Christian's PPB Cancer Journey

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.

Test results came back from the additional testing. Only one test came back positive with a treatable target drug. Spoke with the clinical trial doctor today. After discussing it with his oncologist we decided to go with it. While we continue to fight with the insurance company to approve his chemo medication. Hospital is working on scheduling more scans under anesthesia and bloodwork so he can start the new research medicine. He has a echocardiogram scheduled for Wednesday. This is more immune therapy without warhead meaning without chemotherapy. Its an iv injection like a blood transfusion. First couple weeks two days then once a week. It’s an antibody protein that will attach itself to the tumor to try and get his immune system to recognize the tumor as cancer to attack it. It will not shrink the tumor on his leg now but hopefully will stop it from growing and stop any other cancer cells. If it starts to bother him or they see in bloodwork its not working then they will stop the trial and do radiation on that spot. We were told he can’t jump around. He qualifies for this research because the tumor through the bone into the soft tissue. We hope this is the miracle we need and been hoping and praying for. He will be the first with PPB to go on this trial.

Update from MRI of his femur and today’s conversation with his oncologist. Oncologist is waiting to review the images with his orthopedic surgeon. He believes it is PPB cancer it has came through the bone. PPB if it spreads it will spread to the bone and brain. At this point it is a question of not treating it so he can go on the list for trial medications or do they hit it with radiation.

Another possibility is removing by surgery but that can have complications. He said he had to say it but was discreet about it because kids were in the room but at some point if they don’t figure out a cure it will be a conversation on quality of life. We are going to fight this cancer and beat it we will not give up not now not ever. We are fighting with the insurance company to get a new chemo medication approved. It was sent in under Chris and they sent it in again the correct way and they denied it we are waiting for the appeal to get processed fingers crossed it gets approved if not we are back in a fight with the insurance company. We are waiting to hear back from the oncologist at are other hospital. See what she thinks about leaving it or doing radiation.