A long time ago I remember going through some major challenges in my life and I asked my husband, "When will the ease come?" In Islam it says, "After every difficulty comes ease." Okay, when is my ease gonna come? My whole life always seems difficult, just one test after another. He said that is a common misunderstanding it doesn't say "After" it says "WITH". As part of the narration says, "...and know that victory comes with patience, relief with affliction, and ease with hardship." Instead of waiting to see light at the end of the tunnel I look for something which will help me light my way through it. I was so excited at the doctor's visit to hear that Yousuf being of off chemo for this week also meant I could take him to the masjid with me. I came home to find Omar with a 101.5 temperature and a rash all over his body. I rushed Omar to his local doctor to find out that he has a virus and thrush in his mouth. My attention had to be on Omar and getting him to feel better. Yousuf has been almost back to normal this week in his behavior, his eating and activities. The difficulty of Omar being sick was accompanied by Yousuf being in a much better state. Yes, I struggle with Abu Yousuf away but the appointment he missed out on was an easy check-up between phases of therapy...With difficulty comes ease! We just have to recognize it and appreciate it.
However, there was a surgery that took place this doctor's visit. ANOTHER port-o-cath was implanted on Monday. Mr. build-a-bear is recovering quite well after being cut open with scissors on his side, the same place Yousuf has his. The Child Life Specialist was the one operating with Yousuf as the assistant making sure everything was done properly and adequately. A way to calm him down once it was his turn to access his port? Uhhh..no. We had two Child Life Specialist by his side, a nurse and mom holding him in her lap. It doesn't matter. We could bring the most sophisticated child psychologist, all the most skilled psychiarist from all over the world and this boy will still put up a fight by screaming and crying while poking his port. Mr. Bear is his new best friend as he is the only one close to him who can now feel what he goes through.
The good thing about this visit is that I got to keep Omar with my neighbor to make it easier to just stand by Yousuf without distraction. Which also made it possible to make myself comfortable in asking the doctor anything that popped in my mind. Monday we had Dr. Stevens as the one who examined Yousuf. We were assigned two oncologist and Dr. Stevens was the first one I met. I met him in the ER. I had to take Yousuf down the hall in a wheel chair to wait for someone to give him a chest X-ray. I sat in the hallway on a bench shivering from the cold hospital looking and feeling like a zombie. After a day full of tears, shock, and confusion I sat there numb and motionless. Right then a thin man with a receding hair line and very rosy cheeks walked by but then paused and came back and asked if this was Yousuf. I said yes hoping it was our turn to get the X-ray after waiting for many minutes. Dr. Stevens was very friendly. He stuck out his hand and introduced himself as Dr. Stevens who is the oncologist assigned to Yousuf. I glared at his hand for what seemed like one whole minute confused on what I should say. I was thinking to myself this is the most popular place in the world that have people from all over the world and he doesn't know someone dressed like me can't shake his hand? I tried to explain to him we don't shake hands with men. He was very understanding and still as happy to be Yousuf's doctor but I felt awkward seeing him after that the next several times. Two months later he tried it again. I, again, stared at his hand thinking to myself how could he forget? Dr. Margolin interceded quite nicely saying "Just wave from where you are." I smiled and thought that was nice and professional of her. I actually took the extended hand as nothing more then an extension of compassion for the struggles he sees us going through. I embrace it with my heart and my memory for every step he takes in helping Yousuf and us as a family survive this physically and emotionally. That is far greater then a handshake.
I asked him why, if this is the easiest type of leukemia, then why does the treatment last 3 1/2 years? He said it wasn't the easiest leukemia type but the easiest to treat. It responds better to their treatment then any other leukemia but it just takes a lot longer to do it. I also asked him why we keep switching medications, go off one and then back on it again in later phases, and the spinal taps are at random? He said it is a way that is necessary to trick the leukemia, confuse it. If they are consistent in medications it will learn how to defeat it and cause a relapse. In another month (after this new phase that starts next week), will be the re-induction phase which increases the chemo-therapy drugs again like in the beginning. It will get hard again but then after that we will start the maintenance phase which is little more consistent and easy. But lets just take this one day at a time and one phase at a time.
When I took Omar to his doctor (which is the same PCP as Yousuf) it was my first time seeing her after Yousuf's diagnosis. She told me she went on vacation ONE DAY and that was when I came in with Yousuf and gave her assistant a scare. She said she has been in private practice for 12 years and the first 10 years she did not have a single patient with leukemia then in the passed 1 1/2 she has had four and Yousuf was the fourth. Amazing. She told me that she remembered when she was kid when someone had leukemia they were dead within three weeks. It's truly amazing how far we have advanced in tackling this vicious disease. Insha'Allah, with many prayers and patience Yousuf will be added to those success stories of the past and give hope to the one's in the future. Amin.