We got sad news today. The CT scan of Robbie’s lungs last night show his cancer has taken off and is probably the cause of the pneumonia and breathing problems. The clinical trial and lung surgery have been canceled. He will start aggressive chemo treatments on Thursday. This chemo is known to lower blood counts, which often include ER trips and transfusions.
Ruth and one of her friends are driving down Thursday. Lynn is on a business trip.
Robbie will get a matching scar next month when he has lung surgery again. I always have a hard time when I know he is going to have surgery. I hate to see him suffer and we know this isn’t a cure. The lung doctor is outstanding and I have confidence in his skills. I just need time to process the change in plans. He was in the hospital 3 or 4 days when he had surgery in December. I will take off two days and then we will have a weekend. Jim works from home, so he will be with him as he recovers. I wish I could be there too.
Jim took Robbie to MD Anderson for multiple tests today. He also met with Robbie’s lung doctor. He will have lung surgery on September 6th. He will remove all the tumors in his lung. The tumors will be used by the clinical trial team. It will be a lot to go through and the recovery will take a few weeks. He had the same surgery on his other lung a few months ago.
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!
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.
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.