Christian's PPB Cancer Journey

We met with the oncologist yesterday and the plan is to start the new chemo therapy March 6th. The pathology report came back the tumor they were able to take out of his leg came back positive for PPB cancer.

Last Friday was surgery day they ended up placing a rod from the lower part of his femur up to about midway up his femur and six screws.

Surgery took about three and a half hours. They took the catheter out that day and because of the epidural still being in he wasn’t able to use the bathroom. About 2am Saturday the nurses tried to place a new catheter two different sizes they couldn’t get it. At 4am the urologists came in and placed a new one. He was getting sick all night.

Finally Sunday he got his appetite back and was feeling better. Later down the road they may have to go back in and change the rod out as he grows.

Monday they took the catheter out and he was able to use the bathroom. Saturday they took the epidural out. We visited with the puppy that comes to the hospital he was happy he missed his Rubble. We checked the portal for the pathology to see if it came back yet from parts of the tumor they took out and seen his surgeon scheduled an appointment for next week out of the blue. We seen him the day of his leg surgery he was on standby incase anything went wrong and never mentioned anything about it. We are worried now we have found out whenever a doctor wants to see you in person its never good. But we are staying hopeful it is nothing.

Last week being cleared for surgery. Pet scan results came back there is a spot on his pelvis that is new but could be nothing.They will do follow up scan .The same area around the clips in his chest is still lighting up. The tumor in his leg is still lighting up. Next week we speak with his oncologist about the plan for treatment going forward.

We met with the orthopedic surgeon today and the plan is to get a PetScan this Wednesday and if everything looks ok and there are no changes that would complicate doing surgery then surgery will be this Friday. If he was to stay in the cast it could be for atleast 8 months and there is no guarantee it would heal properly and he may need surgery anyways. What he has is called a pathologic fracture. The tumor is in between the bone where the fracture is that is why it could take so long to heal on top of being compromise from radiation. They will make small incisions for the surgery, depending what it looks like they will either put plate and pins or a rod and pins. They will take out most of the tumor and send it out for testing see if there still live cancer cells and if any mutations they can target with therapy. We will be in the hospital for a couple days but he should be able to walk the day after. His main surgeon will be on stand by if any complications happen.

We met with the oncologist today he wanted to talk to us in person. He let us know that the last scan showed some small spots on his right side where the lung is gone and a half cm spot on the left lung again. He is thinking it is more cancer.

He wants to focus on his leg right now. We are hoping he doesn’t need surgery but we have already talked with his surgeon in the city and he wants to be in the room incase anything happens.

The oncologist and surgoen in westchester would like to see an updated PetScan to give them more information. The medicine was finally approved.

He will be the first to take it for PPB cancer. He hopes it works but there is no proof that it will. He said we need to start thinking about quality of life and will have us meet with at home hospital staff.

He said no kid with PPB that had a relapse has lived this long. Its the conversation that makes you sick. We are not going to lose hope. He wants us to keep doing things with him like we have he said we take trips and do things he didn’t know could be done in one day. He loves making memories and we love making memories with him.

He is our entire world. We meet with the orthopedic surgeon Friday then the other orthopedic surgeon next week. We pray that he will win this fight.

Today sucked we saw a different orthopedic doctor yesterday. They ended up resetting the fracture and put a cast on his leg. He had new bone growing back already so if they would of did this last week maybe it would of been healed by now. It’s a good thing he was sitting on my lap because it was hard not to cry while they were resetting the break. We still can’t believe the tumor fracture his femur. He has been in a lot of pain. Hopefully it will start to heal fast and he won’t need surgery.

It has been a very busy week Tuesday he had his simulation under anesthesia. That went good. His leg is really bothering him it hurts just to move it.

Wednesday he started radiation. The doctor told us it should stop hurting him soon. Thursday he had the bronchoscopy done. they did not see an air leak. We are hoping it will clear up on its own and he could have just caused a temporary air leak while he was coughing from th RSV a few weeks ago that may have healed itself. The leak could be coming from the bottom of his chest.

They took two biopsy of a nodule that they saw at the point where they removed his right lung and eventually just took the entire nodule out and sent it out to test for pathology. We should find out by next Wednesday what it was. The team is having there tumor board meeting on Wednesday as well we will know more than. They will want more scans possibly a pet scan to see if the spot of air healed itself. Today he had his second round of radiation.

Today his EKG was good and his echocardiogram thank god. It was nice to get good news that his heart is good times like this we can take a big breath. We spoke with the adult pulmonologist IR doctor. He is going to do a procedure on Thursday where he will put a breathing tube in and he will put the camera down his throat that way to see if he can see a possible air leak or possible undone stitch from his surgery in 2024.

The air leak can be because of several different reasons. It could be infection, one of the staples could of opened from his lung resection, or there could be a new tumor eroding a hole. Depending what it is they have a different couple ways to fix it. Any procedure that needs to be done in his chest has high risk’s. He will have pediatric surgeon in the room when he does do whatever needs to be done to fix the air leak. Tomorrow he has the simulation for radiation where they will make the mold of his leg so it goes in the same position everyday. Wednesday starts radiation Thursday the procedure then as long as everything goes good no complications no bad side effects he will continue radiation Friday, Monday, Tuesday Wednesday. His leg is really starting to hurt more so they gave him medication. hopefully the radiation works fast.

Update from today CT chest scan. We can not catch a break they see a possible air leak in his chest. Monday we speak with the pulmonary IR doctor about what to do next. From what the surgeon said to us was the pulmonary IR doctor would put a camera down his throat to see what is going on from the inside. With adults they can place a stent but because his age and weight he may need chest tubes placed again. His chest is also shifting pushing on his liver. He can’t put pressure on his right leg because of the tumor.

Tuesday is the simulation for radiation that will be another CT under anesthesia. Wednesday he starts radiation.