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…

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…

Final day of radiation today woohoo. He did amazing like always. The strength he has is remarkable. Friday he has an MRI with anesthesia figures crossed and pray to god it’s not another cancer spot.