The Moment of Truth
It is a long story, but it began after Hughie’s Summer Day Camp, Chandler Newberger’s Sports Camp, was finished July 11th. Hughie had a big day, as the camp always plans a day trip to Six Flags Great America, an amusement park, and the campers leave at 8:45am and do not return until 4:30pm. That is a much longer day than Hughie is used to, but the trip was a great success. I picked Hughie up and took him immediately to Noah’s 7th birthday party at Wilmette Bowling Lanes, which didn’t finish until 7pm. So, Hughie’s week ended on a high note, and the following week was filled with lots of reading, relaxation, and no stress. It was great for everybody not to have to race here and there, dropping off and picking up on the hour! What started merely as a venture to both save some money, and to decompress from over-scheduling, in doing only one term of summer camp, turned out to be a Life Saver…
Hughie is an avid cyclist, and every morning before his sports camp he would ride at least a ½ hour on his own around the block. Suddenly, however, this week, when he had no more physical activity planned through camp, he was not interested in riding his bike. He retreated mostly to his room to read; this is not untypical behavior for him really, as he loves reading, and reads very well. One day, however, later in the week, (around July 16th) I found him reading on his beanbag chair, and when I came by later, he had fallen asleep. I thought it was a little strange, but nothing more at that time.
The next week, Monday, July 21st, I noticed that Hughie’s demeanor was becoming quiet, and reserved, which is totally out of character. He is normally a little obnoxious, goofy, charming, and always eager to share his recent revelations at the kitchen table while eating. I also noticed that Hughie’s eyelid on his left eye was drooping. I thought maybe he had been bitten by a spider like had happened to Lizzie during her nap. By the end of that week, I noticed that Hughie’s appetite had diminished. He was eating very little, and was sleepy. He didn’t fight going to bed at all. Saturday, Lizzie had the flu, so when Hughie had a temperature on Sunday, July 27th, I assumed that he had the same virus. He ate nothing at dinner, but only drank his milk, and his soup. I tried to get him to take one bite of some hummus on pita bread, and he gagged. I thought he was throwing up at the time.
His temperature of 102F continued on Monday. Tuesday, we decided to go to the Lincoln Park Zoo because it was a beautiful day, and we had nothing planned. On our way, we made a quick stop to order Liquor for Victoria’s Wedding Shower that was planned to be a Croquet/Badminton Garden Party at our house on Sunday, August 3rd. After parking the car at Diversey Harbor to go to the zoo, Hughie could hardly walk, and was having a great deal of trouble breathing. He didn’t really complain but I could see on his face that as we walked along the Lagoon, breathing was a lot of work for him. We stopped and took a break and I gave him some benedryl, thinking it might be allergies. But, as we continued, he didn’t change, and I knew then Hughie was seriously ill. It really scared me, and I realized that even though Hughie was not complaining per se, that it was serious. Sometimes kids don’t complain because they don’t want to be sick, and have to go to the doctor. Then, I knew that it was my responsibility to play Doctor, and take charge, which is exactly what I did.
We rushed to our Pediatrician, from Diversey Harbour, that July 29th at 3:00pm, arriving at Howard and Asbury, in Evanston, at the Traisman/Benuck practice by 3:00pm. I had already alerted Edna, the Receptionist, that I was very concerned, and that I was sure that Hughie was seriously ill. Upon arrival, I discovered that neither of the Partners who regularly see our children was available. Instead, we saw the new Pediatrician who had just joined the practice one year earlier. He and I have never gotten along since he joined the practice over a year ago, because I always am made to feel that what I know intuitively about my kids is not valuable in assessing the problem, and ultimately making a diagnosis. I always take my kids to see the doctor when they are sick, and usually I have some idea what is wrong with them. I make it a habit to give the doctor as much information as I can about the history of their illness. This doctor immediately asked, “So why are you here, Hughie? You look great to me!” I suggested that because he was having trouble breathing, that he had a temperature for three consecutive days of 102F, and that he wasn’t eating well, and was lethargic, that maybe he had an infection like Pneumonia. I then suggested that we get a Chest X-ray to confirm that there was no respiratory infection. He then listened to Hughie’s heart beat, and breathing, and said:” Hughie’s lower respiratory is excellent! It is not necessary to get a Chest X-ray.” He gave Hughie a breathing treatment for allergies, and a prescription for Zyrtec, a common allergy medication for children and adults, and told us to come back in a week, before we left for Colorado, if Hughie’s breathing wasn’t improved. I left feeling very dejected and disappointed in his lack of attentiveness. I felt as if he totally disregarded my concerns.
The next morning, I followed my instincts. I called and talked to the Receptionist, Edna, and told her that I was very dissatisfied with the diagnosis of Hughie, and that I wanted to see another Doctor, either Dr. Benuck, our regular Physician, or his Partner, Dr. Traisman. I was told that Dr. “X” was the only Doctor available in the office Wednesday, but Dr. Traisman would be available to see me at 2:15pm Thursday, July 31st. I accepted that invitation, and took Hughie then. I had Alice with me, too. Dr. Traisman immediately noticed Hughie’s eyelid with concern, and then examined him. I gave him all the same information that I had given Dr. “X”. Immediately, he showed signs of concern. He stated ” Hughie has no air passing in hisleft lung”…He attributed this to a mass growing in Hughie’s chest above the left lung, which if it compressed the nerves which control your eye movement, could cause the drooping effect. He also noticed that the right eye pupil was dilated…Within 10 minutes, he was calling Children’s Memorial Hospital (one of the best Pediatric hospitals in the nation) to schedule a Chest X-rays of many locations, including the neck area where he supposed the mass was located, and then down into the lung area, as well as CT Scans.
