Clinical Trial Decision 7/31/18

The picture is only an example and not the same trial. We are having a difficult time deciding on the clinical trial. We learned more information today and it would involve more than one hospital stay, including one for at least three weeks. They would have to bring his body down to very low blood counts before putting the cells back into his body. There isn’t data on the percentages of people that have been helped with osteosarcoma. The first person at MD Anderson is just starting the trial.

https://clinicaltrials.gov/ct2/show/NCT03449108

On the other hand the chemo that is the other option (Etoposide) is known to cause low blood counts and the possible need for transfusions and hospital stays. It could also make it so he wouldn’t qualify for any additional clinical trials due to low blood counts and additional damage to his bone marrow. It is known to work with osteosarcoma.

MD Anderson Updates 7/30/18

Although the growth of his tumors slowed down with his current daily chemo, the tumors are still growing . The largest tumor in his lungs is about two inches. No new tumors this time. Dr Ratan has three different treatment options and he said all options have pros and cons. We are waiting to hear about a clinical trial called TIL. He will have to have multiple tests to see if he qualifies.

Meanwhile he has to go off his current chemo drugs because the clinical trial needs him free of medicine. We plan to talk with the clinical trial nurse tomorrow to learn more about the study. We are looking at this over the other chemo treatment because once that chemo is used, his bone marrow will probably be too damaged to try anything else, so our thought is to try the clinical trial first.

We feel mixed on his appointment today. We were hoping he could stay on the current chemo drug longer before changing treatment. It is also hard to see the choices for treatment less each time. We were thankful that the tumor growth slowed down and there weren’t more tumors this time. Robbie is exhausted from his day. We are also thankful for Dr Ratan. He gives Robbie as much time as he wants and takes an interest in his photography and adventures outside of MD Anderson.

Thank you for your support. ❤

Family 7/29/18

Robbie, Lynn, and Josh

Chris, Sandy, friend Sherri, & Terry

Sarah and my great niece Nora

My three sisters came to visit this weekend. It has been great to see them.

Robbie’s sister Lynn got engaged to Josh. We are so happy for them! ❤

Tomorrow we get the test results for Robbie.

Museum and Company 7/19/18

I took Robbie to Houston’s Natural Science Museum and Butterfly Center today. His friend is here for a few days. They went to the University of Tulsa together. The boys had fun exploring the museum. We noticed a giant sloth in the dinosaur area today, that we have missed in all our trips. He also had fun taking pictures of butterflies. We had planned a quick trip to the zoo too, but Robbie was tired and it is so hot out today, that I really didn’t want to go either.

The end of next week he has his next set of scans. I’m glad we kept busy today. Yesterday I had too much time to think about it, which wasn’t a very productive idea.

Dallas Art Museum 7/14/18

In the afternoon, Ruth, Nick, and I took Robbie to the Dallas Art Museum. It is a great museum. I’d like to go back sometime and see the areas that we missed. We also drove by the famous grassy knoll, but we didn’t have time to stop at the Kennedy museum.

It has been a great escape this weekend. Tomorrow morning we will drive back to Houston.