Carter

“Survivor Carter”

In 2009, our oldest son was 4, our middle son (Carter) was 22 months, and I was four months pregnant with our third.  Carter was a very easy-going baby, and so at the beginning of April 2009, when he began acting a little irritable and rubbing his head…we knew something must be wrong. I took him to the pediatrician assuming it was an ear infection, and it was a double ear infection. Carter began antibiotics, and we went out of town to visit my in-laws for Easter. On the trip, Carter wasn’t the great eater that he usually was, and he was still rubbing his head. When we got home, I took him back to the pediatrician.  He examined Carter and said his ear infections were gone, and we should stop the antibiotic, in case he was having an allergic reaction.

The next day, my mom was over visiting and we were talking about what was bothering sweet, good-natured Carter. My mom was trying to sooth him by rubbing his belly, and then asked me to come feel something strange. We had his older brother lay down on the ground next to Carter, and we felt along their rib cages.  There was clearly a large lump in Carter’s abdomen, which was not in his brothers. It was 5:05pm and my pediatrician’s office had just closed, but they connected me with the children’s hospital hotline. The nurse said if Carter was able to make it through the night, that I should go see his doctor in the morning.  Meanwhile, I started Googling possibilities, and was scared by some of the things I had read…if I only knew what lay ahead.

Within minutes of arriving at our pediatrician’s office the next morning, he told us we needed to go to another office to have an ultrasound immediately. The ultrasound tech was in the back room for a long time after she had done the ultrasound on Carter. Then, she came out and said our pediatrician would like for us to go back to his office. This was not a good sign. Once we arrived there, the doctor told us there was a mass (or masses) on Carter’s liver and we needed to get a CT scan and blood work right away. He also told us he was in contact with the oncology team at the children’s hospital. WHAT??!! Oncology team??!! We were hopeful he was being extra cautious.  Carter endured a CT scan and blood work that afternoon. Matt and I were back on the computer searching for possibilities, but dreading what we were now reading. At 8:30pm that night, Matt answered the call from our doctor letting us know that our seemingly healthy 22 month old son had cancer and that an oncologist from the children’s hospital would be calling us the next day to talk about coming in.

There is no way to explain what you go through when you hear that your child has a life-threatening illness, let alone CANCER. I remember, Matt and I holding each other and crying all night. I remember, doing these moaning cries into my pillow to muffle the noise. I remember, forgetting to breathe, and reminding myself that I was pregnant and I had to protect this baby as well. I remember everything very vividly from April 17, 2009 for the next several months through Carter’s treatment.

We were admitted to the hospital on Sunday, April 19th and everything was very planned out for us…and when you’re thrown into a new world, this is very comforting. The next day, Carter had a biopsy confirming it was cancer, a central line put in his chest to administer his medications, and his first dose of chemotherapy.  Carter was diagnosed with hepatoblastoma, which is a rare form of liver cancer in children.  here is 1 in 1.5 million chance of your child having this disease. The children’s hospital staff took over and guided us through the entire process, and helped Matt and I not dwell on “why” and “how”, but made us stay focused on the priority, which was to help Carter beat cancer.

We spent the majority of the time as inpatient for the next 8 months, and yes, had a baby along the way. We were regulars in the playroom on the oncology floor, when Carter wasn’t in isolation due to his counts being so low. Matt and I both remember so clearly on our first day in the playroom, we looked like deer in headlights. This other oncology mom walked up to us and asked if it was our first day there, and we said it was, and she just opened her arms for a hug. I immediately started hugging her and sobbing. It was there that we had the chance to meet other families going through what we were experiencing and that is just what we needed at that moment.

Carter endured 4 rounds of chemo, a liver transplant, and two more rounds of chemo. He had every possible rare side effect during his treatment, which caused us to interface with almost every subspecialty.  In addition, from the intense chemotherapy on his tiny body, our little warrior developed neuropathy, his eyes crossed which required surgery, a severe rash around his central line which lasted for months, three broken legs due to his brittle bones from chemo, a bowel obstruction, hearing loss, and more CT scans and MRIs under general anesthesia than we care to count.  Although…words cannot describe what it is like to see the oncology unit full of these incredibly resilient kids going through more than most adults can tolerate, and they’d bounce back with smiles on their faces.  It was both, the most heart-breaking and inspirational thing to have ever witness, especially seeing your own child enduring it all and fighting for his life.

On October 23rd of this year, we will be celebrating 5 years since the end of treatment and Carter will be considered CURED FROM CANCER!  He is the most amazing 7 year old with an infectious personality and a zest for life like no other.  He never forgets a name or face and can talk your ear off. I think this journey is to credit his politician-in-the-making personality, when he cruised the halls attached to his IV pole waving and high-fiving all the staff. We are so thankful every day and the world is definitely a brighter place with him in it!