Christian's PPB Cancer Journey

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.

Monday had another round of the trial medicine. It was a long day lots of blood draws. Tuesday we went back for more bloodwork. Still fighting the insurance company on the other chemo medication. The state can’t get involved because our insurance is through my husband union and is private. We are going to keep fighting them. We just hope and pray the medicine he on now is the miracle we need.

Monday he had another infusion that went well. He still feels like crap from the RSV. We will know by January 2nd if he can continue getting this trial medication. We are still fighting with the insurance company to approve the other chemo medication it has got to the point we filed a complaint with NY state.

Our baby cannot catch a break spent the night in the ER he had a fever and cough. He has RSV they think he got it from the hospital.

Second infusion done he not feeling good he got sick on the way home. The EKG was good today.

From looking at his bloodwork from today his immune system is down. We go back next week for another round of medicine. Scans at the end of December. If the tumor is stable meaning it doesn’t grow more than 20 percent he can stay on this trial medication if not then they will stop it.

They finished the holiday hallway it is something he looks forward to seeing.

First infusion was done yesterday he did great. They had to give him a IV to give him the medicine and they drew blood from his chemo port. We were so proud of him. He did amazing with having to get the iv in his hand. He was scared but still let them do it and says next time wont be so bad. They have a buzzing ladybug that they put on his arm between where they put the needle in and his head. Whoever came up with this is a genius. Because its a research medicine they have to take a lot of blood before and four hours after the infusion and the following day. Vitals are taken every half hour from start till we leave. They also do an ekg 2 hours after infusion completes. It was a total of nine hours. He so brave and strong. He knows he is a real life superhero.

Update from last week. Monday we meet with the oncologist signed papers went over everything.

She does not know if this will work but it is lesser toxic than other options right now. But she thinks a good option while he still feels good. We are still trying to get the chemo medication approved that he will going on if this doesn’t work. For a ten day supply of the chemo medication its three thousand dollars. We are also going to try to get the new medication thats coming out in the beginning of the year that a lot of people are as well. The most likely side effect to the immunotherapy he going to start tomorrow will be flu like symptoms. They said it would be good because that means its working but we don’t want to much of the side effects. He had bloodwork done for the research medicine. Thursday had another MRI done on his femur and the tumor has gotten bigger in his leg. He had a CT scan done on Friday that showed that tumor grew as well but we knew that from when he received radiation.

Repeat scans will be in December. He wants the medicine to make him bold again so he can look like his daddy. The oncologist laughed said she never heard that before but its cute.