MDA Updates

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.

Chemo Drug is Finally Approved! 12/6/18

After a couple weeks of waiting, the chemo drug is finally approved for Robbie. I am grateful to his Dr for calling them, then writing an appeal letter, and when that didn’t work, he sent another appeal letter along with additional information to finally get his medicine approved! Now we have to wait for our insurance to fill the prescription at one of their pharmacies and ship it to us.

Robbie is sleeping and resting often. Praying the new drugs come quickly and can kill the cancer.

Houston Zoo 12/2/18

Ruth and Robbie

Curly the Sloth

Robbie feeding Curly

We took Robbie to the Houston Zoo this morning.

The zookeeper we know was there and she let Robbie fed Curly, which made him smile.

He was tired quickly, so we left after visiting the sloth. He laid down in the back of the car and rested on the trip back to Katy.

December 1st

Robbie and his Sisters 1998

Robbie rests most of the time. He is still run down from all the chemo. He made pulled pork in the crockpot today, which is one of his favorite foods to make.

Keep praying the insurance will change their decision and allow his new chemo treatment.

Insurance Issues 11/30/18

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.

Sloth Christmas Tree 11/27/18

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.

We appreciate all the prayers and support. ❤

MD Anderson Updates for Robbie and Jim 11/26/18

Long wait today!

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

Jim:

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. ❤

At MD Anderson 11/25/18

HWY 10 6:30AM Sunday

Houston Early Morning

MDA Waiting room 7AM

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.