Robbie has a fever and very sore throat. We are back at the ER.
The principal and assistant principal sent over great food today. So thoughtful! I miss everyone at Centennial!
He is wearing a new sloth shirt from his Aunt Terry.
His throat and his ears are bothering him again today. The chemo drug Cisplatin is very hard on ears and kidneys. It is causing him to have nonstop ringing in his ears. It is also the best drug to kill bone cancer. They tried spreading out the dose last time, which I think helped a little, but to eliminate the drug totally is too risky.
Since he got home on Saturday from chemo our days have been very quiet. He doesn’t feel well enough or have the strength to do much. The shirt he is wearing is from a Zookeeper in New Zealand that found out he likes sloths. Very sweet!
For sure, we know that they will remove and replace his knee and part of his tibia with titanium. Prior to the surgery, the doctor will take additional scans which will help to determine how much of Robbie’s leg bones will be replaced. Additionally, the doctor will decide whether or not to move his leg muscle to the front of his leg during surgery to help hold everything together.
Robbie will also have a plastic surgeon in the room to assist with removing any soft tissue near the tumor. During the surgery he will have another biopsy. The biopsy will help the team of doctors to determine the type of chemo and how many rounds he will need following surgery. His plastic surgeon will also help to put the skin back together after surgery as Dr. Lin mentioned it is a difficult task. Robbie will have an enviable scar down his entire leg.
After surgery, Robbie will have to keep his leg straight for six weeks and then do physical therapy for months. Within a few weeks of his surgery, he will also start back up chemo every three weeks. We are not sure how many weeks we will be in Houston yet or what to expect after surgery. We have heard that the first three months are the hardest.
Below you will find imaging of his knee and leg as well as an info graphic we found online:
A little hard to read, but this is a picture of Robbie’s tumor.
|This picture shows the PET Scans. On the right is the original scan and on the left is the newest from our recent trip to Houston. The bright spot on each is the location of the cancer in his bone. As you can see, it is dimmer on the left indicating that the cancer is reduced after his treatments so far.
|As noted, the surgery will be slightly different than this image but is a similar process.
Robbie spent the day resting. He has a sore mouth and throat again. His ears are also ringing non stop.
I finally had a chance to go to church. Luckily we can always watch online. The sermon was about what to do when you are discouraged. They probably heard I was coming. http://www.life.church
Thank you for your prayers.
Ruth stayed last night with him. He finished chemo at midnight and then he had a blood transfusion until 6AM.
We just got home. He is doing okay. Very tired and feels yucky. Ready to be left alone.
Lynn is taking the night shift with her brother tonight and Ruth will be here on Friday. So thankful that the kids are watching out for each other.
Robbie is sleeping today between the beeps of the IV’s and the frequent stream of people into his room. The drugs have been pouring into his system nonstop, so he understandably isn’t feeling well and has crashed.
I’m still trying to recover from our trip to MD Anderson and asimulate all the latest information. I need to become more knowledgeable. There isn’t much information on osteosarcoma.
Robbie had a good day today. He even walked the halls a couple times with his IV cart. He is very quiet and tired. He will stay through Saturday. Jim is spending the night tonight.
They do crazy things at the hospital.
Lynn said they woke him up at 4 AM to weigh him?? They also were training someone in the middle of the night on how change IV and she dropped the bag.