Neuroblastoma

Wow, this is weird I never thought I would write about something like this. Where do I begin? Well my name is Sanil and my husband is Jason we have 2 beautiful children Evan who's 5 and Katelynn who's 16 months. We are the family type; pretty much our lives were what anyone would consider normal. We worked, paid bills, took vacations the usual. After Evan turned 2 we decided to try for the second. A few months later I was pregnant with Katelynn. She was born 7.12oz on November 21, 2008, the cutest thing. After having the pair, boy and girl; who could ask for more we felt like we were on top of the world; until that dreadful day.

Katelynn started to have these random things happen to her, it didn't seem like much at the time. She started to have low grade fevers but with no symptoms. Then she had what they thought was lymphadenitis but once again no symptoms. We took her for a regular check up at 9months and that’s when her pediatrician noticed the droop on her face. She suggested we see a Neurologist and an eye doctor. We made the appointments and like always they are weeks of waiting. Then she had really bad pink eye on both eyes and that’s when we decided to get her checked out ASAP. Once the Neurologist saw her he diagnosed her with Horner's Syndrome, which is a droop on one side of the face. She doesn’t sweat on the right side of her face she has one grey eye and I noticed that it’s taking a long time for her hair to grow back on that side as well. He ordered a CT-Scan and that’s when they found a mass on her carotid artery. That was so hard to deal with. I have never cried so much in my life. I was terrified. He told us to go to the hospital the next day (Schneider’s Children’s North Shore LIJ) and start testing to make sure it isn’t malignant. We went and they gave us 1,000 different possibilities. To put it all in a nut shell she had testing up the wazu. Finally she had a biopsy of the mass on her neck and that’s when we found out she had Intermediate Neuroblastoma stage 4 (November 17, 2009). A non-curable childhood cancer. My life ended. I couldn’t believe what I was hearing, my daughter has cancer.

They tested her bone marrow and that came back negative. They did an MRI and they found more tumors in her lymph nodes and they did a MIBG scan which showed that she had 2 more tumors in her abdomen and chest. She had to have port put in her chest and they removed 2 lymph nodes all in one surgery.

Chemo started immediately after. It was 4 session’s of chemo for 3 months. In the process she had blood transfusions and almost went into shock. Her counts would drop and she would get fevers. We were pretty much were living in the hospital.

After the 3 months they did testing and found No Evidence of Disease (NED), in other words cancer free.

The reason why I started this blog was to make people aware of the dreadful illness. I hope that I can get in contact with other families who are suffering and maybe we can get together and try to help find a cause and a cure. Approximately 700 children are diagnosed a year in the US alone. Although Katelynn is cancer free now, she still has a chance of relapsing. That’s my biggest fear. I don’t want her to go through what she’s gone through again. I don’t think any parent wants their children to go through this either. All I’m asking for are fact, stories, opinions and support. I hope I find that here.