11 years

This week marks the 11th year my son, Ben, has been fighting Neuroblastoma.

He was initially diagnosed with Stage 4 Neuroblastoma on Feb. 20th of 2004. (At least I think it was the 20th. Like any memory, there are certain points that remain clear in my mind and others that I’ve forgotten.) His diagnosis came after months of being ‘sick’ with what we were told were normal childhood illnesses. Sadly, we had no idea that these illnesses added up to our son being sick with cancer. To this day I still get tense when I think about how we could have caught this earlier had we known what they symptoms really meant.

11 years is a long time, especially when you’re a kid who has been fighting for so long. Ben is special. I’ll just put that out there… anyone who has fought for 11 years and complained very little about the invasive and often-times painful treatments is very special in my eyes. His sister is special, too. Just because she’s not being treated doesn’t mean that she hasn’t been affected. I love them both more than anything else in this world. (Note, I wrote ‘this world’.)

Ben was given the all clear last week meaning he is once again NED (No Evidence of Disease). How I wish this were the end of treatment for him. How I wish he could never have to go back to the hospital for scans or have to go back to New York for ANY follow-up treatment. But, as my grandmother used to say, “If wishes were horses, beggars would ride.” (Let me know if you understand that, I still don’t think I’m clear on it…)

Treatment will continue for the foreseeable future. Dr. K in New York wants Ben to do 2-5 Hu3F8 treatments. Ugh. The non-humanized version of 3f8 was pure hell on Ben. (Ask me sometimes how many times he asked God ‘why?’ or said ‘Kill me!’.) Supposedly the humanized version is ‘less’ painful but painful none-the-less. For Ben’s sake we’ll all put on the same brave face and dive into this treatment like with did with every other one.

I’m really not trying to be a killjoy. Really. It’s just that the reality of my son’s existence is that he will continue to be treated for cancer for the rest of his life. He is chronic and until he passes, which I pray will be when he’s in his late 90’s, this will be the case.

Please continue to pray for Ben and all the other cancer kids out there fighting this nasty disease.

Blessings,
Matt

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