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.
Robbie’s sloth waiting for him to come back from bloodwork
I took Robbie to MD Anderson yesterday for bloodwork and to see Dr Ratan. What Robbie thought were bug bites are actually blisters caused by the chemo he is taking. So far only a few, but this can become a problem for some people. His blood pressure is up, which is normally very low….another side effect. His bloodwork so far is looking okay except his platelets have started a slow decline. We doubled his chemo drug and so far the only additional side effect is being tired. He will have scans the end of July to see if the new drug is working. Keep praying for him.
He received a couple cute birthday cards in the mail yesterday, which he enjoyed. We also visited the Museum of Natural Science after his doctor appointments. He didn’t last too long because he was so tired, but he had fun walking around by the dinosaurs. The museum was setting up tables and food for a big event. Robbie said he wishes he could rent the museum and have a party. I told him sorry, but that isn’t in the Birthday budget.
Robbie and I started the day at MD Anderson for scans to check for the progress of the current treatment. We are all on edge until we get the results tomorrow. I’m making Jim come along tomorrow in case it is bad news. Keep praying.
Next, we went to the Sherlock Homes exhibit at the Natural Science museum. It was an interesting exhibit along with a crime scene with clues and old techniques for figuring out the crime. A blood splatter machine, shoe stepping machine with different shoes, poisons, poison plants, and a variety of other displays. It was one way to keep our minds off Cancer for the afternoon.
We spent the afternoon at the museum between appointments. We had a wonderful afternoon together.
Tonight we are at MD Anderson for his next round of immunotherapy. They were supposed to start sooner, but it is after 6pm and they haven’t started his treatment yet. It takes at least 3 hours, so it is going to be a late drive home.
Robbie and I went to the Science Museum and Butterfly Center this afternoon. It was very crowded! He enjoying being there and mostly sat on the bench watching the butterflies. They kept landing on his red hat. He also received a new sloth in the mail today, which really made his day!
I took Robbie to the special exhibit at the science museum this afternoon. They have a great display of Knights and Shining Armor. Robbie took tons of pictures. Then his back started bothering him, so we left. I had his pain medicine along, but I forgot the water bottle.
We took off all his bandages yesterday. I told him that he looks like he got into a sword fight. He also has a smaller incision on his side from the chest tube.
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 went to the new exhibit at the natural science museum this morning. It is very colorful and I think it will be a big hit for kids. We enjoyed the quiet, since it is member preview day. Robbie brought his favorite sloth with him. The rest of the day we have spend hanging out at the apartment. We are all still processing the latest news.
Robbie and I hung out with the dinosaurs and explored the rocks on display at the Natural Science Museum today. It was a nice distraction from worrying about testing next week.
Next Wednesday Robbie will have multiple tests to check the status of his cancer treatment. A full body bone scan, lungs, and heart scans. The current drug is known to cause heart damage. His doctor will look at the results and meet with the sarcoma team to come up with the next plan of action to help Robbie. Pray for good results.