Posted: October 30, 2014
2 Years Old at Diagnosis
Where do I start…My son Alex was a much anticipated child. I had had two miscarriages and over five years of infertility. We started the adoption process and shortly thereafter, I found out that I was pregnant. My husband Craig and I were so happy that we were finally going to be parents.
I loved being a mom. I would take Alex to the grocery store, run errands, play outside with him blowing bubbles and we would go to Kindermusik every Monday morning. During the summer of 2004 Alex started experiencing episodes where he couldn’t breathe while he was eating, and then he would vomit. I thought maybe he had allergies. He then started to run low-grade temperatures, but they were sporadic. There was no rhyme, nor reason for his symptoms. For three months I took him to his pediatrician making her aware of all of his symptoms.
As the months went on into the fall, Alex started sleeping more and eating less. Again, I took him to the doctor. She said he had a stomach virus, but failed to do an abdominal exam. The only position that Alex was comfortable in was me sitting and rocking him. I felt like I was trying to convince everyone around me that he was sick. One evening I was so frustrated that I called his pediatrician after hours and she proceeded to tell me that I was an overprotective, impatient, first-time mom. I knew I wasn’t crazy when my mother-in-law and my sister noticed a difference in Alex.
On December 6, 2004, I couldn’t take it anymore. We were on our way to Kindermusik and Alex was in the back seat crying that the seatbelt was hurting him. I called the doctor from the car. Her office told me that he couldn’t be seen that day. I told them I was bringing him in, period. When the doctor entered the room, she asked what brought us in. I lifted Alex’s shirt and showed her his distended belly and she immediately did an abdominal exam. She then told us I needed to call my husband and go immediately to Rainbow Babies and Children’s Hospital in Cleveland.
Six and a half hours after we entered the emergency room, our nightmare began. An ER doctor took us into a dimly lit room and showed us our son’s CT scan. He said your son has a mass and it is cancer – he needs to be admitted immediately.
For the next four days every time a doctor entered the room he/she had worse news for us. Alex was diagnosed with Stage 4 neuroblastoma. Alex had a 10 cm tumor wrapped around his vena cava. It had grown tentacles and blood vessels, he was bleeding into it. He had no bone marrow detected. He had holes all through his bones. He had a 10% chance of survival. Dr. Villella told us there was hope, but that Alex must start aggressive treatment. From there, Alex endured 6 rounds of high-dose chemotherapy, 7 1/2 hours of surgery, a bone marrow transplant and 12 rounds of radiation. Not to mention a couple of hundred blood transfusions, septic shock–twice, two broviac placements, a mediport placement and dental surgery. Alex also has profound high-frequency hearing loss, so he wears hearing aids. This past May we had a bit of a scare as the docs found 13 spots on his liver. They were noguls caused by his liver trying to regenerate itself. He also has too much iron in his liver because of the blood transfusions, so he does phlebotomy treatments every four weeks.
Alex is almost 8 years out from diagnoses. We get told all of the time what a miracle he is, and we don’t deny it!! We are so thankful for research, places like CureSearch, and for the grace of God that saved our son’s life.
I cannot tell you how bothered I am every time I hear that pediatric cancer research is in jeopardy, and I don’t understand why there is so little funding for pediatric cancer research. What would we have done if there was no funding for neuroblastoma research?…my son would have most certainly died.
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