Friday, October 14, 2011

What's next?

This is by far the most frequently asked question around here, so I thought I would take a minute to answer it the best I can.

The next step for Steven is that he will have all the scans and tests he has ever had. They will check for any signs of cancer (heaven forbid--that would be bad news indeed, but it is very unlikely since he just finished his chemo treatments.) They check for that with a bone scan, an Xray and a CT scan. They will do an echocardiogram to test his heart function. As I've mentioned before, the Doxorubicin chemo he had can cause heart problems--immediately or years down the road. His heart function will be tested yearly for the rest of his life. He will also have his hearing tested and for the next few weeks will have his blood monitered through regular lab draws.

Once he passes all the cancer tests and his bone marrow has recovered (that is what they are checking with the blood draws), they will schedule a sugery for him to get his port removed. The scan will take place sometime the week of the 24th of October and the port sugery will likely be the week after.

For the next two years, Steven will have scans to check for cancer every three months. After that, it goes to every six months until 5 years from now. Then he will have scans annually for five more years. So it is ten more years until he is considered truly cured. When I think of that, I must admit I feel a little overwhelmed. Maybe by the end I will be a pro at not freaking out, we'll see. It is hard to envision going through ten winters where every cough will scare me to death. (The CT scan they do is of his chest, because with osteosarcoma usually metastisizes to the lungs first.)

So far, this week has been hard. Like I said before, he's been back at school almost full time. He has made a major improvement from Monday to today, so I am feeling hopeful. Next week is fall break, so he only has a few days of school and he'll miss more days the next week for doctors appointments and scans. My hope is that by the end of the month, he'll have more energy and be more like his old self. I'm remembering my kids starting school in the fall and how grumpy they can be for the first week or so and he has had a super long break from school that hasn't exactly been fun. Plus, he's got legitimate physical issues and emotional stuff to deal with. It is a lot for a kid and so keep praying for him--he's got a way to go.


  1. Hey, congrats Steven! And you too, Sonja! You guys are fantastic. I love reading your blog. About fear of relapse--distraction has worked pretty well for me so far. Let me know if you figure out how to cope with the thoughts that hide out in the cobwebs. Keep us updated!

  2. Hi there :) I have been on this blog for like an hour now reading like half of it, and I just want to wish Steven good luck :) I have done a rotationplasty myself and I was like 10 when I did it so I understand exactly what Steven is going through. I have never actually had any kind of contact with anyone that have done this kind of surgery (I'm from Sweden and its not many people that have done it here) and I just felt I had to write this and wish him good luck. He has a hard time in front of him learning how to get used with his new "leg" but I have to say that after 7 years with a prothesis I cant actually remember how it was to have a normal leg, haha. Best Wishes, Marcus

  3. Marcus, thanks for leaving a comment. It is so encouraging to hear from someone who is making it. There are days that this seems so hard and slow. It helps to hear and see succes stories. good luck to you and thanks again!