Written by Chris’ mom Amy:
Chris was born with hemihypertrophy. It is a condition in which one part of the body is larger than the other and is associated with an increased risk for certain cancers. In Chris case, his left leg is longer and bigger than his right leg. At 6 months of age he was sent to an orthopedist and geneticist. The orthopedist followed his leg length discrepancy and the geneticist evaluated him to rule out genetic syndromes and to screen him for Wilms Tumor. When we visited the orthopedist the first time at 6 months, we were sent for a screening ultrasound, this was the first time we heard of Wilms. I remember coming home and crying that day, knowing that my son was at risk for cancer. As time went on, Chris had AFP tumor markers drawn and screening abdominal and renal ultrasounds every 6 months. As he hit 7 years of age, we thought the risk for developing Wilms was behind us. His screenings were to end at age 8. So, at one of our last scans, I heard the words, “There is a growth”. I remember that day so vividly. I couldn’t believe what I was hearing! We were almost at the end of all of this. MY child couldn’t possibly have cancer…that happens to someone else, not us.
And then our world was changed forever. We entered the world of cancer….
What then followed was a whirlwind of emotions, tests, scans, and blood work. Meeting with oncologists and surgeons, going to the clinic, feeling scared, angry, depressed and sad. How did we get here???!!!!
After several scans and tests, there still wasn’t a clear diagnosis. His growth was outside the kidney, not inside as seen with typical Wilms. Also, Chris’s AFP level was extremely high, which is also not typical of Wilms. Our only option at this point was surgery to get a definitive diagnosis. His surgery was performed at Children’s National Medical Center on the first day of the start of his 2nd grade school year. The tumor was able to be removed, but took with it part of his kidney. Unfortunately, there was spillage of his tumor, which immediately moved him from a Stage II to a Stage III cancer. Two slow painful days of waiting revealed Extrarenal Wilms Tumor, a rare form of Wilms. He went back to surgery the next day for insertion of his port. Chemotherapy and radiation (because of spillage) were to begin the next week. But then Chris started having abdominal pain, vomiting bile, and abdominal swelling. He was rushed off to emergency surgery two days later for intestinal obstruction. So a 3-4 days stay at the hospital turned into a two week stay. Chris then had 7 days of radiation and 8 months of chemotherapy. Within that time frame, there were several ER visits and 2 hospital stays.
Of course our faith was shaken. How could it not be? I was so angry, sad, depressed, helpless and felt weak, when I knew I should be strong for my son. I felt like God had abandoned me. Why wasn’t he answering our prayers. How could he let this happen? I know I will never know the answer until He decides to reveal it to me. Through all of this, I have grown closer to God. I come to him in praise and thanks each and every day for what we do have, for being together in the present moment, for the nights I can still tuck my kids into bed and hug and kiss them. I never want to forget because it allows me thankful for today. I can’t forget because it has forever changed who we are. I look at my son today and see his strength and bravery and I feel truly blessed. Today I am happy to say that Chris is NED!!! We now live in 3 month increments…..one scan at a time!
Chris’ Crew on Facebook