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The Moment of Truth
The moment of truth
It’s a long story, but it started after Hughie’s Summer Day Camp, Chandler Newberger’s Sports Camp, ended on July 11th. Hughie had a great day, as the camp always plans a trip to Six Flags Great America, an amusement park, and the campers leave at 8:45am and don’t return until 4:30pm. It was a longer day than Hughie was used to, but the trip was a great success. I picked Hughie up and immediately took him to Noah’s 7th birthday party at Wilmette Bowling Lanes, which didn’t end 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 that everyone does not have to race here and there, drop off and pick up on the air! What started simply as a venture both to save some money, and to decompress from excessive schedules, by doing one term of the summer camp, turned into a life saver …
Hughie is an avid cyclist, and every morning before his sports camp, he would ride at least half an hour alone around the neighborhood. Suddenly, however, this week, when he had no physical activity planned at camp, he was not interested in riding his bike. He retired mostly to his room to read; this is not an atypical behavior for him really, as he likes reading, and he is very good. One day, however, later in the week, (about July 16th) I found him reading in his beanbag chair, and when I came later, he had fallen asleep. I thought it was a little strange, but nothing more at the moment.
The next week, Monday July 21, I noticed that Hughie’s behavior became quiet, and reserved, which is totally out of character. He is usually a little naughty, goofy, charming, and always eager to share his recent revelations at the kitchen table while eating. I also noticed Hughie’s eyelid on his left eye drooped. I thought maybe she was bitten by a spider like happened to Lizzie during her nap. By the end of that week, I noticed that Hughie’s appetite had decreased. He ate little, he slept. He didn’t fight to go to bed at all. Lizzie had the flu on Saturday, so when Hughie had a temperature on Sunday July 27th, I assumed he had the same virus. He eats nothing at dinner, but only drinks his milk and his soup. I tried to get him to take a bite of some hummus on pita bread, and he gagged. I thought he was throwing up at the time.
Its temperature of 102F continues on Monday. On 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 planned for a Croquet/Badminton Party in our garden on Sunday 3rd August. After they parked the car in Diversey Harbor to go to the zoo, Hughie couldn’t walk, and had a lot of breathing problems. He didn’t really complain but I could see on his face that while we walked on the lagoon, breathing was a lot of work for him. We stopped and took a break and I gave her some benedryl, thinking it might be allergies. But as we went on, it didn’t change, and I knew then that Hughie was seriously ill. It really scared me, I realized that even though Hughie wasn’t complaining on his own, it was serious. Sometimes children don’t complain because they don’t want to get sick, and they have to go to the doctor. I knew then that it was my responsibility to play Doctor, and take charge, which is exactly what I did.
We rushed to see our Pediatrician, from Diversey Harbor, this July 29th at 3:00 pm, to Howard and Asbury, in Evanston, at the Traisman/Benuck practice at 3:00 pm. I had already warned Edna, the Receptionist, that I was very concerned, and that I was certain that Hughie was seriously ill. When I arrived, I discovered that none of the Partners who regularly see our children were available. Instead, we saw the new Pediatrician who had just joined the practice a year before. He and I have never gotten along since he joined the practice more than a year ago, because I always make them feel that what I know intuitively about my children is of little value in evaluating the problem, and finally making a diagnosis. I always take my kids to the doctor when they’re sick, and I usually have some idea what’s wrong with them. I make a habit of giving the doctor as much information as I can about their medical history. The 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 days in a row of 102F, and that he hadn’t been eating well, and was lethargic, that maybe he had an infection like Pneumonia . Then I suggested that we take a chest x-ray to confirm that there was no respiratory infection. He then listens to Hughie’s heart rate, and breathing, and says, “Hughie’s lower breathing is excellent! A chest X-ray is not necessary.” He gave Hughie a breathing treatment for allergies, and a prescription for Zyrtec, a common allergy medicine for children and adults, and told us to come back in a week, before we left for Colorado, if Hughie’s breathing hadn’t improved. I left feeling very desperate and disappointed at his lack of attention. I felt as if he was totally ignoring my concerns.
The next morning, I followed my instincts. I called and spoke to the receptionist, Edna, and told her that I was not satisfied with Hughie’s diagnosis, and that I wanted to see another doctor, either Dr. Benuck, our regular doctor, or his partner, Dr. Traisman. . I was told that Dr. “X” was the only Doctor available in the office on Wednesday, but Dr. Traisman would be available to see me at 2:15 pm on Thursday, July 31st. I accepted this invitation, and took Hughie then. I had Alice with me too. Dr. Traisman immediately noticed Hughie’s eyelids fluttering with concern, and then examined him. I gave him the same information that I gave Dr. “X”. Suddenly, he showed signs of concern. He stated “Hughie has no air going through his left lung”… He attributed this to a mass growing in Hughie’s chest above the left lung, which is compressing the nerves that control eye movement , could cause the collapse effect. He also noticed that the pupil of the right eye was dilated… Within 10 minutes, he was calling Children’s Memorial Hospital (one of the best pediatric hospitals in the country) to schedule a multi-site chest X-ray, which includes the neck area. it was assumed that the mass was located, and then down to the lung area, as well as CT Scans.
