A Story Of How A Nerve Cell Functions Nerves-R-Us The Moment of Truth

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The Moment of Truth

Chapter One

moment of truth

It’s a long story, but it started after Hughie’s summer day camp, Chandler Neuberger’s sports camp, ended on July 11th. Hughie had a big day, because the camp always plans a day trip to Six Flags Great America, an amusement park, and campers leave at 8:45 a.m. and don’t return until 4:30 p.m. The day was much longer than Hughie was used to, but the trip was a great success. I picked up Hughie 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 next week was filled with lots of reading, relaxation and no stress. It was great for everyone to not have to race here and there, drop off and pick up on the hour! What started out as an initiative to save some money and squeeze out an extra schedule during just one term of summer camp turned into a lifesaver…

Hughie is an avid cyclist, and every morning before his sports camp he rides his bike around the block for at least an hour and a half. Suddenly, however, this week, when he had no more physical activity planned through camp, he wasn’t interested in riding his bike. He mostly retreated to his room to read; This is not unusual behavior for him, as he loves to read and can read very well. One day, however, towards the end of the week, (around July 16th) I found him reading in his beanbag chair, and when I came in later, he was asleep. I thought it was a little weird, but then nothing.

The following week, Monday, July 21st, I noticed that Hughie’s behavior was becoming quiet and reserved, which was completely out of character. He is usually a little outrageous, goofy, charming and always eager to share his latest revelations at the kitchen table while eating. I also noticed that Hughie’s left eyelid drooped. I thought maybe she got bitten by a spider like Lizzie had in her sleep. By the end of that week, I noticed that Hughie’s appetite had decreased. He was eating very little, and was sleeping. He didn’t struggle at all to go to bed. On Saturday, Lizzie had the flu, so when Hughie had a temperature on Sunday, July 27th, I assumed he had the same virus. He ate nothing at dinner, but only drank his milk and his soup. I tried to feed him a bite of some hummus on pita bread, and he choked. I thought he threw up then.

Her temperature continued to be 102F 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 which was planned to be a croquet/badminton garden party at our house on Sunday 3rd August. After parking the car at Diversey Harbor to go to the zoo, Hughie could barely walk and was having trouble breathing. He didn’t really complain but I could see on his face that breathing was a lot of work for him as we walked along the lagoon. We stopped and took a break and I gave him some Benedryl, thinking it might be an allergy. But, as we continued, he did not change, and I knew then that Hughie was seriously ill. It really scared me, and I realized that even though Hughie wasn’t complaining himself, it was serious. Sometimes kids don’t complain because they don’t want to get sick and have to go to the doctor. Then, I knew it was my duty to play the doctor and take charge, which is exactly what I did.

We rushed to our pediatrician, from Diversey Harbor, that July 29th at 3:00pm, to Howard and Asbury, in Evanston, arriving at the Trasman/Bennuk practice by 3:00pm. I had already warned the receptionist, Edna, that I was very worried, and I was sure that Hughie was seriously ill. Upon arrival, I discovered that neither partner sees our children regularly. Instead, we saw the new pediatrician who had only joined the practice a year earlier. She and I have never gotten together since joining the practice more than a year ago, because I always felt that what I knew intuitively about my children was not valuable in assessing the problem and ultimately 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 possible about their medical history. The doctor immediately asked, “Then why are you here, Hughie? You look great to me!” I suggested that since he was having trouble breathing, had a temperature of 102F three days in a row, and was not eating well, and was lethargic, he probably had an infection like pneumonia. I then suggested that we do a chest x-ray to make sure there was no respiratory infection. He then listened to Hughie’s heart rate and breathing and said: “Huggie’s lower respiratory system is excellent! No need for 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 didn’t improve. I felt very frustrated and disappointed at his lack of attention. I felt as if he completely ignored my concerns.

The next morning, I followed my instincts. I called the receptionist, Edna, and told her that I was very unhappy with Hughie’s diagnosis, and that I wanted to see another doctor, either our regular physician, Dr. Benuck, or his partner, Dr. Treisman. I was told that Dr. “X” is the only doctor available in the office on Wednesday, but that Dr. Trasman will see me on Thursday, July 31st at 2:15 pm. I accepted the invitation and then took Hughie. Alice was with me. Dr. Treisman immediately noticed Hughie’s eyelid with concern and then examined him. I gave him the same information I gave to Dr. “X”. Immediately, he showed signs of anxiety. He said “No air gets into Hughie’s left lung”…he attributed this to a mass growing in Hughie’s chest above the left lung, which if it compresses the nerves that control your eye movements, can cause a drooping effect. He also noticed that the pupil of the right eye was dilated… Within 10 minutes, he called Children’s Memorial Hospital (one of the best pediatric hospitals in the country) to do a chest x-ray of several areas, including the neck area, where he assumed the mass was located, and Then in the lung area, as well as in the CT scan.

