two years OT!



No big deal.

Ok, it is a big deal and it isn’t a big deal.

It’s not a big deal to Diego, but it’s a big deal to the rest of us. And I’m totally okay with that.
Two years ago Diego had his last chemo treatment. It was hardly the end— with a second bowel obstruction (and 4th surgery), sepsis, discovery of 2 additional tumors, a fifth surgery and lingering questions over relapse. Still, it’s still a pretty awesome milestone, don’t you think? Somewhere I read that his chance of relapse goes down after year two, but I’m not really looking at the odds any more. I’ve got one kid who is doing pretty great, so that’s all I care about.

I mentioned this anniversary to Diego yesterday and I think he just said. “Oh.” I asked him if he remembered being on chemo and I think he said something like “Not really.” Which, quite honestly, is totally awesome. I am totally okay with him forgetting the nightmare. I was going to do some sort of celebration but I realized that it would only be for Erich and I. This little boy doesn’t need to be defined by that disease any more. I remember while he was on treatment running into this mother with her teenage son who was a cancer survivor and she kept blathering on about how they were told he was going to die so many times and how hard his life was and, besides being mortified she was saying this in front of my kid, I felt like this teen had a terrible burden put on him. I mean, it sounds like he lived his whole life with this sort of story hovering over him like a dark cloud.

I guess I want Diego to have a normal childhood. Let’s hold on to his innocence as long as we can. In the past 2 years both grandmothers dealt with cancer and were treated surgically, and one friend has suffered a relapse, but everybody is now doing just fine. He doesn’t need to know that cancer can kill. Why should he? He is five.

As for me, I’ll admit, I think I’m still trying to process it all.

It’s been a busy couple of years with other more normal challenges. It probably still took our family a year to recover emotionally, and just come to terms with the uncertainty of it all. Each person deals with this sort of situation differently, and I feel that my way has always been to philosophize and to essentially to live with- and be prepared for- everything other than Plan A. (That’s where we live happily ever after.)

Yesterday I watched a preview for a film about pediatric cancer patients called The Truth 365  and probably cried for about 20 minutes afterwards. It’s so unfair what these children and their families go through. I honestly still can’t cope when I hear of a child dying of cancer, it still feels like it could be Diego. I haven’t washed my hands of this experience, nor will I ever allow myself to. I want to help, to speak out, but I haven’t figured out quite how to find my voice. I have a lot of emotion on this topic—especially when it comes to the flaws of US medical system, what losing Obamacare could mean to Diego and the general lack of funding and interest in pediatric cancer research. I guess I fear opening up about this would be akin do a dam bursting.

The last time I opened up with my support for Obamacare on Facebook it became a polarized comment war of epic proportions, but as the election draws near I feel it’s important to put my views out there again. With all the soundbites and internet pseudo-activism and screaming about death panels, please consider that without the protections of Obamacare there are real children who could max out their lifetime insurance caps before they hit puberty, and many of these kids will be saddled with a pre-existing condition and thus uninsurable their entire lives. When you open up a bill for half a million dollars that your insurance company foots for you, you really start to understand the value of being able of being insured. I’ve read somewhere that medical costs are the leading cause of bankruptcy in this country, and I certainly believe it. So sorry to get political, but for me this election is personal, and I worry about Diego’s future under a new president. I think it’s worth putting a face to the people where these laws make a big difference. Our out of pocket medical costs have quadrupled since Diego was diagnosed, but I will take that any day over him being denied insurance altogether.

So there it is, a little bit of trickling over the dam. I will now get off my soapbox. I feel this blog has been a safe place to share my fears and concerns, so please keep the political debates to social media or where ever else people are spouting off these days.

Please do, however, join me in celebrating Diego’s NBD Second Chemoversary!

3 thoughts on “two years OT!

  1. Janet Brugos

    It is a wonderful anniversary to celebrate. When I see Diego today, I think of the kid he is now. For the first year, every time I saw or thought about Diego, I held my breath and tried to protect him from everything. Thank you Maja, for deeply personal and thoughtful comments.


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