Day 29: While You Were Sleeping

Today was not so much a long day as much as it was a hard one. Yousuf was completely put to sleep today unlike the other days. They had to do three procedures: Removing the pick line and putting in the port-a-cath in his chest, bone marrow aspiration or lumber puncture, and a spinal tap with his chemo. His blood count was very good before we started at a 10 then it dropped to an 8 after the surgeries from the amount of blood loss. He was under for about 2 hours when usually it is only 20 minutes. One of the surgeons came and called one of us to come back since Omar cannot go to the recovery room. I decided to go. I followed the doctor to the automatic double doors. He paused and pointed to the hand sanitizer dispenser on the wall for me to use before entering. As we walked back in the recovery room I was curious whether Yousuf would be awake. Sometimes he is very difficult to wake back up and other times he is awake and crying. As we walked down the hall we had to slow our pace for a bald little boy riding his tricycle across our pathway. I smiled when I saw that we had come across "traffic" and I eased up a bit. I entered the room seeing many beds with unfamiliar faces. The doctor held out his hand in the direction of an empty bed motioning to me this is where Yousuf was. So where was he? Then slightly hidden close to the curtain I saw the nurse cradling him in her arms. He was awake but very drugged. I switched places with her holding him tight hearing light whimpers from pain. I also heard him coughing sounding very badly congested. This was something new. I asked the nurse why he was coughing so much and sounded so backed up in his chest. She said that is usual from the breathing tube they put down their throat. They normally do that when they are completely put down. We will have our next conference as we did when deciding on the treatment plan. We will figure out where we are on the road map as soon as the doctor calls with the results from the bone marrow. Our meeting will take place on Wednesday, as well as finger pricking, to decide whether or not he will need a blood transfusion after the amount of blood loss he had. The doctor did say that no matter which road we do go down for treatment each one of those maps requires weekly spinal taps for the next 4-5 weeks. During this next month of weekly fasting and sedation is called the consolidation phase of the 3 1/2 year treatment. Depending on if he is truly in remission we will know that he is out of the induction phase of the therapy which is the first month. Remission is the goal and insha'Allah we will hear good news on Wednesday telling us that we have achieved that goal.

We checked in to the OR (operating room) at 6:30am and they wheel chaired Yousuf out by 1:35pm. Yousuf was very weak, not able to walk and sensitive to any movement. He is still in a lot of pain and complaining from more hunger pains. I have to get up every few minutes taking care of many of his requests and troubles. He was having problems going to the bathroom so I called the doctor a little worried. She called in a prescription for him and recommended a few things. She called back a couple hours later (around 7pm) to check on him to see if he was better. I've never experienced a doctor like that before. Masha'Allah. I have to say Yousuf's care at Texas Children's Hospital has been amazing. His doctor got him in the OR as early as she could today and as she put it, "I had to stand on my head to get Yousuf in that early." She genuinely cares about Yousuf, his progress and his treatment during this period for him. She is careful to make sure we understand what's going on and is eager to help or answer questions. It is difficult NOT to develop love for such a person as Dr. Judith Margolin, as she is the helper in saving Yousuf's life; while Yousuf is the warrior and Allah is The Curer. As formal and professional as our relationship may be her quest to make Yousuf better and her sincere efforts to see him get well transpires immeasurable love for her hidden in my heart. For now Yousuf is taking a week off from chemo and any other medications. She said he will be a tiny bit back to normal for this week…a week. Any glimpse of the old Yousuf would be nice. I sure miss my son who has been transformed by this into someone I barely recognize.