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The Moment of Truth
The first chapter
The moment of truth
It’s a long story, but it started after Huey’s summer day camp, the Chandler Newberger Sports Camp, ended on July 11. Huey had a big day because the camp always plans a day trip to Six Flags Great America, an amusement park, and the campers leave at 8:45 a.m. and don’t get back until 4:30 p.m. It’s a much longer day than Huey is used to, but the trip was a great success. I picked up Huey and immediately took him to Noah’s 7th birthday party at Wilmette Bowling Lanes which didn’t end until 7pm. So Hugh’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 not to have to drive back and forth getting off and taking a class! What started out as just an attempt to both save money and get rid of over-planning by doing just one summer camp period turned out to be a lifesaver…
Huey is an avid cyclist, and every morning before his sports camp he would ride around the block by himself for at least half an hour. But suddenly this week, when there were no physical activities scheduled at camp, he was no longer interested in cycling. He retired chiefly to his room to read; This behavior is really not atypical of him as he likes to read and is a very good reader. However, one day later in the week (around July 16th) I found him reading on his chair and when I arrived later he was asleep. I thought it was a bit strange, but nothing more at the time.
The following week, Monday July 21st, I noticed Hugh’s demeanor becoming quiet and reserved, which was completely out of character. He’s usually a bit obnoxious, goofy, charming, and always willing to share his recent discoveries at the kitchen table while eating. I also noticed that Huey’s eyelid on his left eye had drooped. I thought maybe she had been bitten by a spider like Lizzie had during her nap. At the end of this week I noticed that Hugh’s appetite had decreased. He ate very little and was sleepy. He didn’t struggle at all when he went to sleep. Lizzie had the flu on Saturday so when Hughie had a fever on Sunday July 27th I assumed he had the same virus. He didn’t eat anything for dinner, only drank milk and soup. I tried to get him to take one bite of the hummus on the pita bread and he balked. I thought he was throwing up at the time.
His temperature of 102F continued on Monday. On Tuesday we decided to go to Lincoln Park Zoo because it was a beautiful day and we had nothing planned. On the way we made a quick stop to order a drink for Victoria’s bridal shower which was planned as a croquet/badminton garden party at our house on Sunday 3rd August. After parking the car in Diversey Harbor to go to the zoo, Huey could barely walk and was struggling to breathe. He didn’t really complain, but I could see in his face that breathing was a lot of work for him as he walked along the lagoon. We stopped and took a break and I gave him benedryl thinking it might be an allergy. But as we went on he didn’t change and I knew Huey was seriously ill. It really scared me and I realized that even though Huey wasn’t complaining per se, it was serious. Sometimes children don’t complain because they don’t want to be sick and have to go to the doctor. Then I knew it was my duty to play the Doctor and take charge, and that’s exactly what I did.
We rushed to our pediatrician from Diversey Harbor that on July 29th at 3:00 p.m., we arrived at Howard and Asbury, Evanston, at the Treisman/Benuka practice by 3:00 p.m. I had already warned Edna, the receptionist, that I was very worried and I was sure Huey was seriously ill. When I arrived, I found that none of the partners who regularly visit our children were available. Instead, we saw the new pediatrician who had just joined the practice a year earlier. He and I have never gotten along since he joined the practice over a year ago because I always feel that what I intuitively know about my children is not valuable in assessing and ultimately diagnosing the problem. I always take my kids to the doctor when they are sick and I usually have some idea what is going on with them. I have a habit of giving the doctor as much information as possible about their medical history. This doctor immediately asked, “Why are you here, Hugh? You look great to me!” I suggested that since he was having trouble breathing, had a temperature of 102 F for three days in a row, was not eating well, and was lethargic, he might have an infection like pneumonia. I then suggested we get a chest x-ray to confirm there was no respiratory infection. He then listened to Huey’s heartbeat and breathing and said, “Huey’s lower airway is great! No need for a chest x-ray.” He gave Hugh an airway to treat his allergies and prescribed Zyrtec, a common allergy medication for children and adults, and told us to come back in a week before we leave for Colorado if Hugh’s breathing didn’t improve. I left feeling very depressed and disappointed at his lack of care. I felt like he was completely oblivious to my concerns.
The next morning I followed my instincts. I called and spoke to the receptionist, Edna, and told her that I was very unhappy with Huey’s diagnosis and that I wanted to see another doctor, either Dr. Benuck, our regular doctor, or his partner, Dr. Treisman. I was told that Dr. “X” is the only doctor available in the office on Wednesday, but that Dr. Treisman will be available for me on Thursday, July 31st at 2:15 PM. I accepted this invitation and then took Huey. Alice was also with me. Dr. Treisman immediately noticed Huey’s eyelid with concern and then examined him. I gave him all the same information I had given Dr. “X”. Immediately he expressed concern. He claimed that “Hughie has no air in his left lung”… He attributed this to a mass growing in Hughie’s chest above his left lung, which can cause drooping by compressing the nerves that control your eye movement. He also noticed that the pupil of his right eye was dilated…within 10 minutes he called Children’s Memorial Hospital (one of the best pediatric hospitals in the country) to schedule a chest x-ray of many places, including the neck area where he thought the mass was found and then down into the lung area as well as a CT scan.
I was suddenly overwhelmed with fear, anxiety, and difficulty keeping my strength up. I called my sister from the car and started crying. I left Alice at home with Anna and ran downtown to the hospital to start the race to save Huey’s life! Annie met us at the hospital and I called Milind on his cell phone. He was at an airport in a city and his flight was about to take off. I told him where I was and what was going on. 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 were putting Hugh on a respirator because his breathing was so labored. I told the nice lady she was in the wrong room and suggested I leave as our son does not have cancer. She smiled and said, “Unfortunately, we think he might, and right now we have radiologists reviewing all of his tests to get a better confirmation of what type of tumor he has… Later, after many denials on my part, from Milind’s side and my parents we heard the bad news. Yes, it’s a malignant growth which is quite large and it’s pressing on his lymph nodes above his left lung and the nerve endings. His left lung had collapsed and the T cell fluid from the tumor was occupied the area where the lungs normally are. The tumor had moved both his trachea and his heart to the right side, so they were now preventing him from breathing out of his right lung. . The most amazing thing was that until Tuesday the 29th, Huey never complained. Now I realized that he had choked on his food because his trachea had made eating almost impossible and his oxygen levels were so compromised that it was making him tired and nauseous.
The truth had a chilling effect on all of us, filled with pain, worry and an uncertain future for all of us. My parents are strong, and my dad kept saying, “Don’t worry, honey, it’s going to be okay.” I knew he could see now how strong Huey was to bear the pain he had quietly kept to himself. He was sitting in the emergency room, surrounded by all the family he has in Chicago, watching Harry Potter and the Chamber of Secrets while breathing in a respirator. He had us all tuned in to what was really important! Thank God for children’s endurance; while we were crumbling, Huey was kind of enjoying himself…But I was panicking. What a party for Victoria! I should have called her and told her we would have to cancel. I called her and cried my eyes out telling her what we were going through. She gladly took over the task of calling all the guests and explaining what had happened in the most appropriate way. I was relieved and disappointed because she is a very dear friend and we were looking forward to sharing her joy at marrying the wonderful Matthew. But I had to focus on Huey and the most important thing: life.
Needless to say, once they had a room on the Oncology/Hematology floor, Huey was immediately admitted to the hospital that evening (July 31st). By the grace of God, Dr. Elaine Morgan, Head of Oncology, was “on call” the night she was admitted, so became her patient. She is an excellent doctor and I am grateful that her experience, ability, genuine interest and caring attitude allowed me to relax and feel that we were in the best hands. Huey was in the hospital for 6 nights, carefully watched by doctors and nurses day and night. They immediately started chemotherapy on August 1st, and at our first appointment with Dr. Morgana, she warned us that every child responds to treatment differently and that she couldn’t promise us anything. His initial prognosis, based only on general probabilities and statistics, indicated that Hughie had a 70-80% chance of recovery. When Dr. Morgan said that, my heart dropped into my lap. I immediately realized that what she was actually saying was that there was a 30% chance that he would not be cured and die. She reminded him that Huey was seriously ill and we were lucky to get him to the hospital. did. She advised that if Huey responded to the treatment they started on August 1st, he should be in full remission by August 29th. I was surprised that she was so confident about the treatment plan; but at the same time, Dr. Morgan wanted to make it clear to us that she couldn’t promise that Huey 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 it was very advanced but basically confined to the lymph node where the tumor was. A small amount of T-cell fluid had dripped from the cavity where the lungs normally are, leaking into the bloodstream, but it was limited and therefore not a case of leukemia. This was important because leukemia treatment is more intensive and can take longer. recover from.
Childhood cancer today is different from adult cancer because even though they grow so fast, it helps in the recovery process; they also recede more quickly and efficiently because of rapid cell growth in young children. Now for some good news: Huey has been in full remission since August 29th. Dr. Morgan advised that her goal was to have Hughie in remission by then, with full lung function, no tumor, and no t cells in his body; this wish came true!! And I thanked both Dr. Morgan and her assistant, Dr. Schneiderman, and tearfully said, “Thank you for saving my son’s life!” Now I finally saw the sun peeking out from the clouds. (Chapter 2. The treatment plan will address the specifics of what happened between August 1 and August 29).
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