His counts are dropping along with his energy. I noticed he kept falling asleep yesterday while running a couple errands. Yousuf was acting like Omar insisting that I hold him and carry him. I was balancing Yousuf in my arms while driving Omar around in the shopping cart. I was teary eyed from the weight. Not the weight of Yousuf laying on my chest but from the other heavy feeling of sadness. Fear. Fear to go through all of the downs again. I got used to him being his old self again full of energy and happiness. Sad because the sacrifices I have made in my social activities, my feeling of withdrawal. If anyone has the slightest cough, stuffy nose or feeling under the weather at all they steer clear from us. Yousuf is reprimanded from playing too close with his only friend these days (his brother) since he was having the same cold symptoms. In the midday sun in Texas I am, again, hearing complaints of being cold. A shiver went down my spine when I heard him. It was a toilsome time loving Yousuf the first couple months of his treatment since I didn't see him as Yousuf. He was a stranger to me and not my son that I knew. I just had to keep telling myself that under all the fits and attitude, chubby face, bald head and binge eating, Yousuf was in there some where and his true side will soon shine through again. I'm scared. How bad will it get again?
Our second round of chemo this phase was scheduled for 9:30am last Monday, our latest time yet! We usually are scheduled anywhere from 7:20am to 8:30am generating many sleepy faces and a very lazy start in the morning. I actually had time to fix Yousuf and Omar breakfast and pack them lunches for our weekly camping trip to the Texas Children's Hospital waiting rooms. This time as I approached the front desk clerk for her to hand me the wrist band and pager I was all prepared to have some funny come back to her robotic performance. This time she just handed it to me and said thank you. Well, since she didn't ask me if I knew how to put the wrist band on I actually forgot to do it! After a while Abu Yousuf noticed he wasn't wearing it. Yousuf's father and I disagree on how to put on the wrist band. Yousuf was not at all amused when his father and I were playfully fighting over who knew how to put it on right. I give in...his watch like display on Yousuf's wrist looks much more comfy then my price tag effect I always make. When they called Yousuf in the room to get prepped he darted off in the other direction. I had to catch him and carry him back in the room. There was another lady with her little girl about the same age in the room holding down her daughter as well. We glanced at each other, with a look of no affect, from the kicking and screaming we were experiencing. The normalcy from both our eyes, in truth, caused me to fight back a few tears.
Next Monday they will be increasing his chemo even more. And I will be getting my very first flu shot in my life. Not happy about that but what has to be done must be done. Meanwhile, I will make every attempt to accommodate old patterns that created happiness to new ones. Instead, of the social aspect of Eid; attending the prayers and the fellowship. I must endeavour myself to succeed in shaping this holiday with new traditions this year...for happiness sake.