In this picture the nurse practitioner is pointing to the area of his lung that has fluid. They will watch his lung and said it is not unusual after lung surgery.
First the Good news... Robbie is cleared to travel next week to Costa Rica with few limitations. This is something we worried we wouldn’t be able to pull off and we are very grateful to everyone that helped with his Bucket List.
The lung doctor was able to get clear margins around the tumors he removed…meaning he removed all the cancer in the lung that he found. All great news! His doctor also told Robbie that he thinks of him every time he sees or hears about sloths. So sweet!
Bad news: Unlike his leg tumor that was 98% necrosis (dead), his left lung tumors were only 5% necrosis or 95% viability (living).
What I interpret from this report (which is like reading Greek) is the chemo had limited impact on the cancer. They are holding off surgery on the right lung for now. The dr said it is because the tumors are smaller and he doesn’t want to miss any when he does surgery.
We will see Dr Ratan after the trip. He will do additional testing and he is great at explaining everything. As my friend would say…”Just keep swimming”…
Robbie had a day of appointments at MD Anderson. Most appointments were check ups for his lung surgery.
Updates from Robbie’s Dr.
His Dr will wait until Robbie heals from lung surgery and goes to Costa Rica in January before Robbie will have additional tests and treatment. He wants Robbie to be healthy enough to travel.
Study: Still waiting to hear back on the study.
Surgery. The doctors decided to have the lung surgeon only remove the main tumor and leave the smaller ones that haven’t grown and are not as active. We also learned that the surgeon is the head of his department and well known.
We visited the Science Museum and the Butterfly Center. It was very peaceful there today.
His bloodwork matches the clinical study, so now his tissue samples have been sent off to be tested to see if they are also a match. We will find out in 3-4 weeks.
Countdown to lung surgery in less than 2 weeks. We are all having problems sleeping. We are buying precious time with the surgery, but it isn’t a cure. From what we hear, it can be a rough recovery. He will have some tests next week before the surgery. Surgery is Monday December 11.
Other Clinical trials: Thank you to the people that have been researching and sending information. If he doesn’t qualify for the first study, we will look at all the alternatives.
I took Robbie to see the Thoracic surgeon today. We thought we were going to consult, but the Dr had already talked with Dr Ratan (Robbie’s oncologist) and they decided on lung surgery to help Robbie.
The Dr said he has completed 1,200 lung surgeries like he will do for Robbie. It is planned for 12/11/17.
He is going to remove the main cancer tumor, the tiny tumors, and anything else that looks suspicious. Recovery will take time. It is a lot to process.
Last night after having a long day, we took Robbie to see the Houston Zoo lights. They have the zoo decorated with lights and Christmas music playing for the next few weeks in the evenings. There was a huge crowd. We arrived feeling down, but quickly got into the holiday spirit watching all the people happily going through the zoo and listening to cheerful holiday music.
Yesterday was upsetting. We really hoped and prayed that the other lung would respond to chemo. He has a 50% change of getting into the study. We won’t know for a few weeks. We really appreciate everyone’s support, it helps us through the rough days.
Robbie and I need to start making plans for his time off chemo. He loves going to the larger parks with trails, so I’ll have to see what is in driving distance from us.
They called us to come in early, which sent my anxiety sky high!
His lung tumor is slightly larger and it continues to be active cancer. He will have a month off from chemo to allow his blood counts to recover. They haven’t received the final results on the PET scan yet to know how much the tumor has grown.
Robbie signed paperwork for testing for a clinical trial with immunotherapy. He has to meet qualifications or they will do a different treatment. They will test his tumor and bloodwork to see if he matches the study.
Robbie will also meet with a lung surgeon to see if he qualifies for lung surgery to remove the tumors.
Robbie and I are spending the day at MD Anderson for a day of tests.
The tests today include: A Heart echo to check for damage from the chemo, X-rays of his chest and legs checking for tumors and checking status of his leg. Bloodwork to see if his counts are coming back up. Finally a PET scan, which is a full body scan with IV contrast that lights up areas of cancer. The PET scan takes a couple hours. He can’t eat today because of the PET scan and that test isn’t until 4:30 today.
No one slept well last night and I doubt we will tonight either. If the cancer is spreading or the chemo drug shows more heart damage, it will be crossed off a very short list of drugs that work against osteosarcoma. If they decide to continue the current drug, the greatest risk is congestive heart failure. He already has some heart issues due to Marfan Syndrome.
Robbie’s doctor will go over his results and possible next plans on Thursday afternoon. I’ll post when we find out the results.
Thank you for all your support. ❤