One cold Sunday afternoon in February 2009, Jackson had just gotten up from his afternoon nap and I was changing his diaper. I noticed as I changed him from his Sunday clothes into playclothes that his side looked a little funny, like a rib was out of place or something. I remember straightening his wriggling body on the changing table and feeling around for the bottom of both of his ribs. Nope, I felt them both…but this was under it. My Mom antenna went up and I realized something was just off. I knew something was wrong.
With the local adult ER packed, Ev and I decided to head to the local children’s hospital emergency room on the suggestion of the on-call pediatrician. On the ride over, Ev was calm, and I felt strange and frightened.
When we got back into a room at the CHKD ER, the resident came over to look at the “mysterious lump that Mom had found.” I could tell the resident was just as puzzled as we were. A happy, healthy toddler with no eating or bathroom problems. In came the attending physician who ordered a CT scan.
It was in the CT scan room that life changed. The doctor stood with the technicians and read the scan as it came in; we didn’t even leave the room before she came in to tell us that Jackson had a large growth in his stomach. When labwork came back shortly thereafter, they started talking cancer. We were admitted to the oncology floor and I became the mother of a 13-month-old with Stage III, n-myc amplified Neuroblastoma with a 30-40% chance of survival.
Jackson had a total of 15 months of treatment – including six rounds of chemotherapy, a major abdominal surgery, stem cell transplant, 12 rounds of radiation and 5 rounds of immunotherapy. The fact that Jackson is six and a half years old now and a rising first grader is nothing short of a miracle.
To have another child after such a traumatic experience was a big decision. Jackson’s oncologist told us we’d be just fine. My OB/GYN said we’d be just fine. We decided it was time after Jackson had hit one year post-treatment.
I found out I was pregnant in June and my due date was February 23. I was a little nervous to be sharing the due date month with Jackson’s diagnosis month, but I tried to shake it. Once we hit October, I began to show signs of high blood pressure. Pretty soon I started spilling protein into my urine. On Halloween, I could barely walk three houses trick or treating with Jackson. I was so swollen and achy. I knew something was wrong. On November 1, I was admitted to Norfolk General with Severe Preeclampsia and partial HELLP syndrome. To say we were crushed is an understatement.
While laying on my left side on anti-seizure medication, we spoke with the CHKD neonatologist about the chances of having a baby at 24 weeks. I explained about Jackson and just cried. I told him how I just couldn’t have another sick child, I just couldn’t do it. He kindly explained that we could, and that the odds were 50/50 she could survive.
I made it almost a week in the hospital before my preeclampsia took a turn for the worse. During my daily non-stress test, we learned the baby was not doing as well. The technician looked me straight in the face and told me the baby was “circling the bowl.” When a severe headache came on shortly later and my vision went blurry, we knew it was time to deliver before I suffered a seizure or stroke. A little after 9:30 p.m. Abby came quietly into the world at 1 lb 3 oz and 12 inches long. It was scary and we were both very sick.
The next day, Everett and I were called to come over to CHKD to see Abby. Her heart and lungs were not doing well, and she had already coded once. The nurses ran in and unhooked me from all my IVs and Ev, my sister and some nurses wheeled me over to the NICU. They wanted us to come over and see her before we lost her. But amazingly, she stabilized. The next day we learned she had a grade 4 brain bleed on the right side…brain damage. We began to pray that God would heal her or take her back home. He let us keep her. Two and a half years later, she is walking, talking, happy and is a pure joy.
I don’t know why both of our children have gone through very tough health scares. By statistics, we really shouldn’t have either child.
When I meet new people who don’t know our stories, I can see how overwhelming that information can be. I usually only tell about Jackson’s cancer or Abby’s prematurity. One story at a time is believable. Both stories, and I get the “boy, you have some bad luck” comments. I just don’t see it that way…I feel like we’re VERY lucky.
I want to use this blog as an outlet for telling my stories about my kids and what we’ve been through, sharing tips we’ve learned and being a resource to parents going through serious illnesses/diagnoses for their kids.