So many tears and prayers. It doesn’t seem possible that our sweet boy is so full of cancer. His Dr advises that he no longer travel out of state. Robbie is asking to visit Curly the Sloth at the zoo, so I will take him as soon as he recovers from his lung procedure. He is very tired from a day of tests and procedures yesterday. He had more scans today.
I am going to take a leave of absence from my job. I teach K-5 children with autism. I work with wonderful people and I am going to really miss them while I am out. I am thankful to work with such a great group.
My sister Terry is here and so is Lynn. Ruth is coming in a week.
Robbie has been having trouble breathing, so they did scans and found that his left lung was full of fluid. A lung specialist did a procedure today and removed 600ml of fluid from his lung. His color is already much better. He was looking very gray.
The latest scans show that his cancer is spreading quickly and his Dr doesn’t recommend additional treatment. He told us that Robbie only has weeks to live and recommends hospice.
Robbie is feeling miserable today. Back pain, head ache, fever, and breathing heavy. He had a chest scan this afternoon and we will get results on Thursday. I am worried about him and I wish there was something I could do to help him to be more comfortable.
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.