Robbie went grocery shopping with me and tried to talk me into a gift for Ruth’s dog.
We are having problems with our insurance. They denied Robbie’s new treatment. It makes us all nervous for him to be without treatment. His Dr wrote a letter to the insurance company and called them. So far..no luck.
We put up an extra tree for Robbie’s sloths this year. Robbie and Ruth plan to add to it later this week when she visits. Robbie loved the sloth Christmas tree at the Aquarium, so we decided to make our own.
We are still trying to process all the information from yesterday. I have started recording all the major Dr visits, so we can listen to them again. Even his doctor was surprised how good he looks compared to what his scans are saying. It is so heartbreaking every time we get bad news. I was at work today doing the best I could, but my heart was at home with Robbie.
The PET scan results show the cancer is enlarging and spreading in his lungs😢. There is less fluid in his lungs.
Lung scans. Left-October, Right-Today
The Dr is going to stop the harsh chemo and switch to a new treatment. Strong oral chemo pills called regorafenib. It is a new drug and not yet FDA approved for osteosarcoma. Very expensive…16-18 thousand per month supply. We are waiting on insurance approval. He will have scans in six weeks to see if it is working. If not, they can look at the same chemo again or clinical trials. His Doctor recently attended a sarcoma conference, where he heard about the drug he is going to use for Robbie.
The guys Escaping MDA
His tonsils lit up less, so no tonsillectomy. Yay!!
His type of leukemia isn’t usually helped by chemo, so he will be on pills called Ibrutinib. He will be on other meds for the side effects. If he tolerates the treatment, then he will be on it the rest of his life, unless something else is found. It has a good success rate for people that tolerate it and don’t have severe side effects. The drug is new from the last two years for this cancer, so he is getting the latest treatment.
I am so thankful that he doesn’t need his tonsils out…at least for now. I am also thankful for the excellent medical care the guys receive at MDA.
I am praying that we will have a break from the hospital and the new drugs help. ❤
Waiting for Robbie’s X-rays and CT scans of his chest. Several other people have arrived now. Including one person loudly on her cell phone for several minutes now. Makes you miss phones hooked to walls in homes. She only stopped long enough to tell them her husband is out for a smoke, when he was called back for his lung X-rays.
We took Robbie to see the sloths at the Dallas World Aquarium today. The sloth is from the Sloth Sanctuary in Costa Rica. Robbie loved visiting the sloth. We were first in line, so he got to the sloth ahead of the crowd. I am so glad we took the time to take him. He loved the sloth Christmas tree in the gift shop, but was too tired to shop this time. He rested on our drive to Houston and continues to rest now that we are home.
I am very thankful we were able to take him on this trip. He is worried about his tests tomorrow, doctor appointments on Monday, and his next chemo treatment this week.
We left Oklahoma late afternoon. Robbie loved seeing his sisters. We stopped in Dallas overnight so we can take Robbie to the Dallas Aquarium tomorrow morning. He found a pink sloth at Cracker Barrel. He only got to hold it for the picture. I didn’t cave in to buy it this time. 🙂
We take Robbie back to MD Anderson on Sunday for tests and Monday for results. Jim will also. have test results on Monday.
Robbie and I had a great day today. After his bloodwork, we drove to Houston to The Kolache Shoppe and then the Butterfly Center. On our way home we stopped at Target to find the sloth ornaments.
His bloodwork is slowly coming back up, so his Dr is allowing us to travel to Oklahoma to see our girls. A couple weeks ago, his Dr was very hesitant to allow him to travel due to his low blood counts and breathing difficulties due to the fluid in his lungs.
Jim is having tests today to see if his tonsils have cancer too.