Robbie and I visited one of Houston’s Art Museums this afternoon. It is a great museum with free admission on Thursday. We only visited one building today. We don’t normally come because of all the walking, but he is feeling good today. We walked from our apartment too, which is a few blocks away.
We visited the Science Museum and the Butterfly Center. It was very peaceful there today.
His bloodwork matches the clinical study, so now his tissue samples have been sent off to be tested to see if they are also a match. We will find out in 3-4 weeks.
Countdown to lung surgery in less than 2 weeks. We are all having problems sleeping. We are buying precious time with the surgery, but it isn’t a cure. From what we hear, it can be a rough recovery. He will have some tests next week before the surgery. Surgery is Monday December 11.
Other Clinical trials: Thank you to the people that have been researching and sending information. If he doesn’t qualify for the first study, we will look at all the alternatives.
Robbie and I spent a few hours at the zoo today. First we stopped at the Natural Encounters building, where we saw our favorite zoo keepers. They let Robbie go back and say hi to Curly the Sloth. They are so good to him! Robbie took several pictures and had a lot of fun. Since it has been a few weeks since chemo, he has a lot more energy.
I might complain about the horrible traffic in Houston, but the weather this time of year is beautiful. Robbie’s shirt says…All I Want for Christmas is More Sloths. 🙂
Jim and I took Robbie back to Brazo’s State Park today. We went hiking and we saw two alligators swimming in the lake. The weather today is almost 80 and beautiful.
It also would have been my mother’s 88th birthday today. I miss her so much. Here is a picture of Robbie with his grandma. She passed away just a few months before we found out that Robbie has cancer.
Robbie received an adorable sloth sweater and sloth calendar in the mail this weekend. Thank you to the people that sent him gifts. As you can see, you made his day.
Jim and I took Robbie to the Houston Thanksgiving parade. We took the METRORail downtown for the first time. I was just thinking that it would be an easy way for Robbie and I when we go into Houston, when someone very high on drugs started running around the train rapping about chainsaws. A great spot to watch crazy people!
The parade was nice and Robbie enjoyed it. We miss being with our family today.
Robbie and I went grocery shopping at HEB with along with the rest of Houston. I forgot about Thanksgiving. There was a huge crowd and a news crew. Total craziness!
We picked up our favorites and brought them back to our apartment. This blue wagon is one of my best Amazon buys this year. It makes bringing groceries to our third floor apartment from our car so much easier.
I hope everyone has a wonderful Thanksgiving this week.
I took Robbie to see the Thoracic surgeon today. We thought we were going to consult, but the Dr had already talked with Dr Ratan (Robbie’s oncologist) and they decided on lung surgery to help Robbie.
The Dr said he has completed 1,200 lung surgeries like he will do for Robbie. It is planned for 12/11/17.
He is going to remove the main cancer tumor, the tiny tumors, and anything else that looks suspicious. Recovery will take time. It is a lot to process.
We spent the morning at the Butterfly Center. The butterflies loved his red hat.
Do You Like to Research?
Long post, so feel free to stop here if Research isn’t your thing. Ha ha. You laugh… but I know I have very smart friends and family! ❤
Robbie only has a 50% chance of getting into the study called KITE- 718 at MD Anderson. More info at this link. https://clinicaltrials.gov/ct2/show/NCT03139370
There are many clinical studies/trials going on across the country. I made this post for my friends and family that like to do medical research.
You can help Robbie by looking for clinical trials/studies that might match. High priority for treatment being done in Houston. We are looking for back up plans, since the traditional treatments have been unsuccessful.
Where to research?
One place to research is online medical journals and another place that has a listing of all the trials is https://clinicaltrials.gov/ct2/home
Additional Medical information
He has metastatic osteosarcoma that is high grade and has spread from the original location (tibia) to his lungs with multiple lung metastases in both lungs. One lung is currently stable and shows no sign of active cancer. The other lung has been resistant to chemo and the main tumor continues to grow.
He just completed 6 months of doxorubicin. (the red devil) This drug is no longer effective.
Cisplatin was effective, but caused extensive damage to his ears and it is probably what damaged his bone marrow.
High dose Methotrexate was tried.
He can’t take multiple chemo drugs at one time, because his bone marrow was damaged the first time he fought cancer. His platelets never returned to normal.
Lung Surgery Research
Another area to research is lung surgery for lung metastases . There are different types. We are taking Robbie to meet a lung surgeon this week for a consultation. Just another option.
Lung Picture. Largest tumor is circled.
How to contact us.
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