We were scheduled to meet with Dr. Gouw yesterday. Trent has been terribly ill that last few weeks and I knew it would be a chore getting him to SLC. The night before our appointment he kept telling me he needed to go to the hospital because he thought he was dying. That was hard to hear but I had been monitoring his vitals and they were all fine. I told him his body was not telling me that he was dying but his mind was not agreeing. Scary. He finally got to sleep, somewhat, and woke up agitated. He has been sweating profusely at night and it makes it so difficult to sleep well. His emotional state was a little shaky to begin with and then we met with the Sarcoma team. Oh brother.
Since the last time we were at the Huntsman for treatment everything has been shifted to the new wing. Our clinic was once bustling all the time with the infusion room and lab right next to it. This time it was like a ghost town. Kind of eerie. It was really quiet and it seemed as though everyone who saw us knew what was coming before we did. I am sure they did, because they were all in the Sarcoma team meeting the day before. I think I knew what was coming when they took us to the consult lounge instead of the exam room.
We talked with Dr. Jones first. He told us that Trent had already blasted through all the odds for his survival. He again talked about making sure we had all of our affairs in order. He told us he was very impressed with our faith and how we have handled this whole ordeal. He asked me what I thought about doing more chemo. I immediately started to cry. I said I think we should do it but if Trent says 'no' that is okay. That hurt. Badly. I love him enough to let him die to be free from pain but I still have faith that will not be the case.
Then we saw Michael Kennard who has become a dear friend. He helped facilitate our transfer from Nebraska and has helped us many times since then. One time he even drove a script for pain medicine to North Ogden so I wouldn't have to drive to SLC. He wanted to make sure to see us before he changed jobs. I felt like everyone we saw, wanted to see Trent before he dies. That was a little disconcerting. I know they mean well and we appreciate the love and concern but it was difficult to be in that situation. Of course I was quite emotional and I know they are concerned about me too.
Dr. Gouw came in after Dr. Jones and discussed the options. We were given the choice of doing chemotherapy, consisting of Gemcitabine and Dacarbazine, or nothing at all. He said that chemo is not a great idea but it is not a bad one either. He doesn't hold out much hope that it will do anything besides make Trent more ill and possibly hasten his death. The chances of getting an infection and dying are very real. Either way, Dr. Gouw suspects he does not have much time left. We talked about some measures to make him more comfortable and what some of our options would be. We were scheduled for infusion this morning at 8:00 am. We told him we would pray about it and see what the morning brought.
We immediately knelt to pray for guidance in making this life and death decision. We cried buckets of tears and then some more. I cried for my children, for Trent, and myself. I was a mess. Trent was a mess. Megan was waiting for us in the lobby and silently took in our somber mood. We went to my brother's house to rest and take it all in. This time I sobbed. Megan kind of hid herself behind a wall and listened to everything I am sure. At one point in the afternoon I had a very distinct thought. If I had asked the doctors how long Trent had to live when he was first diagnosed, they would have said a few months. I know they did not expect him to survive the summer of 2010. But, we never asked because we did not want to know. So what makes it any different now? We had faith then, and we have faith now. We are in the Lord's hands and He decides how much time Trent has left. That was comforting. It doesn't matter what anyone says because we are all on the Lord's time. So I have decided not to let that bother me.
Later that afternoon, Trent and I explained what was going on to Megan and asked her to pray with us. Then she and I left Trent at Josh's while we went to Josh's office to get her teeth pulled. What a normal thing to do on such an awful day. While we were driving I asked her what she thought. Her reply hit me like a ton of bricks. She said, "Mom, we were given that blessing so we have to do more chemo." Her example of faith was so reassuring and eye opening for me. Megan has been tighter than a drum with her emotions throughout this whole thing and at times it has seemed like she doesn't care. But at that moment I clearly understood. Her faith is greater than her fear.
We made the decision to continue the chemo knowing that we don't have to continue if the side effects outweigh any benefit. We prayed about it and felt that it was the correct answer. Josh also gave Trent a beautiful blessing. We are on the right path and just need to continue in faith to whatever end may come.
We got to see Mark and LaDena yesterday and today Mark got his chemo right next to Trent so we could visit. Trent slept but I had a wonderful talk with two friends who know how hard the cancer road can be. I also got a little "present" from one of our favorite nurses from infusion. Cyd, a.k.a. Johns Hopkins, brought me a little something she thought I could relate to. She found this quote,
"Being happy doesn't mean every thing's fine. Be happy because everything sucks but you're doing just fine."
And this picture: