CONNELL'S JOURNEY OF COURAGE AND STRENGTH

This is the story of my sweet, lovable, beautiful son, Connell Nicholas Anastasi. I became pregnant with Connell in October 1997, and my husband, Joe, and I announced the news on Thanksgiving Day. What an appropriate day to share our excitement and our wonderful secret! Both families were very happy for us; we were soon to become a family of six. Connell is our fourth child - he is the little brother to Joseph, Eireann (pronounced Erin), and Brendan. He was lucky to be born into a large family and received much love and affection from his eleven cousins, his many aunts and uncles, his mom-mom and pop-pop, and his grandpop. Connell had a contagious personality, and he touched the lives of so many people.

My pregnancy with Connell was extremely uneventful. I was very fortunate to have four easy pregnancies, labors and deliveries. Connell was born on a beautiful, sunny, summer day. His birthday is July 21, 1998, and ironically enough, his horoscope is Cancer. I was induced with Connell, only because my third child was born seventeen minutes after arriving at the hospital. I didn't want to risk delivering at home, or worse yet, in the car. My husband and my mom were with me as Connell entered the world at 12:35 p.m., weighing 7 pounds, 3 ounces. Strange how some things work out - my mom planned to be at the delivery of my third child, but because of Brendan's quick arrival, she missed it. Maybe, she was truly meant to witness the arrival of Connell, since later in his life, she would also witness his departure.

Connell was an extraordinary infant and toddler. From the beginning, there was something very different about him. I could never put my finger on it, and I could only describe it as "different." I now know the word I searched for was "angelic." Connell was truly our angel on Earth! He was calm, peaceful and content. His personality was unique, and the qualities he demonstrated filled me with awe and made me so proud! Connell was lovable and always willing to give a hug or a kiss; he was a "ham" and liked to dance, sing, play sports and "shake his bootie"; he was placid and easy-going, always willing to wait his turn; he was extremely generous, always wanting to share his things and his love; he was funny without trying to be; he was playful and loved to have fun with his sister and brothers; but, more than anything, he was brave, strong and full of courage - he fought a fight that no child should have to fight. Although Connell is no longer with us, here on Earth, he is our hero and our inspiration. He accomplished, in two years, what some will never do, despite long lives. He taught us lessons about life and love, and, for that, we are grateful. In order to know Connell, as completely as possible, I will also mention some of the things that he wasn't. He was not a good eater - picky from the very beginning; he was not one to enjoy visits to the Easter Bunny or Santa Claus; he was definitely not interested in learning to go "potty"; and he was not very cooperative when getting his ears cleaned or his toenails and fingernails cut. It is all of these things, plus much more, that made Connell who he was. I long and ache to hear his voice and watch him grow! I miss holding him in my arms; I miss him jumping onto my lap . . . and on my bed; I miss the feel of his arms around my neck; I miss the touch of his kiss on my cheek; I miss the weight of his head on my shoulder; I miss him needing me, like I need him. There is nothing I don't miss about Connell!

As a young infant Connell had a problem with his eyes, diagnosed as exotrophia (outward turning of the eyes), at four months of age. He was seen at St. Christopher's Hospital for Children in Philadelphia, and a second opinion was gotten at Will's Eye Hospital, also in Philadelphia. We decided to have him followed at St. Christopher's Hospital, since the chief of ophthalmology would direct his care. For five months we patched Connell's eyes, alternating left to right, each day. It was hoped that Connell's exotrophia would resolve on it's own, however, at nine months of age, it was decided that surgery was in his best interest. He underwent surgery in April of 1999 - three of his four eye muscles were manipulated, and for awhile the extrophia seemed improved, but not perfect. After his eye surgery in April, but before July, Connell presented with a new symptom, diagnosed as ptosis (drooping eyelid). The doctor explained that the ptosis was unrelated to the extrophia; the ptosis was a cosmetic issue, strictly cosmetic he said, and it could be corrected at the age of three.

Connell developed as a normal toddler would; he walked at 15 months of age (a little later than my other children, but no big deal), talked extremely well by 18 months of age, climbed on the furniture, as if it were a playground and mastered the steps quite early. His eyes were never perfect, and towards the end of summer, 2000, Connell's ptosis significantly worsened. What used to involve mostly his right eye, was now involving both eyes. Unfortunately, I kept telling myself, "We know about this problem, and when Connell turns three, it will be fixed." In August, while on vacation, Connell put his hand over his right eye and said, "Mommy, boo-boo, hurt." That was it - no crying, no prolonged complaining. Then the following week, he said it again. As the days and weeks went on, Connell began to get cranky (very unusual for him), had a decreased appetite, was waking through the night, and demonstrated some inward turning of his right eye. Eventually, he became very lethargic and vomited three or four times, in a two-week span. I began to put two and two together. I had a sick feeling that Connell was seriously ill, and whatever it was, it was not good.

On Friday, September 8, 2000, I phoned Connell's eye surgeon and explained the symptoms. I remember saying, "Do you think there could be something pushing (meaning a tumor, but too afraid to say that word) and creating pressure to cause the eye deviation?" The doctor informed me that children, with previous eye deviations and past surgery, could sometimes exhibit future eye deviations. He said adjustments are sometimes needed, but it was nothing to worry about. Despite his words, my feeling of doom heightened, and I became increasingly anxious. The following day, Saturday, I brought Connell to his pediatrician and she ordered some blood work and a CT scan. On Sunday, I realized I could no longer deny my Îsick feeling' and took Connell to the ER at St. Christopher's Hospital. A CT scan revealed hydrocephalus (fluid on the brain), and an MRI revealed the tumor that caused the hydrocephalus. That evening Connell had a temporary, external shunt placed. On Tuesday, September 12, 2000, Connell underwent eight hours of surgery, only to be told "we didn't get it all". On September 14, 2000, we received the news we were waiting for - the tumor was a pilocytic astrocytoma (benign); our prayers were answered . . . or so we thought! As discharge approached, we were informed that chemotherapy was recommended, because of the tumor's location. Hence, our trip to Children's Hospital of Philadelphia (CHOP).

On October 17, 2000, we met with an oncologist at CHOP. Unfortunately, on that day, our lives changed, in a way that no parent should ever know. Yes, they also recommended chemotherapy; however, they recommended a vigorous protocol. After the pathology department at CHOP reviewed Connell's slides and scans, his tumor was Îupgraded' to an anaplastic astrocytoma (malignant). Connell, and we, we were about to meet our greatest challenge.

On October 23, 2000, Connell had a port inserted under the skin of his left chest. Through this port, he was to receive his chemotherapy. At the same time, a permanent VP shunt was inserted, in order to prevent his ventricles from enlarging. On the evening of his surgery, while in the PICU, Connell's port was improperly accessed by a surgical resident. Despite my protests and questions, he proceeded to access the port without sterile technique and without using standard procedure. Connell was discharged to home on October 24, 2000, and his port remained accessed. He returned to the clinic on October 26, 2000 to start the induction phase of his chemotherapy treatment. While in the clinic, receiving fluids, I noticed that Connell's gown was wet. It was discovered that there was fluid dripping from the port site, and his chest was reddened and inflamed. Due to improper technique, while originally accessed, the port had infiltrated. Although Connell's port was found to be usable, after being reaccessed, in the clinic, the damage from being accessed improperly, while in the PICU, began to manifest itself. Connell's port site became severely infected, and he developed cellulitis. On October 30, 2000, at 11:00 p.m., Connell was taken to the OR, and the troubled port was removed. Because the infection was severe, the surgeon was unable to close the site, and Connell was left with a hole in his chest. This hole was unpacked, repacked and dressed, twice daily for several weeks. This procedure was painful and traumatic for Connell. Despite his dose of Morphine before each procedure, Connell was fearful and, obviously, in pain. Because Connell no longer had IV access, a PICC line was needed. Using conscious sedation, there were two unsuccessful attempts to insert the PICC. While under general anesthesia, a PICC was finally inserted, and Connell had temporary IV access. Eventually, on November 29, 2000, Connell returned to the OR, and a new port was surgically placed.

Connell started chemotherapy on October 27, 2000. It was never easy for him. He bravely endured aggressive chemotherapy, every 21 days, for five cycles. After each cycle, he was readmitted with a fever and neutropenia. He received his doses of antibiotics, and within a few days, sometimes a little longer, he rebounded, and we were discharged. Before we could unpack, it was time to go back for the next cycle. Although many would disagree, I never really minded our hectic schedule; it was something we had to do. It was Connell's life, and I would do whatever it took to get him well. I truly believed it was a temporary obstacle to hurdle. I always thought Connell would survive this horrible ordeal; we would put this chapter of our lives behind us and walk off into the future . . . together!

On January 5, 2001, Connell had his first MRI since beginning his chemo treatments. Despite the fact that my father-in-law passed away on January 4, 2001, I was elated. Connell's MRI showed a significant decrease in the size of the tumor - the chemo was working!

Unfortunately, things aren't always like they are in fairy tales. After Connell's fifth cycle of chemo, on February 21, 2001, he was readmitted with a fever and neutropenia - the usual. I figured a few days of antibiotics, and we'd be on our way. After all, Connell was now done the intensive induction part of his protocol. Facing him now were eight cycles of outpatient chemo. These cycles were to be spaced six or seven weeks apart, therefore, a little more gentle on his body. We were so excited and thought the worst was over. Adding to our excitement were the results of an MRI done on March 13, 2001. Again, there was evidence of improvement with the size and characteristics of Connell's tumor. The chemo was REALLY working.

However, on March 15, 2001, we were yanked back to reality. Connell was transferred to the PICU with a persistent fever and an oxygen requirement. Within an hour of his arrival to the PICU, Connell was placed on a ventilator . . . never to come off it. He was talking to us right up to the moment that they sedated him, in order to intubate. How could that be? Never did I think, at that point, that I would never hear Connell say "mommy" again. What I wouldn't do to have that moment back. I would have delayed the intubation since it was done non-emergently, under controlled circumstances, just to hear Connell's sweet, innocent voice, one more time.

Despite increased ventilator settings, different modes of ventilation, multiple medications and other interventions, too many to recall, Connell became an angel of God, on March 20, 2001. It was later revealed that viruses were the culprits -- a complication of the chemotherapy. The very thing that was to cure him, actually took him from us. With his daddy stroking his head, and both of us talking to him, Connell passed away in my arms. Present with us was our very loving and devoted family. I know Connell felt the love that surrounded him as he took his wings and flew!

Although Connell's life was short, too short, it was truly meaningful. It amazes me that such a little guy could profoundly effect the lives of so many people. He had the ability to light up a room with his brilliant smile and warm hearts with his lovable personality. There is no word powerful enough to describe the aching, the emptiness, the loneliness and the sadness that my heart feels. Connell is always on my mind and forever in my heart!

Connell, we love you more than the oceans are deep, and we miss you more than there are grains of sand; like the shells on the beach, you are special, unique and one-of-a-kind! Until we meet again . . . . .

LOVE, HUGS AND KISSES,
MOMMY, DADDY, JOSEPH, EIREANN and BRENDAN
XO XO XO XO XO

My Message to You

For any of you who have a child, or know of a child, having problems with the movement or control of their eye(s), please request . . . demand that a neurological workup be done. Statistically speaking, most eye problems are not caused by brain tumors, and therefore the possibility of such is often overlooked. However, when you are on the losing end of that statistic, it doesn't matter that it only involves a small percentage - you are that small percentage! I believe Connell had his tumor, as an infant, when we first noticed his eye problems. When Connell's tumor was discovered, it was found in the part of the brain responsible for eye movement and control. All of his symptoms were eye related; he never had speech or motor deficits. A doctor once said that his tumor was probably benign, at first, then became malignant, over time. An MRI, at four months of age, could have changed the course of Connell's treatment, and, potentially, saved his life. A benign tumor may have been found, requiring less aggressive chemo; a smaller tumor may have been found and possibility completely removed. I will never know what COULD have been, but I certainly wish I was given the chance to find out. If anyone, even one child, benefits from this advice, then I will have succeeded. I would hate for another child and family to experience what Connell, my family and I have been through.

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