, 2004. WOW what a week! The initial tests done were an MRI, CT scan, Bone Scan and many different X-Rays. It all happened so fast – I actually don’t know how I handled it.


I had seven rounds of chemotherapy before surgery. The chemos were Doxorubicin, Ifosfamide, high-dose Methotrexate with Leucovorin rescue, and Cisplatin. I had about three weeks off before surgery so I would have enough strength to make it through. Surgery was on January 6, 2004. I had limb salvage surgery which consists of inserting a titanium rod into my femur, taking out my knee and replacing it with a prosthetic knee and removing my tibia and in it place titanium rod. I was in the hospital for seven days, pretty much drugged and was not allowed to bare any weight on my leg until March.

Two weeks after surgery I reported back to my oncologist for the next 13 rounds of chemo. They were the same drugs as listed above plus Etoposide. Out of the 13 rounds I was supposed to have, I only had five because my body would no longer recover after each treatment. My blood counts would remain too low and the risk of infection was too great, so my doc and I decided we would have to take the chance and end chemo. My last chemo was June 23, 2004.


I had CT Scans every three months for the first year, then went to every six months, and then I was about to make it to once a year when my scan done in February 2007 showed a spot on my lung. My Oncologist was hopeful that it was nothing because by this time I had 3 years without any signs of mets or recurrence. So he decided to wait and do another scan in a month to see if there were any changes to it. In March I had another CT scan and found out the "spot" had doubled in size. We still didn't know what we were dealing with, but the consensus was to have it removed. So in March of 2007, they removed the bottom half of my right lung. Three days later I got the call that it was a met. Since that was the only one we were dealing with, we decided that surgery to remove it was the only course of action to take at that time.

Marriage and a Baby...and Recurrence

In October 2008, I married the man of my dreams. I never thought that someone would come into my life and want to deal with all the things that sarcoma brings, but not only did he come into my life and I married him, but we also found out we were expecting a baby. Cari and Her FamilyMy Oncologist was shocked to say the least, since chemo I never had a menstrual cycle so we just assumed I was pre-menopausal and that pregnancy would not be in my cards. So not only was my oncologist surprised, but it took seven positive home pregnancy tests for me to even begin to think that it was true. My beautiful baby boy was born February 21, 2009 by C-Section. I had such little use of my knee that my OB and Surgeon both thought that a C-Section would be the safest for me, because they didn't think I would be able to get into a position to actually push him out.

Before I left the hospital after having my boy I had a CT scan because I wasn't able to have any during the nine months. I found out two days later had another met. In March 2009, I went in for the removal of my middle lobe of my right lung. The surgery was tough, but honestly being away from my newborn baby for the four days I was in the hospital was the WORST!!! I couldn't think of anything else except for getting out of there.

Once discharged from that surgery I was to report to my lung surgeon, so he could do a needle biopsy of this funny bump that was growing out of my ankle. Two days later received a call that it was a recurrence of the high grade osteosarcoma. The only option at this point was to do an above-knee amputation. So, in April 2009, I checked back into the hospital and had my right leg amputated above the knee.

Ongoing Recovery

I have had MANY years of physical therapy, initially to help with the lack of movement with my knee, to help strengthening my back (because of the way I walked my back has some issues), then to help with the use of a prosthesis. I still see a physical therapist to help with my back and to try and help my gait, so hopefully someday I will learn to use my legs equally instead of placing on my weight on my left side. It has been eight years of favoring the right leg, so it has taken me awhile to learn to use it again.

Life Now

"Since my diagnosis I have learned that my body will continue to surprise me in so many ways. I have learned that even though a doctor might tell me something, there is always another side to it. And I have learned that miracles do happen and good things can still happen in my life."

Things are definitely different now. I can’t say in a bad way though, just different. I miss things that I used to be able to do like playing volleyball, jumping or walking, running, crawling and squatting. I still have trouble using the prosthesis, so normal activities take me awhile. I walk slower, I get tired very easily and I have a lot of anxiety when I am on terrain that I am not familiar with. I don't like walking down hills; climbing is very hard; walking on sand is hard; daily activity is HARD. But I have learned so much more about life. I enjoy friends and family. I listen to friends or family complain about things that now I feel are just not worth thinking about. My focus is my boy who is three now, and I try to do everything that I can to make his day happy.

I still suffer from nerve pain and phantom pain and have days when I am really just ready to give up. I get so discouraged and depressed when my son is running around the grass playing and I can't join him. It breaks my heart when he says, "Mommy you get me now," and I have to say, "Sorry baby, but Mommy can't run after you." I try not to let those days overwhelm me because I could very easily just sit and cry all day. I do what I can do, I am ALIVE and I am very thankful for that, and I am able to see my son grow, laugh and love. That is something that I thought I would never experience and now I have the HONOR to be there every day for him. He always makes me laugh, especially when he tries to fix mommy's leg (I think he is going to grow up and be a prostheticist.)

