Round One

 The first week of chemo was so hard.  We were still grappling with the fact that Taylor even had cancer.  The first round (maybe the first two? Funny the details that I forget) were not inpatient.  She would have chemo and then go home and then we would go back the next day for more chemo.  They were still running tests on her so she would get chemo and after it she would have some scan or procedure.  We would spend the entire day at the hospital and then go home late, and get up the next day and repeat the same nightmare over and over again.  We were also going back and forth to see Jeremiah in the NICU.  It was brutal for us, but even more so for her.  The chemo she was getting wasn’t low dose, it was extremely toxic.  She was so exhausted. I also was beginning to really loathe the fact that we kept having to hold her down for painful things to be done her.  She would scream her little head off, and we had to hold her while her port was accessed, or a catheter was put in.  She was always so sweet and quick to forgive.  As soon as it was over, she would curl up in our lap again.   We were always ready with a puke bucket, and we learned to always have a spare pair of pants on hand, as the chemo would give her impressive amounts of diarrhea.  She went from being a very active baby to just always snuggling down and resting in our laps.  We moved her crib into our room so that we could have her near by at night.  We got through that first week.  It was horrible, and it broke our hearts.  What we were completely unprepared for was the neutropenic fevers.  The doctors told us to bring her in to the ER if her fever reached 100.5.  What we didn’t know is that Taylor had to be admitted until her counts recovered.  We were finally going to have two weeks at home (once she finished that round of chemo), we could be with our other kids and then Taylor would be able to rest and regain some strength. After a couple of days at home, she spiked a fever, we took her to the ER.  She immediately got admitted and we stayed until her counts rose. It was a week. I began the different stages of grief around this time. I went from feeling the need to cry to being mad.  I was mad at the doctors, very irrationally, might I add.  But they are the ones who broke all the bad news to us, so my anger was pointed at them.  I knew it wasn’t their fault that Taylor had cancer, but I was still mad.  Again, I’m polite to a fault so I never yelled at them, but the anger was simmering.  I remember telling Randy that I might need some counseling.  I felt like I was unraveling.  Everything was spinning out of control.  My baby was in the NICU, my other baby was fighting cancer, I wanted to be with my other kids, and I couldn’t.  I might have needed counseling for awhile, but we had no time to even think about going to counseling.  Taylor’s treatment plan was incredibly intense.  I started to feel helpless and even felt moments of despair.  I would look way into the future and wonder how we were going to get through this.  They told us it would likely be a year and a half of treatments, and Taylor was already so sick and weak and it was only her first round of chemo. The next year and a half stretched before me, and it felt like it would be forever, it might as well be, in my mind. I was getting on the elevator one day, I don’t even remember where I was headed.  I was in a funk and really discouraged.  When I felt the Lord whisper, “You can’t keep worrying about tomorrow, or next week, or next month.  You just need to get through this hour”… then it was like He gently said, “not even this hour, just get through this second.  Now breathe.  Now get through the next second.  Eventually, all these seconds will become minutes, then hours, then days.” So that became my mantra, when I got overwhelmed (which was often), just get through this second Julie, you CAN get through this second, now breathe… ok, you made it.   

During that stay, I was holding Taylor and I looked at my shirt and noticed little hairs all over it.  I was like, “weird, I wonder how Lassos fur got all over my shirt?”  Then it kept happening.  That’s when I realized Taylors hair was already falling out.  A lump immediately formed in my throat.  We went home the next day and I sat on the couch and gently pulled her hair out.  It came out so easily and in big clumps.  I kept it all in a baggie.  I wanted to keep it, if she died, she wouldn’t have a lock of hair to cut off for me to keep, so I kept her hair.  She had big beautiful eyes from the moment she was born, and when her hair was gone and she was bald, it made her eyes stand out even more. Now our cancer kid, really looked like a cancer kid.  

Randys work was very inflexible about time off.  He had taken time off for diagnosis week, and then when I had Jeremiah.  He had family medical leave, but it wasn’t paid time off and he only had a certain amount.  So he would go to work overnight, then go home and sleep or sleep at the hospital, then he would spend some time with the kids and then go back to work.  My mom never went home to Utah with my dad.  She stayed to help us, and he went home and closed up their ministry, packed up and sold their house, and then came and be with us and my mom.  Their help was priceless.  It helped Randy and I to be able to see each other and be together as much as we could, and we knew the kids at home were being taken care of.  They would also switch places and sit with Taylor so that we could be home for awhile.  I don’t know what we would have done without them!

Around this time we discovered that a little boy in our small town was also battling neuroblastoma.  He was a couple months ahead of Taylor in the treatment plan.  He always gave me so much hope and calmed my fears, as I knew what to expect in each of the treatments, because he would go through it before Taylor did.  We also found out that he went to the same pediatrician as we did, and his family were believers, like us.  His cancer was not found until it was stage four, unfortunately, and it had spread to his bones by the time it was finally discovered (he had been in and out of the doctors and ER trying to figure out what was going on).  I, to this day, think that the doctor was so aware of Taylor’s tumor because of Landon’s cancer.  I feel like Landon saved Taylor’s life in that way.  I will forever be thankful.  But also sad about that, sad that his wasn’t found sooner, like Taylors was.