Maintenance

Okay, so I know I just wrote an article about tolerance and understanding but the other day when I was standing in a line I almost lost it. The lady behind me patted Yousuf on his head and asked, “Where is your hair?!” Deep breath but still left breathless and speechless I left the place of business. I drove off in my car trying to hide my sniffles while Yousuf asked me what I was doing. I didn’t want to talk about it so I changed the subject and acted excited about our new chosen destination. The dark corners of my heart almost shadowed over the rest of it as I had a glimpse of me slapping the lady. My only regret was not to tell her politely why he was bald erasing her obvious sheer ignorance in hopes it never happening again. I hope no one else has to suffer the consequences of my poor decision on not taking the time to utter a few words of wisdom while tucking away those emotions.

Good news today, Yousuf is officially in Maintenance! The nurses seemed more excited than me. She gave Yousuf his final push of chemo and de-accessed his port. She left with a smile saying, “See you in a couple weeks!” We no longer have to go every week now. Every two weeks Yousuf will need to check his counts and once a month he will have chemotherapy. Every three months will be a spinal tap with chemo and a WHOLE LOT of oral medications to take at home. The phases now are in three month intervals, with oral medications changing each new one. What don’t change are Yousuf’s steroids the first five days and his usual antibiotic once a week three times.

Today when Yousuf had his PACU, I sat on the bed next to him while he was moaning nervously watching and listening to the doctors, nurses and anesthesiologist surround us on the bed. It’s like an orchestra listening to them is perfect rhythm.

“Yousuf Basyouni 9034105.” Than at least two other person will repeat it, “Yousuf Basyouni 9034105.”
“Yousuf Basyouni 8/2/05, getting an LP with methotrexate, agreed?” Than three other people simultaneously say, “Agreed!”

“Mam, you are Yousuf Basyouni’s mother birthdate 8/2/05?” Sounding robotic while exposing his wrist tag for me to confirm the information and hands me the paperwork to sign and initial. The doctor and anesthesiologist introduce themselves only seconds before administering the anesthesia. I feel Yousuf go limp in my arms and they take him from me laying him on the bed. We immediately leave while they shut the door and in no time have him on his side, pants down and shirt lifted. I stood right there watching in the tiny vertically rectangular window in the door. They were preparing something on the medal tray hidden by the doctor. I started to get anxiety as I was preparing myself to watch the whole thing this time, while nobody stopped me. Abu Yousuf was fighting Omar to get him in his stroller while I stayed glued to the window watching how Yousuf still had movement and what seemed to me like a slight awareness of what was going on around him.

I had asked him before what it was like to be asleep in there. He told me, “They stick me in my back.” I was shocked to hear him say that. “Does it hurt?” I would ask. “Umm, yeah it hurts.” Then he showed me the band aid on his lower back. So I wasn’t sure if he was saying that because of the band aid or if he really felt anything while under.

So I stood there and watched and was amazed that nobody knew I was standing there the whole time. After preparing what I had assumed to me the needle on the medal tray, but I could be wrong, they started to clean his lower back. I knew the next step would be big, I was getting nervous. It was then that a face appeared staring right back at me in that tiny window blocking my view entirely. While everyone stopped and looked up she opened the door and with a big smile and nice tone of voice pointed to the right and said, “The way out is that way.” I just smiled and said, “Oh okay.” Knowing full well we both knew that I knew the way out. And I was so close.

Yousuf recovered well, alhamdulilah, though he seemed a bit tired and anxious to go to bed earlier than usual. He started his doses of medications and went fast asleep. The past 6 months has felt like a totally different dimension of time. Life has changed significantly mostly for Yousuf. But in the end of it all we have gotten through it and succeeded it. Hopefully and insha’Allah the next few years will be as successful as the previous months.