Robbie had a biopsy on one of the tumors in his lung today. He did well. He was asleep most of the day. They finally let us leave the hospital at 6:00 tonight. Lynn and Josh spent the day with us, which really helped!
We have to go back tomorrow for tests on his heart. I’m not sure if there was a problem with the first heart test or if they didn’t do the test correctly.
Cards and packages ❤
Thank you to everyone that has been sending cards and packages. You are really helping him through a rough time. We are so thankful for your kindness!
More lung updates/ Clarifications
I only posted part of the lung report yesterday. The rest I wanted to clarify from his oncologist first. I was going to wait until we see him in a few weeks, but after a sleepless night, I decided, I would contact Dr Ratan today.
They mentioned in the report that they removed a rib and listed the size, color, and it was sent to pathology. They had it listed with the other tumors and wrote that it is “grossly unremarkable”… My mind started racing with the worst possible scenario and so did Jim….hence our restless night. Why did they remove it? Did it look cancerous? Is the cancer spreading? Spreading back to the bones is even worse than the lungs for prognosis.
Well…the rib was removed as part of surgery and there isn’t cancer in his rib and they didn’t expect cancer either. I told Robbie, the surgeon needed one of his ribs to make a wife for him.
Then I wondered if the tumors are 95% living, does that mean, we put our child through months of chemo for nothing! The response was that the chemo did kill some of the tumors, but the remaining tumors were resistant to the chemo.
Afternoon at the Zoo
We spent the afternoon at the zoo. Their sloth is still sick, so we walked around the cat area. Robbie had fun taking pictures of the jaguar, tiger, and lion. It was peaceful and quiet there today. Just what we needed!
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”…
I took Robbie to the special exhibit at the science museum this afternoon. They have a great display of Knights and Shining Armor. Robbie took tons of pictures. Then his back started bothering him, so we left. I had his pain medicine along, but I forgot the water bottle.
We took off all his bandages yesterday. I told him that he looks like he got into a sword fight. He also has a smaller incision on his side from the chest tube.
They just took out the chest tube! They also told him he should be able to get out of the hospital tomorrow morning. So thankful! He is well drugged and very happy to be done with the chest tube.
Met the surgeon. He said that he took a deep wedge out of Robbie’s upper lobe in his lung to get the largest tumor. It was larger around than a silver dollar. He took three out of his lower lobe the size of quarters. He said surgery went better than expected, because he was able to remove everything he found.
He will know more when pathology results come back to know the percentage that was killed by chemo, which will determine treatment.
He plans to do the other lung when this one heals. Will have chest tube for a couple more days.
The surgeon’s nurse stopped by this morning and talked with Lynn and Robbie. They took out four abnormalities (tumors) – they’re being sent to pathology to check them, about a week to come back. The surgeon will stop by later. We understand that he took a wedge section out of Robbie’s lung. He had to crack a couple ribs a little to get at his lung. Robbie has incisions on his chest and back.
After he recovers from left side there is an option moving forward to do the right side as well – at a minimum four weeks normally between surgeries. I didn’t realize they were considering this, but if it helps, we will trust their judgement.
Lynn said they checked on him constantly all night long. He continues to be hooked up to multiple monitors and the chest tube keeps draining. Similar to the leg tubes only larger.
He is doing okay. Very tired and looks miserable. I think the pain is well controlled with meds, but an overall weakness, exhaustion, and discomfort.
Thank you for all your support. Seeing him after surgery again is so difficult. I hate seeing him suffer. I’m thankful everything went as planned and I don’t think he needed any transfusions this time.
Robbie’s surgery started at 2:00 and lasted a little over 2 hours. We got to see him at 6:00 tonight in the recovery room. They moved him to his hospital room (finally) at 9:30. Lynn is spending the night. Jim, Ruth, and I came home.
Robbie has a chest tube hooked up to his lung to drain fluids (yuk) and he is on oxygen. He has a 4 day pain med that is helping to block the chest pain. When we first saw him, he said that he had been asking for us. He looks pitiful.
Curly, his favorite sloth, went to surgery with him.
The doctor is a man of few words, so we don’t know much beyond the fact that he is confident he found all the tumors and removed them. He did an X-ray during and after surgery to double check. There was one larger tumor and three smaller ones.
Thank you for all your prayers and support. ❤
Robbie is in the recovery room. The dr took out 4 tumors. We will get to see him in a couple hours. More updates later.
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.