It was nearing the end of round 3 and it was starting to happen. It was always the same, every round Steve and I would start to lose our minds at around day 14. Hayes usually felt great at this point which was deceiving because his white blood counts needed to make their way back up after being knocked out by chemo and he was extremely susceptible to infection. It was a waiting game for when we would get to leave the hospital. Every day we would wait for Hayes’ bloodwork to come back and we would pray that his white blood counts were safe enough for us to go home. I was always so hopeful. I would talk to steve first thing in the morning and before his lab work was back I would “guarantee” that his counts would be up. I would promise to call him when we were on our way out the door. But then results would come back and disappointment would kick me in the gut. We were usually not going anywhere and Steve and I would both be so frustrated. It was out of our control, out of the doctors control and out of the entire staffs control. We could do nothing but wait and sit in his hospital room watching Daniel Tigers Neighborhood and Baby Einstein over and over and over again.I remember one morning crying to Steve that I was starting to lose my mind. We weren’t going home that day and I missed all of my kids, my home and the comfort of normalcy. Steve was frustrated too and missed the support of having a spouse at home. We were always ready at this point to be done! I got off the phone and sat down on the couch listening to the classical music coming from the TV. I cried in frustration and I looked over and Hayes was asleep. He was bored so he would take catnaps throughout the day. I turned off the TV and decided to take my frustrations out on a hospital room circuit workout. I was laying on my yoga mat doing sit-ups when I looked up at the sink above my head and noticed marker written on the under side of the sink. It was a note from someone that had been where I was 2 years before. It said:
“If you are reading this it probably means you are also sleeping on the floor…stay strong!!! Your child will thrive off of your support and love. *SAWYER STRONG 2014*”
I stopped what I was doing and immediately began to cry. I didn’t even know who this person was but I felt like I wasn’t alone. I felt loved by this person that had paved the way before me. I knew I needed to be strong but this person made me realize it that much more.
When your child is diagnosed with cancer, you immediately become a part of the club. A club that no one wants to be a part of. Before Hayes was diagnosed, I really didn’t even know there were enough kids with cancer to “have a club”, as it turns out, there are so many people in this club it is heart breaking. But, if there is anything I learned through this experience, it is that our children are stronger than we realize and we, as parents are stronger than we can imagine.
After Hayes’ stem cell transplant, Hayes had to have a G-Tube put in. He was not eating well and so rather than having an NG-tube down his nose to eat, he had a tube put directly into his stomach. He was much more comfortable, but I was so intimidated by it. I had given Hayes shots, I had flushed his lines, I had changed his dressings, but out of everything, the G-Tube scared me to death! The tube could get pulled out and you had to quickly push it back in and inflate a little balloon. In theory it seemed easy enough but in comparison to cancer, this was a whole different area of expertise. It wasn’t Life or death but I felt completely uneducated on what to do if it came out.
When Hayes was readmitted back into the hospital when his cancer returned he was being taken down for a scan. I had been holding him and had to lay him back down in his crib when my foot caught on his G-tube and yanked it out of his stomach. He had had it for 4 months and this was the first time this had happened. The nurses were right there and I looked at them in a panic, “What the heck do we do?” I was expecting them to grab him and calmly put it back in but they looked back at me mirroring my same expression. They didn’t have to deal with G-Tubes in the cancer unit very often so they had no idea what they were supposed to do. They were just as confused, if not, more than I was. I thought about having them look for someone that knew what to do, but I worried that the wound would begin to seal shut, that I would miss the window of time to help him because I had been scared. I took a deep breath, reached deep inside myself and found the knowledge I had tucked away. I put the tube into his stomach, grabbed a syringe from the drawer and inflated the balloon. I DID it! I was genuinely proud of myself! It had been something I deeply feared and I had faced it head on because I loved my baby! To others this may seem small, but this was bravery for me.
“Love gives you a crazy kind of Brave.” I know that now.