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…

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…

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…

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…

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…

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…

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…

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…