I was suddenly overcome with fear, anxiety and a struggle to stay strong. I called my sister from the car, and started crying. I dropped Alice off at home with Anna, and headed 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 of a city and his flight was about to take off. I told him where I was, what was happening. His flight landed a few hours later, and he took a cab straight to the hospital. Before we knew it, we were talking to a pediatric oncologist in the emergency room, where they put a huggie on a respirator because his breathing was so labored. I told the nice lady she was in the wrong room, and advised her to leave, as our son did not have cancer. He smiled, “Unfortunately, we think he might be, and right now our radiologists are reviewing all of his tests to better confirm what kind of tumor he has… Later, after many denials my part, Milind’s part. , and part of my parents, we heard the bad news. Yes, it’s a malignant growth that’s quite large and it’s compressing his lymph nodes and nerve endings above his left lung. His left lung was collapsed, and the T cell fluid from the tumor where the lung. The tumor had moved both his airway and his heart to the right, so they were now blocking his breathing from his right lung. . The amazing thing was that until Tuesday, the 29th, Hughie never complained. Now, I Realized that he was stressing over food because his trachea made it nearly impossible to eat, and his oxygen levels were so inhibited that it made him tired, and nauseous.

The truth had a numbing effect on all of us that was filled with pain, anxiety and an uncertain future for all of us. My parents are strong, and Dad keeps saying, “Don’t worry, sweetie, everything will be okay.” I knew she was now seeing how strong Hughie was in bearing the pain she had quietly kept to herself. He sat in an ER bed surrounded by all the family in Chicago and happily watched Harry Potter and the Chamber of Secrets while breathing on a ventilator. He had us all tuned in for what was really important! Thank God for the resilience of children; As we were breaking down, Hughie was somehow enjoying himself…but I was terrified. What about Victoria’s party! I had to call him, and let him know we had to cancel. I called him and cried my eyes out as I told him what we were going through. He volunteered to call all the guests and explain what had happened in the most appropriate manner. I was relieved and disappointed, as he is a very dear friend, and we were looking forward to sharing the joy of marrying the wonderful Matthew. But, I had to focus on Huggie, 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 that evening (July 31st). By God’s grace, the 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, expertise 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, monitored day and night by doctors, nurses. They began administering chemotherapy immediately on August 1st, and at our first meeting with Dr. Morgan, he warned us that every child responds differently to treatment and that he couldn’t promise us anything. His initial prognosis, based on simple probabilities and statistics alone, suggested that Hughie had a 70-80% chance of recovery. My heart dropped into my lap as Dr. Morgan said this. I immediately knew that what he was really saying was that there was a 30% chance that he would not recover and die. He reminded us that Hughie was seriously ill and that we were lucky that we got him to the hospital when we did. He suggested that if Hughie responded to treatment starting on August 1st, he should be in full remission by August 29th. I was surprised that he was so sure about 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 kids do. He was diagnosed with stage 4 lymphoblastic T cell non-Hodgkin’s lymphoma. Stage 4 means that it is very advanced, but mainly confined to the lymph nodes where the tumor is located. There was some residual T cell fluid that had dripped from the cavity into the lung where it normally goes into the bloodstream, but it was limited, and therefore not leukemia. HAT was important because leukemia treatment is more intensive, and can take longer. recovery from

Pediatric cancers are different from today’s adult cancers because they grow so quickly, which helps in the recovery process; They are reduced more quickly and effectively in young children due to rapid cell growth. Now, for some good news: Hughie has been in complete remission since August 29th. Dr. Morgan advised that his goal was for Hughie to be in remission by then, with full lung function back, no tumors, and no T cells in his body; That wish was fulfilled!! And I thanked both Dr. Morgan and his assistant, Dr. Schneiderman, and with tears in my eyes, said, “Thank you for saving my son’s life!” Now, I finally saw the sun coming out from behind the clouds. (Chapter 2: Treatment Plan, will address specifically what happened between August 1st and August 29th).

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