I was suddenly overcome with fear, anxiety, and struggling to stay strong. I called my sister from the car, and started crying. I dropped Alice at home with Anna, and raced downtown to the hospital to start the race to save Hughie’s life! Annie met us at the hospital, and I called Milind on his cell phone. He was at the airport in some city and his flight was about to take off. I told him where I was, and what was going on. His flight landed a couple hours later, and he took a cab directly to the hospital. Before we knew it, we were talking to a Pediatric Oncologist in the Emergency room, where they Hughie on a respirator because his breathing was so inhibited. I told the nice lady that she was in the wrong room, and suggested that she leave, because our son did not have cancer. She smiled and said, “unfortunately, we think that he may, and right at this moment we have the radiologists reviewing all of his tests to get a better confirmation as to what kind of tumor he has…Later, after much denial on my part, Milind’s part, and my parents part, we heard the bad news. Yes, it is a malignant growth that is quite large and it is compressing on his lymph nodes above his left lung, and the nerve endings. His left lung was collapsed, and the T Cell fluid from the tumor had taken up the area where the lung normally is located. The tumor had moved both his trachea and his heart over to the right side, so they were now obstructing his breathing out of his right lung. The amazing thing was that until Tuesday, the 29th, Hughie never complained. Now, I understood that he had gagged on the food because his trachea had made eating almost impossible, and his oxygenation level was impeded so much that it made him tired, and nauseous.
The truth left a numbing effect on all of us that was filled with pain, concern, and an uncertain future for all of us. My parents are strong, and Dad kept saying, “Don’t worry sweetie, everything is going to be all right.” I knew he was now seeing how strong Hughie was to endure the pains that he had quietly kept to himself. He sat in the ER bed, surrounded by all the family he has in Chicago, and while breathing into a respirator, he gleefully watched Harry Potter and The Chamber of Secrets. He had tuned us all out for what was really important! Thank God for the resiliency of children; as we were crumbling, Hughie was somehow enjoying himself…But I was panicing. What about Victoria’s party! I had to call her, and let her know we would have to cancel. I called her and cried my eyes out as I told her what we were going through. She willingly took over the task of calling all of the guests and explaining what had happened in the most appropriate manner. I was relieved and disappointed, as she is a very dear friend, and we were looking forward to sharing her joy of getting married to wonderful Matthew. But, I had to focus on Hughie, and what is important: life.
Needless to say, once they had a room on the Oncology/Hematology floor, Hughie was immediately admitted to the hospital that evening (July 31st). By the grace of God, the Chief of Oncology, Dr. Elaine Morgan was “On Call” the night he was admitted, so he became her patient. She is a brilliant doctor, and I am thankful that her experience, aptitude, and sincere interest and caring attitude allowed me to relax and feel that we were in the best hands possible. Hughie was in the hospital for 6 nights, watched closely by doctors, nurses, day and night. They started administering Chemotherapy immediately on August 1st, and in our first meeting with Dr. Morgan, she warned us that each child responds to treatment differently, and that she could not promise us anything. His initial prgnosis, based solely on general probabilities and statistics, suggested that Hughie had a 70-80% chance of cure. When Dr. Morgan said this, my heart dropped into my lap. I immediately knew that what she was really saying was that there was a 30% chance that he would not be cured, and would die She reminded us that Hughie was gravely ill, and that we were lucky that we brought him into the hospital when we did. She did suggest that if Hughie responded to the treatment that they were starting on August 1st, then he should be in Full Remission by August 29th. I was amazed that she was so sure of the treatment plan; but, at the same time, Dr. Morgan wanted to make us understand that she could not promise that Hughie would respond to the Plan. Not all kids do. He was diagnosed with Stage 4 Lymphoblastic T Cell Non-Hodgkin’s Lymphoma. Stage 4 means that it was very advanced, but was essentially limited to the lymph node where the tumor was located. There was some residual T Cell fluid that had dripped from the cavity where the lung usually is into the blood stream, but this was limited, and therefore not Leukemia.hat was important because the treatment of Leukemia is more intense, and can take longer to recover from.
Pediatric cancers differ from adult cancer today because although they grow so rapidly, that helps in the recovery process; they also recede more quickly and effectively because of the rapid cell growth in young children. Now, for some good news: Hughie has been in Remission fully since August 29th. Dr. Morgan suggested that her goal was to have Hughie in remission by that time, with full lung function returned, no tumor, and no t cells in his body; that wish came true!! And I thanked both Dr. Morgan, and her Assistant, Dr. Schneiderman, and with tears in my eyes said, “Thank you for saving my son’s life!” Now, I finally saw the sun creeping out from behind the clouds. (Chapter 2: The treatment Plan, will address the specifics of what went on between August 1st, and August 29th).