MD Anderson Updates: Terminal Cancer 1/7/19

Waiting for his appointment

The current chemo drug is slowing the cancer down, but also causes multiple side effects. It is all the Dr has left to try, so as long as it helps and doesn’t make him too sick, he will continue.

Robbie continues to have cancer in his lungs, along with a new tiny tumor on his heart and liver. It all looks about the same as two weeks ago when he was in the ER, so his Dr thinks the new drug is helping.

Dr Ratan told him today that his cancer is terminal. He has mentioned this possibly to Jim and I, but this is the first time Robbie has heard this. It is devastating news. We are so sad. It is so frightening for him and all of us.

Robbie has beat the odds so many times. Keep praying for all of us. ❤

Test Results = Tears 5/31/18

First….a sweet child singing about Peace in Christ. Keep praying for a miracle for Robbie.

Sadly, we learned today that his cancer has continued to grow in his lungs and new tumors have started in both lungs. The immunotherapy that has helped so many people, had no impact on his cancer. The news is devastating to all of us, especially for Robbie.

They stopped the clinical trial and for now he will start taking a chemo drug that for some people has slowed the growth of new cancer, but rarely kills osteosarcoma. The drug is called Pazopanib and it is in pill form. It will take time to get insurance approval since the estimated cost is $10,000 per month.

They will do scans again in 6-8 weeks. At that point, he will either continue the new chemo drug or jump to something more toxic. The fear of jumping to another harsh chemo is that if it doesn’t work, it could destroy the rest of his bone marrow, taking most of the other options with it. This could be next in line or another clinical trial. Unfortunately the current clinical trials for osteosarcoma are mostly at stage 1, so they don’t have enough data to know if you are going down the right track or wasting time.

He has a wonderful doctor and nurses at the sarcoma center and they are also sad with the latest news. We spent over an hour together today as we talked about the latest tests results and what possible steps ahead.


Matthew 19:26 New King James Version (NKJV)

But Jesus looked at them and said to them, “With men this is impossible, but with God all things are possible.”

MD Anderson Updates 2/8/18

Robbie zip lining on our last trip.

We received several updates today.

The Good news first: The lung that had surgery is currently not showing any cancer activity. There isn’t any cancer activity anywhere else in his body beyond the lung that didn’t have surgery. Slow tumor growth in the tumors in the other lung and an additional tumor. The downside is for the amount of chemo since last June, you would hope for no living cancer.

Bad News: His doctor continues to think his cancer is terminal. This is the first time Robbie has heard the doctor say this and he is understandably concerned and upset. We keep hoping that there will be a breakthrough with a new treatment. Who really knows what is ahead for any of us.

Current Plan for Treatment: Robbie didn’t qualify for the clinical study. His Dr will monitor Robbie and scan monthly for cancer. When his tumors become problematic or a certain size, he will put him into one of the other trials and/or lung surgery. His doctor’s goal is quality of life. (since treatment makes Robbie very sick) I’m on the fence on whether I think the “wait and see” method is best, but I do agree that quality of life is important. I also don’t want to do anything that will cause more harm than good. I need to do more research.

We are not giving up as the fight continues. We really appreciate everyone’s support. ❤