August 21, 2008

What it's like - part one

I've been thinking about this post for quite awhile. For the most part I created this blog to keep friends and family updated on Madeleine's progress. I initially decided to keep the emotional side of dealing with a child with cancer out of this. Today I will break that vow because this post has been in my mind for quite some time. And also, because maybe there is someone out there that will read this and be able to find some sort of comfort in the similarity of their own feelings and reactions in dealing with their child's cancer journey. I know that all experiences are different, but in talking to some of the parents of children with cancer, there are also a lot of similarities in coping with this terrible disease.

The days leading up to diagnosis:

Madeleine was diagnosed with Neuroblastoma within three days of initially presenting her symptoms. We are very lucky in this aspect because many times it takes months to diagnose Neuroblastoma as many kids present with flu-like symptoms - not something for which one would get an MRI.

We had noticed progressive weakness in her left leg for some time. I kept second guessing myself because suddenly she would move the leg and I would think that everything was okay again. Not a day passes that I don't wish I had taken action sooner than I did. I don't know if it would have made a difference to have caught it a week or even two earlier, but that thought remains.

It was a Tuesday morning that I finally called the pediatrician. The nurse I spoke with was concerned and she had me come in to see the doctor that very day. Madeleine and I met with the pediatrician (not our usual ped.) and a medical student. They asked me a bunch of questions and did all kinds of tests. They couldn't get a reflex on either leg and seemed to be becoming increasingly more concerned. The doctor and student stopped talking to me and started only speaking with each other in medical jargon. They were both very, very serious and I started to get a little panicky. I was sure that I was going to bring her in and that they would find nothing wrong whatsoever and send us home. The doctor wanted to get some labs and x-rays to rule out any infection or fractures. She was pretty sure that this was not the case due to her preliminary tests. She also brought up having an immedietely shocking word.

After getting the x-rays and blood work done we headed back to the pediatrician's. She informed us that everything came back fine and that we would be called to schedule an MRI. She also said that she had never seen anything like this before.

I don't remember much of what we talked about for the next two days. We couldn't get an MRI until Friday of that week. Our regular pediatrician, who had been briefed on all of this, called us multiple times throughout that week.

I first heard the word "cancer" the Wednesday night before the MRI. Ryan's father, a neurologist, had been researching Madeleine's symptoms and consulting with our pediatrician and a pediatric neurologist. Ryan told me that they all thought that it could be neuroblastoma. I often wonder what it would be like to go back to a time when I didn't know what that word meant. Ryan gently explained that it was a cancerous tumor and that is the first of many times that I broke down. I quickly decided that it wasn't that. There's no way that my baby has cancer. Weirdly that became my mantra for the next couple of days. I never said it outloud, but hundreds of times throughout the day and night that was my constant refrain: My baby doesn't have cancer. I kept insisting (again, to myself) that it was just a reaction to her immunizations, that it would go away on its own. I know now of course that I was in shock and denial.

to be continued...


Hi, my name is Sarah. said...

I have goosebumps. When I heard out about Madeleine's diagnosis I kept saying to myself "my friend's baby can't have cancer". She will beat this, I know it!

Ericka said...

you're very brave to share your story. I'm proud of you.

jocelyn said...

You are brave. But try not to make me cry at work, okay?