Robbie has Pneumonia 8/16/18

Jim spent the day at the ER at MD Anderson with Robbie. They thought they would have to admit him, but after spending the day running tests, they decided to sent him home with meds. He has been running a fever, cough, and has been sleeping a lot.

It was hard to be at work today.

Matching Scars 8/8/18

Robbie will get a matching scar next month when he has lung surgery again. I always have a hard time when I know he is going to have surgery. I hate to see him suffer and we know this isn’t a cure. The lung doctor is outstanding and I have confidence in his skills. I just need time to process the change in plans. He was in the hospital 3 or 4 days when he had surgery in December. I will take off two days and then we will have a weekend. Jim works from home, so he will be with him as he recovers. I wish I could be there too.

MD Anderson Update 8/7/18

Saw this sloth at Target.

Jim took Robbie to MD Anderson for multiple tests today. He also met with Robbie’s lung doctor. He will have lung surgery on September 6th. He will remove all the tumors in his lung. The tumors will be used by the clinical trial team. It will be a lot to go through and the recovery will take a few weeks. He had the same surgery on his other lung a few months ago.

Day at MDA 8/1/18

We spent most of the day at MD Anderson today. We talked with a few people about the clinical trial and got opinions on what to do. Robbie decided to do it even though it will be very intense with a lot of procedures, doctor visits, hospital time, along with heavy treatments. All this with no guarantee of success.

The study is only allowing 10 osteosarcoma patients along with melanoma, and cervical cancer patients. Melanoma has had about 30-40% success rate. They are hoping it will help osteosarcoma, but there is no way to know.

I pass the baton to Jim. He will have to take over appointments. Today was an optional training day at my new job, so I spent the day with Robbie. Tomorrow the rat race begins. I’m still in denial and that I’m returning to work.

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. ❤