Strenght

As Kate was going through chemo I feel that God gave me the strength to go through such a horrifying experience. The day Kate was diagnosed I couldn’t capture what the doctors where trying to tell me I would ask over and over, “ so u mean to tell me that my daughter has cancer and she needs chemo and surgery”. It was so difficult to accept. My heart became overwhelmed with worry and fear. As the chemo process began this feeling of security and strength fell over me. I did have my moments when those fears would come back but for the most part I was pretty strong. I feel that I had this sheet over me to protect me from seeing the truth about her illness in order to function, protect my family and cure her. I was so focused on getting her over this time and making sure that Evan my son was still the happy little boy he’s always been. Regrettably I didn’t do the extended amount of research I should’ve done but I do accept the fact that it is normal to act like that after a loved one has been diagnosed with an illness. I am so thankful that some of my family members and friends helped out as much as they can.

As soon as her chemo was over and she was free of cancer, that sheet was lifted off my head. Every day I think and replay in my mind the day Kate was diagnosed and when I look at her those worries and fears are stronger and more real than they have ever been. This is a process that I know I am going to go through the rest of my life. As horrible as it may seem to live that way, she’s alive and she’s cancer free. I don’t know what might happen in the future all I know is that I like all parents with ill children live day by day. I love my children and only want the best for them. My perspective in life changed and I’m grateful for that because it only made me appreciate life even more.

Neuroblastoma is the fourth most common malignancy of childhood, preceded by leukemias, CNS tumors, and lymphomas. Neuroblastoma is the most common intra-abdominal malignancy of infancy and the most common extracranial solid tumor of childhood as per WebMd. (emedicine.medscape.com/article/439263-overview). Although every 1 in 100,000 infant is diagnosed with Neuroblastoma, it should be more than enough reason to help want to find a cure.

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.