Thoughts for New Patients

Just take each day as it comes. I thought that once I knew what to expect from the chemotherapy that I would be able to plan for it each time I had a repeat. But the more chemo I had the more different my body would react to it. I would never know what to expect (in my situation), even though it was the same chemotherapies and the same doses. At the beginning I tried to be "strong" and fight through the nausea, vomiting, fatigue and all the other wonderful side effects, but then I realized there is no reason to fight through it. TAKE MEDICATIONS to help RELIEVE THE EFFECTS!!! If one doesn’t help, ask for another. I definitely ended up with my favorites!

I also learned to listen to my body. If I was tired, I slept. If I was hungry, I ate. The best thing is try to eat healthy, but in my case healthy foods would just make me sick. I always craved McDonald’s cheeseburgers and Taco Bell Tacos, so when I was able to eat, that is what I ate. It was better to eat something instead of nothing, so let your body tell you what it needs. And probably most important: talk to your doctors, feel comfortable with them, you see them a lot. Ask questions and get answers. Have a way to contact them (and the chemo nurses too) -they become a huge part of your life, and mine still are!

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Astrid 05/11/2013 08:26 am
Cari, you are so brave. I live in Germany and I got the diagnosis chondrosarkoma in 1992. I was just 23 years old then. In a big operation my sternum was replaced with metal plates. Chemo did not make sense and so after the operation it took a while to get back on my feet. They took bone mark from both sides of my hip to cover the metal. It took me 21 years to find another person with the same disease. A brave man in Bavaria started a blog on the internet when he got the diagnosis. He did not make it and the followers of his blog still cannot believe he did not survive and he was such a fighter. It was good to read that you do not give up and you little boy is so sweet. I have three boys all born with a Cesarian because of my metal sternum. Now I was trying to find out more about people with a sternum replacement and stumbled across this website. It shows me that I am not alone. I send you all my good thoughts, Astrid
Teenikka Mathis 31/10/2013 06:59 am
Hi cari my daughter was diagnosed with osteosarcoma at the age of 11she is 12 now and towards the end of treatment at diagnosis it had already spread to her lungs she has been doing very good and I pray everyday we beat this she still has her whole life ahead of her if I could take her place I would thanks so much cari for sharing your story you gave me so much more hope teenikka mathis
Michelle Jacob 11/07/2013 01:06 am
I was diagnosed with stage IIA osteosarcoma September 9, 2012. I had chemo for two months before my surgery. I had my femur cut half way up and my knee removed and part of my tibia cut. I had the rods and a prosthetic put in also. I've had a hard time with chemotherapy also. When January came, and I was back doing chemo, I noticed my ears ringing from the cisplatin. The doxorubicin and cisplatin made me so nauseous and weak. I was so sick one week, I fainted after vomiting and tore a muscle in my quad of course on my bad leg when I fell onto the floor. That has made trying to move my leg so much more harder... The high dose methotrexate and lukovoren too make me tired and weak, sometimes nauseous more than others. I too have a son, he was seven,turned eight during these past few months. I miss everyday not being able to play the way I used to. I get so depressed because I feel like I am failing as a mom and wife. But when I get sad, I just thank god that I'm here now, and love my son and husband with all my heart. I make sure I hug my son at least twenty times a day and tell him I love him! I don't ever want him to forget, and it cheers me up when he tells me how much he loves me. Everything I do is for him and my husband. I just push myself and think, I want to see him graduate high school, college, get married, be a grandma, etc.... Hopefully I will be here for all of that. I totally get what you went thru, and I wish you all the best of luck with your recovery, remission, and you too will get thru every day thinking of your son. His love will get you thru any bad day. Just believe and have faith in yourself!
julia 14/02/2013 12:14 am
thanks for your journey. I just found out my 19 year old daughter has osteosarcoma, she starts chemo tomorrow. My prayers are with you. God bless and keep you and your family
kelly hubbard 14/01/2013 01:02 pm
Your story was inspiring. My son Kelly Jr.was diagnosed with neuroblastoma at 18 months old.He beat that cancer only to be diagnosed with osteosarcoma in 2005.Had limb sparing procedure done but the body rejected it after a year.He ended up having a procedure called rotationplasty.THE Osteo came back in 2008 this time in the lungs. Chemo and surgery and back in remission. the osteo came back again in the lungs 2012.No chemo just surgery.He has exceeded the amount of the chemo drugs. All this in just 22 years of life. Your brave story just reminded how remarkable my son is and I pray that you and my son remain cancer free.

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