Yesterday we had our appointment to meet with the surgeon or as they call it - a consult with the surgeons. This time we managed to leave fairly close to the time we wanted to leave. We arrived at the doctor's office around 12:45 pm so we had a 15 minute wait. The door to the doctor's office was closed and we figure that they were on lunch. By 1:05 pm the door was still closed and no one had arrived so we started to wonder if we were at the right location. I started to call around and got a hold of someone at Oncology. As they started to investigate what was going on - we saw two doctors coming down the hall - our surgeon had arrived.
The surgeon we met seemed nice and he apologized for arriving late and asked if we could wait a bit longer as he wanted to review the CT results. When he came back he gave us the news. The CT results confirmed that there was a mass in Jonathan. The mass was growing around his blood vessels instead of pushing it away. I'm not sure what's the value of that information - growing around vs pushing away - but I have to remember to ask someone.
They also saw another mass either by or on his liver. If the mass is in his liver then it means that the tumor or cancer has started to spread. They suspect that it is cancer called Neuroblastoma. They suspect that he is at stage 4. I have no idea what this all means ... I need to do more research. We started to ask more questions and I was doing fine until the end of our consult. I couldn't believe I cried in front of the doctor. I guess my mind 'jumped' to the future and what a stage 4 cancer could mean and I couldn't handle it. As I write that line - tears come to my eyes. I've decided I'll stop thinking about the future and take things day by day - but I do know that during my initial browsing around on the internet - there were other parents who have described their experience with their kids going through Neuroblastoma. It's now time for me to read their stories.
We eventually reach home around 5 pm and we were very tired. We wanted to reach as early as possible because we wanted to try and spend some time with Arielle and focus our energy with her. She was upset! She didn't want to talk to us! It took some time but she eventually mellowed out. I took her upstairs to play tea party - she absolutely loves that game.
After dinner we all went out to MacDonald's to play in their play room and eat some ice-cream. The kids had a great time. It was great to see all of us together like a 'normal' family. Friday promises to be another long day. I'm afraid that I wouldn't have the energy. I'm very tired. Now that I know where our path may lead us I have to start figuring out what I'm going to do at the office - with taking time off etc. I'm not too sure what my options are but I hope everything works out well.
As I end this entry - I have a favor to ask all of you reading my blog. Jonathan just loves to get (postal) mail. If you could send him a card - maybe with a sheet of stickers or other small token that kids will appreciate - that will just make his day. If you address the envelope in his name - that will make his day too - because he knows how to read his name. If you don't have my mailing address please send me an e-mail and I'll give it to you - or contact the person you gave you the link to this website - since I may not know all of you. For my immediate and close family - sending a card every two weeks or so would be one option for you to explore.
Thank you all for your prayers and I'm hoping that Jonathan has a speedy recovery.
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