The current chemo drug is slowing the cancer down, but also causes multiple side effects. It is all the Dr has left to try, so as long as it helps and doesn’t make him too sick, he will continue.
Robbie continues to have cancer in his lungs, along with a new tiny tumor on his heart and liver. It all looks about the same as two weeks ago when he was in the ER, so his Dr thinks the new drug is helping.
Dr Ratan told him today that his cancer is terminal. He has mentioned this possibly to Jim and I, but this is the first time Robbie has heard this. It is devastating news. We are so sad. It is so frightening for him and all of us.
Robbie has beat the odds so many times. Keep praying for all of us. ❤
We left our house at 5:30AM for Robbie’s tests at Anderson. When we arrived, the line was out into the hallway and the person checking people in was painfully slow. After 45 minutes, Robbie finally got to check in. She was like the sloth in Zootopia.
After his tests, he was exhausted, but since he has been talking about the Butterfly Center, I talked him into going. My thought is that you can feel bad at home or while watching butterflies. He was too weak to use his camera and too weak to stay very long. I went to their guest services and a nice young man got a wheelchair for us and wheeled Robbie to our car in the parking garage. He also was a sweet tour guide as he walked us through part of the museum on our way out. I was mad at myself for thinking this was a good plan. He slept all the way home and looks better this afternoon.
Robbie texted me today while I was out running errands. Mom…Here is a picture for the blog. Robbie with his 3 largest sloths. Love him so much.
He continues to be very weak, but is awake more and is complaining less of his back. He is breathing heavily when he walks, which frustrates him because there is so much he would like to do.
Tomorrow morning he has scans of his chest and bloodwork. Why they scheduled him at 6:25AM, I have no idea. We thought about getting a hotel near Anderson, but decided we will just get up early. We live 45-60 minutes away from the med center.
Ruth and Lynn left for Tulsa. They took a picture with Robbie before they left. I am thankful they were able to spend a week with us.
Robbie’s face has cleared up, but he is still covered in a rash and sleeping a lot. Today he will take his chemo drugs again to see if the rash gets worse or the rash is something else. We were at the ER until 7:30 last night and then an hour drive to Katy.
Some of his bloodwork was off yesterday. He had low phosphorus again, so they gave him an IV supplement and high lactic acid. We found out that is the reason for flooding him with IV fluids and doing an EKG. By the time we left, his lactic acid levels had gone down. They told us he would have been hospitalized if his levels had stayed high. More questions for his main Dr next time.
We brought Robbie to the ER at MD Anderson this morning and they have admitted him. He has a fever and low phosphorus. He is being treated with IV antibiotics. They ran blood tests and took a lung X-ray. They will decide tomorrow if he needs to stay longer or can continue with treatment at home.
I have family pictures booked later this week, so hopefully that will still work out while everyone is home.
Jim and Robbie went on their own to their appointments today. Jim can start his medicine now and his glands should start to have less swelling after a couple weeks.
Robbie is still waiting for his medicine and the drugs for his side effects are at Anderson, but the guys forgot to pick them up again. His scans show his tumors continue to grow in his lungs. I hope his new medicine comes soon! Nothing new on his leg. He saw his surgeon today for a follow up appointment. One of the nurses gave him a new adorable sloth. They are so good to him.
I have a new great niece. She was born over the weekend to my nephew’s family that live near us. I can’t wait to hold her. I have a cold, so I have to wait.
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.