I was suddenly overcome with fear, anxiety, and difficulty staying strong. I called my sister in the car, and I started crying. I dropped Alice off at home with Anna, and raced downtown to the hospital to begin 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 happened. His flight landed a few hours later, and he took a taxi directly to the hospital. Before we knew it, we were talking to a Pediatric Oncologist in the Emergency Room, where Hughie was on a ventilator because his breathing was so restricted. I told the nice lady that she was in the wrong room, and suggested that she leave, because our son did not have cancer. He smiled and said, “unfortunately, we think it may be, and at the moment we have the radiologists review all his tests to get a better confirmation of what kind of tumor he has… Later, after many denials 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 the lymph nodes above his left lung, and the nerve endings. His left lung was collapsed, and T-cell fluid from the tumor took over the area where the lung would normally be. The tumor had moved both his trachea and heart to the right side, so he was now being prevented from breathing from his right lung. The amazing thing is that until Tuesday the 29th, Hughie never complained. Now, I understand that he was gaged on the food because his trachea made eating food almost impossible, and his oxygen level was so inhibited that it made him tired .with nausea.
The truth left a numbing effect on all of us filled with pain, anxiety, and an uncertain future for all of us. My parents are strong, and dad kept saying, “Don’t worry honey, everything will be fine.” I knew now he saw how strong Hughie was to endure the pain he had kept silent to himself. He was sitting in the ER bed, surrounded by all his family in Chicago, and while breathing on a respirator, he happily watched Harry Potter and the Chamber of Secrets. He hooked us all out for what was really important! Thank God for the resilience of children; while we were falling apart, Hughie was having fun somehow… But I was panicking. And Victoria’s party! I had to call him, and let him know we would have to cancel. I called him and cried my eyes out as I told him what we were going through. He wanted to take on the task of calling all the guests and explaining what happened in the most appropriate way. I was both relieved and disappointed, because she is a good friend, and we were looking forward to her sharing her joy at being married to the wonderful Matthew. But I had to focus on Hughie, and what’s important: life.
Needless to say, once they had a room on the Oncology / Hematology floor, Hughie was immediately admitted to the hospital tonight (July 31). By the grace of God, Chief of Oncology, Dr. Elaine Morgan was “On Call” the night she was admitted, so she became his patient. He is a brilliant doctor, and I am grateful that his experience, skills, and sincere interest and caring attitude allowed me to relax and feel that we were in the best possible hands. Hughie was in the hospital for 6 nights, doctors, nurses watched carefully, day and night. Chemotherapy was started immediately on August 1st, and at our first meeting with Dr. Morgan, he warned us that every child reacts to treatment differently, and that he could not promise us anything. His initial prognosis, based solely on general probability and statistics, suggested that Hughie had a 70-80% chance of recovery. When Dr. Morgan said that, my heart fell into my lap. Immediately I knew that what he was really saying was that there was a 30% chance that he would not recover, and he would die. did It was suggested that if Hughie responds to the treatment that was started on August 1st, then he should be in full remission by August 29th. I was surprised that he was so sure of the treatment plan; but, at the same time, Dr. Morgan wanted us to understand that he could not promise that Hughie would respond to the Plan. Not all children do this. He was diagnosed with Stage 4 Lymphoblastic T Cell Non-Hodgkin’s Lymphoma. Stage 4 means that it was very advanced, but it was essentially limited to the lymph nodes where the tumor was located. There was some residual T cell fluid that flowed from the cavity where the lung usually is in the blood, but this was limited, and therefore not Leukemia. recover from
Pediatric cancers are different from today’s adult cancers because although they grow so quickly, it helps in the recovery process; they also decline more quickly and effectively due to rapid cell growth in young children. Now for some good news: Hughie has been in complete remission since August 29th. Dr. Morgan suggested that his goal was to have Hughie in remission at this time, with full lung function returned, no tumor, and no T cells in his body; wish come true!! Afterwards, I thanked both Dr. Morgan and his Assistant, Dr. Schneiderman, and tearfully said, “Thank you for saving my son’s life!” Now at last I saw the sun creeping out from behind the clouds. (Chapter 2: The treatment plan, will address the specifics of what happened between August 1st, and August 29th).
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