I was 34 weeks pregnant with Zoey when I had not felt her move all night. I decided it's better to be safe than sorry, so I headed up to the hospital. I was right, she was in severe distress and I had an emergency C section. Zoey Rae was born on April 8, 2009. Zoey was taken away to NICU immediately and put on a ventilator. Other than her lungs not being mature she seemed to be doing well for being 6 weeks premature. But she started to go downhill fairly quickly. Dr thought she was losing blood somewhere and wanted to do a CT of her head. It came back normal but he still had a feeling something was not right. So thankfully for his ill feeling he decided to do an ultrasound of her abdomen. And there it was, a golf ball sized "mass" on her Left Kidney. He immediately decided to life flight her to Primary children’s medical center. She was not even 5 hours old and she was leaving me. I had to be put under for the C section so I had not even held her or really laid eyes on her yet. They wheeled me into the NICU and I got to watch them load her onto the helicopter. Watching that helicopter fly away with my daughter that I had not even held was one of the worst moments of my life.
I was kept in Hospital for 5 days due to complications of my own. So it was Easter Sunday 2009 when I first got to touch and see my daughter. She was the most beautiful little girl I had ever laid eyes on. She was still on a ventilator and Swollen up like a balloon. She had needles and tubes all over her, PIC lines, Arterial lines, IV’s in each hand and one in her head. I could not believe that was my baby. And even though I had been contacted on the phone with Dr’s and nurses for the past 5 days I still really had no clue what was wrong with my baby.
The Dr’s kept calling it a tumor but I really did not grasp what that meant until the surgeon came in to talk to me about Surgery. And he was the first one to use the word "cancer" with me. It hit me like a ton of bricks. How could a newborn baby be born with cancer? I had never heard of such a thing. I had so many emotions running through my head. And I kept thinking what did I do wrong, what did I eat, what was I exposed too. So easy to blame myself for this.
Zoey was a week old when I first heard the term Neuroblastoma. I had a 6 week premature baby with Neuroblastoma, how on earth did that happen. She was finally off the ventilator at this time and was breathing on her own. Dr’s wanted to do surgery that week to ensure that the cancer did not spread. But when they did a new ultrasound they were happy to see that the tumor had not grown at all since her birth a week earlier. At this point they decided to wait and let her gain some weight and strength.
Zoey had been living in the NICU for 3 weeks when the Dr’s, nurse practitioners and nutritionist’s met to talk about her surgery. They wanted to wait and see what the tumor was going to do but because it had grown on her adrenal gland it was causing severe blood pressure problems and they were worried about long term heart damage. Also her thyroid was not looking so good. So they decided that they would do surgery on her 4 week birthday. At this point we were not sure what would happen after surgery. All depended on what it looked like once they got in there and what the lab had to say about the tumor.
May 6th 2009, the day of surgery. I remember that day like it was yesterday, my sister had flown in from Maine to be by my side (did I mention I had become single while pregnant). So it was so nice to have her there with me. It was the longest 5 hours of my life. Sitting in the waiting room while my 4lb 11oz baby was being cut open. The surgery actually went really well. They were able to get the entire tumor out. Bad news was the adrenal gland had to come out, and the main blood supply to Kidney was wrapped around the tumor. They tried to save Kidney, but over the next year Kidney died and shrunk down to about pea size.
We got great news about 5 days after surgery, they classified her Neuroblastoma at stage 1…the best it could be. The tumor was solid on outside although it was not on the inside they were pretty sure it had not spread anywhere. At this point and time Zoey would not need any other treatment from Oncology. They were feeling really great about her outcome.
Zoey was discharged from the NICU at 6 weeks old on May 20th. We found that really funny, she was due May 19th and my son always says is she would have come on her due date she would not have gone home until the 20th anyway! He was super excited about her coming home; it was RSV season so he was not allowed in the NICU. He had not met his sister, only seen pictures of her. It was the best homecoming ever.
Zoey
Zoey is turning 3 in April and we are so thankful for the NICU doctor that did not give up. His persistence is why her journey was so short and that no other treatment had been needed. Finding her cancer at stage 1 was such a blessing, Zoey is called our miracle baby!
