Sarah here. The following is an update via email from both Lila and Rachel.
To bring you up to speed of how we got here….
Lila: “They came out to LA ready to dive into a new trial (Phase 1 patient 1, AKT & BRAF inhibitor). Their hopes were pretty crushed when they were told that his ECHO was not at the range they wanted it to be. The meds for that trial would be dangerous for his heart and since the numbers were not what they wanted, he was kicked off the trial.
Doctor Ribas, Kevin’s primary oncologist in California, decided he wanted Kevin on the BRAF inhibitor with chemo together as he felt that will buy him some time. Dr. Ribas encouraged them saying there are always new trials on the horizon. Kevin’s levels continued to climb so they were hoping the chemo would start shrinking the cancer cells and bring his levels down. Unfortunately, levels didn’t go down so they installed a stent to relieve the burden on his bile duct. Later they found one more blockage and installed a drain attached to a bag outside his body. He still had lots of uncontrollable bleeding from the tumor on the outside of his face, on which they did surgery to stop the bleeding. It worked well and the bleeding became minimal. He was sent home (to their rental house) with Rachel. The kids were having coughs and running noses so Lila and Paul kept them as they couldn’t be around Kevin with his compromised immune system.
We had a birthday dinner for Kevin and later a small party with close friends. Then his drain started leaking. Back to UCLA they went. While they were there, Rachel got violently sick and could not stay with him at the hospital. They called a friend (Erik) to be with Kevin until he could see the doctor. The doctor said that it happens – these drains leak from time to time. They told him to put Desitin on the skin around the drain it to heal the irritation.
Rachel stays at Kevin’s cousin Claudia’s house overnight as she lives close to UCLA. Paul ended up taking Rachel the ER, where she was diagnosed with a stomach virus. Kevin’s tumor continued to grow to the point that it’s pushing his face to one side making it difficult to eat and brush his teeth. He’s still in pain from the tumor and back pain from the sustained hospital stay. He’s tired all the time and has a little appetite and is very weak.
So now Lila caring for him, Rachel is at the rental trying to recover and cannot be around Kevin and the kids are staying with friends (Bill and Linda) because they can’t be around Kevin either in their condition. Luckily Bill and Linda are open to caring for the children as long as needed. What a blessing they are! Also the rental house and where the kids are only minutes away from Paul and Lila’s house.
Today, Rachel is much better and is not contagious so she can be around Kevin. She is still weak but is took Kevin to UCLA today. He has an appointment to see the doctor and have labs and scans done. Kevin has a lot more bleeding now then he’s had the past couple of days. He’s very tired, he’s eyes are yellow (jaundice) and he’s weak and ate very little. He’s still throwing up occasionally. Today we should find out what his levels are. If they are good and continue in that direction then there is a chance that he can still do the trial. If not they will continue with the chemo.”
Rachel: “The results from today’s appointment are mixed. White counts are up which is good. Liver levels are up which is not good but not too high. His platelets are low so he will get a transfusion next week if they continue to be. Weakness seems to be from a combination of deconditioning from the hospital stay, cancer, elevated liver levels, and chemo. Docs say overall he is in good shape considering everything and to focus on resting but moving around and on getting calories. We’ll be doing more protein shakes and try to add in some other tasty ways to get calories. We are encouraged and stay the path for now.”
Please pray everyone. Pray for this chemo to work. Pray for his liver to function properly. Please, please pray.