For those of you who know Kevin well, you may know he loves to check things off the list. So Wednesday, we checked off step 1 at USC from the list. One round of Taxol/Ifosfamide.
Everything went well at USC. I mean, it was a hospital stay, and things never go completely as you would hope right? We were told to check in Saturday, but call first because all the beds were full. So we needed to see when a bed may be available for him. I called at 7:30am and was told to call back around 1pm. I was a little surprised….but ok. We decided we would leave our area around noon and then have some time for a few things until the room was ready. Just as we got comfortable with that plan….I got a call saying a room was ready now….it was 10:30. Of course. So we told them we’d be there between 1 and 2 and finished getting everyone ready and off to their respective places and headed south.
Upon arrival, we had to wait for the bed to be ready. Apparently, they gave away the beds as fast as they were emptied, so she had 3 rooms saved then given away before we got there. The wait wasn’t too long, but still the first instance of hurry up and wait for this stay.
Got situated in his room….and first on the agenda was to get an IV started. Chemo has a way of hardening veins, so this was not an easy task. After Kevin’s nurse failed, she called the ‘best’ nurse to come, but he was very busy so we waited for a long time…he never came. Thankfully the charge nurse from our floor decided we waited long enough so she would give it a try. She was able to start it on her first try. So only one wasted stick and a wasted hour or more.
Day one of chemo started late. 10:30pm. But it got started. This was a new regimen for Kevin so we didn’t know what to expect. The Taxol was a 24 hour bag so once he was connected, it had to run for 24 hours. He really wanted a shower on Sunday, but had to wait until the Taxol completed before he could take a shower. Then the next drug was Ifosfamide, it was infused over about 4 hours each day for 3 days. They started the first dose of this right after his shower break. This one he has had before, but in a different dose. Ifosfamide can cause bladder hemmoraging so there is a complimentary medication called Mesna that is given to protect the bladder. Because of the dosage of Ifosfamide on this regimen, the Mesna needed to run concurrently and for 24 hours total. Fortunately, they were able to pause it for a bit so Kevin could disconnect and get his shower every day. That made him very happy.
On Sunday….he watched A LOT of football! He was plenty entertained and took laps around the floor at half time on each game. I think he ended up walking several miles total. He was still feeling good.
Monday, he was still feeling pretty good. We talked to the doctor making rounds about getting his feresis catheter installed. He needs that for the stem cell collection that will begin next Monday. It can also be used going forward for blood draws and infusion of chemotherapy and stem cells.
A nurse practitioner came back and told us right as lunch was being delivered, that Kevin was now NPO (nothing by mouth!) and they were going to install the catheter that day. Kevin wasn’t prepared to miss lunch and was getting a little grouchy while he waited to be taken down. At 4pm someone came back to the room to let us know that they weren’t going to be able to get him in after all. But he was being put on the schedule and should be having the catheter inserted around 10am the following day. So he could eat now and have dinner, but nothing after midnight for the morning procedure. So he waited.
Tuesday, he was starting to feel a little run down from the chemo. No breakfast. 10am came and went. 11am, noon, 2pm. We played some games, watched some TV, and waited.
Finally at 3:30pm he was taken down for the procedure. You can imagine how happy he was to be waiting in a fasted state since 10pm the night before! A little drama between his floor nurses and the people doing the procedure about using the IV he had. But in the end, the catheter got inserted and he survived the ordeal.
Everyone was super apologetic for the waiting and the mis-communication. It was the one redeeming factor in the experience because everyone really was super compassionate, and caring and trying to be the best and sometimes things just don’t go smoothly.
Overall this round went well. Kevin is feeling a bit tired and has been having a headache he can’t seem to shake. But not too bad after 4 days of having poison pumped through your body. Enjoying being home a few days and not be woken up every 2 – 4 hours for vitals, and other various invading nurse visit.
On Monday he goes back to LA for step 2. Stem cell collection. This will be a relatively easy process for him. He just needs to sit there all day for 2 – 5 days while they filter his blood and collect enough stem cells to complete a triple tandem transplant series. The nice part is it will be done outpatient. So he won’t be woken up at all hours of the night. But since he needs to be there from really early every morning and through most of the day, and the traffic is… oh so fun… through LA, we have decided to stay in Pasadena (about 8 miles from the hospital).
So, that’s what we got going on for now. Please pray for our kids. Life is turned pretty much upside down for them right now. They are being fantastic! They have been flexible and strong but it is hard with Kevin’s treatment in LA and it sure is impossible for me to be in both places at once. Thank you for all of you who are personally helping to care for them, transport them where they need to go, feed them and thanks to those that are praying for them. We are so grateful for all of your support.