For the next few months things were very monotonous. The girls were staying with my parents at this time and I would go every day to see them. It broke my heart that they were staying there and I hated to leave them every day. Ray couldn't handle the noise (even the little bit they would make) or them trying to play with him. He didn't have the energy or the strength and asked if they could just stay with them. He liked to visit my parent's house and almost every day we would go over there to see the girls and eat dinner or just get out of the house.
My days consisted of keeping the house clean because I was worried any little germ could potentially be fatal. We were also constantly emptying bags of fluids. My house began to have a "sick" smell. If I did bring the girls over I made sure they sanitized like crazy and everything was clean. If we had gone to a play place I would bring them in and strip them down as soon as we entered the house and throw them straight in the bath. If you ever wonder why I am so bothered by bringing kids sick to activities this is why. I remember one day taking Lily to her gymnastics class and the other little girl was visibly sick and running a fever. She was crying and her nose was running. The mom told us she couldn't handle being in the house one more day, she had had sick kids for 2 weeks at home. I never told anyone our situation but at this point I couldn't help but tell her how if my daughter now got whatever it is that her daughter had it could land my husband in the hospital or kill him. She was so apologetic and said she never thought of it like that. I still to this day keep my kids home from activities if they aren't feeling right because it isn't worth it you never know who you can come in contact with.
His mom stayed with us for the first little while too. After a short time we realized it wasn't really necessary. He would just sleep most of the time or watch tv. My days were filled with just hanging around in case he needed something.
Monday was chemo day and also Summer's dance class. In the beginning his mom and I would go with him. Sometimes it would be a quick trip just for chemo, other days it would be a very long day with fluids or appointments. He would sit in the chair and sleep and we would read. It was so hard going to these appointments and getting into the waiting room and being the youngest ones in the waiting room. Majority of the patients were quite a bit older and doing "well". Most would be beating the cancer with treatment and not just prolonging their life with it. It was a hard thing to do every week. After a while his sister decided to come too and three people sitting in a room didn't make sense. I started to take Summer to her dance classes every now and then. It was refreshing to be doing something "normal" and to go back to being a mom. I felt like I was missing out on so much by not being with them but also struggled with not being with him. I talked to him about it and he agreed it didn't make sense for everyone to go and I was doing the right thing.
During this time he became sicker and sicker. Weight continued to drop and he began throwing up everything he ate as the tumor wrapped around his intestines and the food had no place to go, but back up. They decided at this point to put a tube down his throat that came out his stomach and whatever he ingested would go through the tube and into a bag that would have to be emptied. He reminded me of a doll. Everything you put in came right back out. He also had to be put on food bags for nourishment. I remember him being in the hospital and all upset and the nurse telling me he wasn't dying and that this would help him. Every time things progressed I knew we were closer to him dying. I continued to be an anxious mess.
I wasn't trained in the medical field I couldn't hook up food bags and disconnect them. I couldn't clean the tubes, etc. What if I messed up and killed him? At the very beginning of his journey his first chemo appointment he couldn't even walk and was out of it. We found out he had been given the wrong dose of medication and his blood pressure was so low if he wouldn't have come in for chemo he might have died. He ended up needing a ton of fluids that day. I asked for an outside company to come in and assistant with all training because we were all too invested and I wanted to make sure feelings didn't get in the way of doing what was right. Now my days were even more structured around caring for him. I had to wake up at a certain time every day to hook up his food and go to bed at a certain time every day to take it off. He lived on 7-11 Slurpees one of the few things that he could tolerate that wouldn't make him sick.
Every now and then he would get a craving for some type of food because he could no longer eat. One day he was craving Salsarita's burrito. He insisted I take him to get one and he was going to blend it up and drink it. Can you imagine wanting something so bad you would be willing to blend it up and drink it? I remember going into the restaurant and the stares from the employees and customers. He probably weighed under 100 lbs at this point and had ashy skin. I just remember asking for extra sauce because we needed to blend the burrito and make it more of a liquid and the lady looking at me like I was crazy. He did end up blending the burrito and drinking it. Now when people ask me why I let my kids eat junk all the time...this is why. What if one day they can't have it?
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