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.
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.
Robbie got a sweet card from a friend this weekend. He has been resting from his week and sleeping a lot the last few days. Appointments always take a lot out of him.
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.
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.
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.
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. ❤
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.”
Here is a picture of the kids playing in the snow when we lived in Iowa. Robbie spent most of today sleeping. He has been running a fever and doesn’t feel very good. His side stopped hurting, so that is good. Any pain that he has, we worry about the cancer spreading. The week of treatment is hard on Robbie and all of us. Thankfully, he always amazes us how he bounces back. I noticed today that he is really looking thin even for Robbie. He has been steadily loosing weight, since he started the immunotherapy.
Thank you for all your support. ❤
Robbie spent the afternoon at MD Anderson in Katy. When he was done, I stopped for treats.
He is feeling sick tonight and is complaining that his rib hurts on his side.
I’m off to visit my new school tomorrow. I’m excited and nervous. I hope to learn more about my position and what age group I will be teaching.
Robbie got some much needed sleep while he received IV fluids this afternoon. We should all get more sleep tonight.
We will definitely need a back up plan for the next round, so if it runs late, we will either have Jim along or stay in a hotel overnight. I can’t trust myself to stay awake after 11pm to drive across Houston to Katy.