How We Got Where We Are....

It all started back in July, 2008. My son came to me and said "Mom, my shoulder hurts".....I asked if he would like to go to the doctor and he said no, to get him some Ben-Gay and some Advil and we'd go from there. So, he tried that for a week, and nothing, no relief, no anything. He then went to our family doctor who took an X Ray, didn't see anything and gave him a cortisone shot in the shoulder and ordered an MRI. He couldn't do the MRI due to it being closed, so we appealed to the doctor to write another script to get him into one of the local hospitals which has an Open MRI. After 3 weeks, the doctor finally signed off. In the meantime, my son was still in quite a bit of pain and I made an appointment at an Orthopedic Surgeon's office, but he couldn't get in for a couple of weeks. He had the MRI and I had the results sent to both doctors.

I began investigating this on my own and playing "Internet Doctor". A sinking feeling overtook me as I was looking conditions up, it pointed to a tumor and it was cancer and I knew that's what it was. The Orthopedic doctor more or less confirmed it. He took his own X Rays which showed a large white shadow on the shoulder (humerus) and the Radiologist's report from the MRI which suspected a "neoplasm" and a possible "synovial sarcoma". The doctor kept saying he did not know what it was and he couldn't help us, but he would get us over to the doctor who could, but he was being very evasive about what it was. I could tell he was very concerned about my son, and when he told us "Don't hesitate to contact me if there is anything I can do for you", I knew it was bad.

I went home and looked up the doctor online and it was an Orthopedic Onocologist that specializes in "muscularskeletal tumors" so it confirmed what I had dreaded all along....my son has cancer.

When we got in to see her the next day, she confirmed it was "Osteosarcoma" which is a bone tumor. It typically happens with younger people 15-25, typically males and it begins at the long end of the bone during a growth spurt. 70% of the cases are in the knee, another 10% in the humerus and the rest are in either the pelvis, hip, jawbone, etc. She did tell him he may not make it. I will never forget that moment...my whole world felt like it was closing in on me...for my son to have cancer, it was unthinkable...it had to be some sort of a mistake, even though in my heart, I had known he had it even before he was diagnosed. It was just a sureal moment in that I could not fathom that this was happening to my child....my beautiful son who everyone loved and cherished. He was admitted to the hospital from her office to begin his journey into the world of cancer.

The next week and a half was a blur...there were CT scans, PET scans, bone scans, a biopsy, a Mediport put in, doctor's consultations and finally the dreaded chemo....a cocktail of Cisplastin and Doxarubin......they decided to keep him under the adult side of the chemo rather than the pediatric side. Everything was explained to him; the sickness, the nausea, hair falling out, throwing up, all the "possible" side effects. Some he got, some he didn't...

He was admitted for 4 cycles and actually came through it ok....the one thing we noticed was that the huge mass in his left shoulder was not going down and it was painful, very painful. He constantly rubbed it and took hoards of pain meds.....then the MRI was done again, and scans repeated....the tumor had only gone into "necrosis" by 20%....(killing the tumor)......there really was no choice but to amputate the arm...a forequarter amputation which would also take his shoulder, scalpula, etc. It was his decision...and I was never so proud of my son....the doctor turned to me to ask me, and I said "Well, it's really his decision" and he replied to the doctor "Yeah, I can do that".....just as he always did with everything he had encountered, always willing to take the challenge, always willing to make the best of a bad situation...that's my son.

The day of the surgery, he was angry, frustrated...he didn't want to go....can you just imagine how you would feel knowing you had to go to a hospital to have your arm taken off? As we sat in the waiting room, I told my son how proud I was of him, and how he had handled this whole thing with bravery and courage.

The surgery took 2 and a half hours...the doctor came and talked to us and said he made it through great...when we went up to his room to see him, he asked us all to leave, and to leave him alone....my heart broke...how hard this must have been for him to go through..and how he didn't want us there...I wanted to comfort my son...it's difficult for a mother not to be able to do that, but we had to respect his wishes.

The next few days, he was quiet but ok.....there were appointments with the prosthesis people, etc.

He now has his prothesis and will be going for PT/OT soon...

There has been one cycle of high dose methodextrate and he'll be going for another in a week...

We are scared though, he has been having severe hip pain on the same side where he received the prosthesis.....we took him back to the Orthopedic Onocologist who took her own X Rays, did not see anything but ordered an MRI to be on the safe side. We see her this Thursday to go over the results. I'm scared, very scared...I pray it's not another bone involved..

Why did this happen to my son? This cancer is very rare; only 400 cases diagnosed a year. I was always worried about my son...he was at a job he didn't like and it got increasingly difficult for him to do it. He had been having pain in the shoulder since March, 08, but did not come to me until 7/08....he told the doctor he "had waited too long".....which broke my heart...had I been able to prevent it if I had known?

Everything happens for a reason. I asked my priest...why did this happen? No one knows...it the grand scheme of things, these things happen for our salvation..whether it be mine, his, my husband or my daughters....we don't know. I have been praying to God to heal my son.

More later........................