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.
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. ❤
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.
Lynn went with Jim to the Dr today. Jim is in stage 3 Leukemia called CLL. He will need either chemo, then chemo pills or just the chemo pills depending on the tests they ran today. He has to have a biopsy on his tonsils because they also lit up to see if they have cancer too. If his tonsils are okay, then he can be managed with the chemo pills, so more waiting to know the next steps.
Robbie continues with chemo in the hospital. Lynn is with him tonight.
Needless to say it has been a long day. I thought I would be okay to go to work today, but I should have gone with Jim. I spent the day worried about him and Robbie. Then I got bit by one of my students on my upper arm, which was very painful. At that point, I fell apart and shed a few tears for the day.
Jim took Robbie to the Pulmonary specialist today. They learned that a few weeks ago when Robbie was so sick that he had one lung that was full of fluid and basically collapsed and the other lung had some fluid. Now after three rounds of the latest chemo, the fluid has gone down significantly.
What I didn’t post was the last PET scan results because it was so depressing, especially after the X-ray looked like he was stable, then the PET scan a few days later showed the cancer still growing in one lung. This looks to still be true, but with much less fluid and the cancer in some areas are shrinking.
Robbie and a couple of his sloths today. We just got back from MD Anderson. Dr Ratan said from the CT scan of his lungs, Robbie appears to be stable. The tumors and fluid in his lungs look about the same. He is waiting on the PET scan to know for sure.
Robbie will start the 3rd round of chemo (Ifosfamide) on Monday in the hospital at MD Anderson. We are thankful he is stable! His cancer has been growing fast the last two months. Even after the first round of Ifosfamide, his tumors continued to grow. Robbie is also coughing less and breathing better.