Most people have never heard of Neuroblastoma, neither had I.
It's a rare children’s cancer which affects only 1 in every 100,000 children.
My baby is that ONE in 100,000.
It was the last day of 2012. We were home watching TV waiting to celebrate the New Year. We thought we had a great 2012. We were very grateful that we had two healthy children – Braden, 2 and Makayla, 8 months.
Makayla had been active and loved cruising along the couch. When she fell from standing that night, we did not think much of it. I consoled her and she seemed to be fine. When she was cranky and refusing to sit up or stand during the next couple days, we figured it was because she was teething.
After a few days we started to get worried. We also realized she seemed to be in pain sitting up and would no longer stand. We thought, maybe she broke her ankle when she fell, or worse if she hit her head bad? We rushed her to the Emergency room. They did an X-ray on her hips and legs, there was no broken bone. They suggested doing a CT scan on her head to make sure there's no trauma. I googled and found links between CT scan and cancer. The chance was very small, but still, I didn't want to take any chances and she didn't have any symptoms of head trauma anyway. So we went and saw her pediatrician the next day. He said it's fine to observe for a few days – she might just be scared from the fall, or maybe she had an infection from the cold she had in the earlier week. Either way she'd probably be fine in a week or two.
Few more days passed by and we started to get more worried. She wasn't getting any better. We thought, maybe she bruised or fractured her tail bone or collar bone. We went back to the doctor on January 9th to get another set of X-Ray done. We thought chances are it's not going to show anything because bruises don't normally show on X-Rays. And worst case, we figured, we'd see a fractured or broken bone.
Around 5:30pm that evening, the phone rang. My husband Brian picked up the phone. There was a long silence. Then I saw him shaking and sobbing. I knew something was terribly wrong. I grabbed the phone and the doctor said “I'm very sorry, the lab technician just informed me that there's a mass in Makayla's chest.”
I could not believe what I just heard. I was shocked. I did not cry right away. I kept thinking it’s probably just a terrible mistake. The doctor said not to worry too much yet, it could just be a blood mass formed by a trauma. That was what I was hoping, even though deep down I knew she didn’t fall that hard.
We rushed to the hospital that night. I didn't know what to think in the car. I kept thinking, no this can't be happening to our baby. It's just a very bad dream. But the doctor in the Pediatric ICU prepared us for the worst case scenario. It could be cancer.
How could an 8 month old baby have cancer? I didn't even know babies can have cancers! We cried all night, and I was still holding out hope it's not cancer.
The following day was endless blood draw, X-rays, CT and MRI scans. The wait was torturing. Yet, the news was any parent's worst nightmare. It was confirmed cancer.
When we thought it could not get any worse, they told us the cancer was in her spinal canal, making it impossible to do surgery or radiation. Chemotherapy was the only option. It was the worst day in our lives, and the most terrifying words I've ever heard - “We'd need to do chemotherapy right away, or there's a chance of being paralyzed. And at this point we don't know if the damage done to her spinal cord can be reversed.”
That means, even if she's cured from the cancer, she might never be able to walk again.
I could not hold my tears, I was crying uncontrollably. I looked at her innocent face and I asked why? Why our baby? What have we done? Why is this happening to us? If I did anything wrong in my life, I should be the one who gets punished! Why? Why my baby?
The next few days felt like a dream, a nightmare that I kept hoping to be over with. But every time I opened my eyes I was still living in the nightmare.
For a long time, I was in disbelief, denial and tremendous grief.
Our 8-month-old baby girl was diagnosed with Stage 3 neuroblastoma. (Note on 3/27 - we were later told it's actually Stage 4 as the cancer is also present in her bone marrow). The prognosis is good and the doctor assured us that there's a high survival rate in babies under one year of age. It would have been a lot worse if she was diagnosed after 1 year. Currently it's classified as medium-risk unless an unfavorable gene is found in the tumor which could make it high risk and cut the survival rate in half. Also, because the tumor mass is pressing against her spinal cord she could become paralyzed from chest down. She might even lose bowel control.
She appeared to have normal bowel movements at that point. But the doctors were not sure. She had no movements in her legs. When they gave her shots in her legs to increase white blood cell count after chemo, she wasn't making a peep, as if she didn't feel it at all. She was not crying - but I was. Not only her tiny body's attacked by the cancer cells, she's lost feelings in her lower body.
It felt like somebody kept stabbing me in the chest. The pain was so real. All I could think of was my sweet little baby girl in a wheelchair for the rest of her life. Ever since I was pregnant with her, I dreamed about her running around and chasing her big brother. She'd be riding dirt bikes with him and their father. I bought tons of tutu dresses for her in sizes 18 months, 2T and 3T. These images in my head, of her running around in cute little dresses, that I once thought were so normal and natural, have now become an unreachable dream.
Anything and everything I saw caused indescribable pain - a little girl's picture on facebook, a tutu dress display at Target, I broke down every time I thought about how my baby girl might be paralyzed for life.
I knew I had to focus on the fact that she's alive and fighting. She underwent the first found of chemotherapy. It was very difficult for us to see her scream and cry every time a nurse or a doctor touched her. She looked terrified. She vomited a few times – a very common side effect of the chemotherapy. She was cranky and crying a lot. The doctor said it's expected because they also gave her steroid which could irritate her. They gave her morphine for the pain. I felt completely helpless watching my baby suffer. All I could do was to hold her hands and tell her repeatedly, “It's okay sweetheart. Mommy and Daddy are here with you. Don’t cry.” I was crying uncontrollably myself. I wish I could take all the pain away from her and suffer for her.
Luckily I wasn't fighting this alone. My husband has been very supportive. Although he was just as devastated as I was, he stayed strong for me. He said, "Let's focus on the fact that her prognosis is good. So what if we need to change her diapers for the next 30 years. That's what we'll do. God wants to make sure we have company when we get old." I burst into tears when I heard that, but it's so true. I should be grateful she's alive and that I can still hold her in my arms. Not all parents of children with cancer are this lucky.
Fast forward to today 12/23/13, we are at what we hope is the end of treatment. Makayla has regained most if not all feeling in her legs. She has completed 12 rounds of chemo, spent over 2 months of the last 11 months in the hospital. Numerous scans, tests, and more scans. She is recently off treatment and will get more scans early Jan. If the next set of scans show no new growth, then this will be a very big milestone. She will never be NED, because the tumor can never be removed. The hope is the tumor is no longer active and has matured into normal cells.