Sunday, November 15, 2015

Back to the proton center, 2.5 years later

**Please like our facebook page, Feisty Fighter, for more frequent updates & pics, if you'd like to follow along our journey.

Last weekend we went to an open house at the Chicago Proton Center celebrating their 5th anniversary of treating adults and children with cancer. At the time of Soph's treatment in 2013, it was one of 13 proton therapy centers in the US, now there are 18. Historically, it's been a very expensive treatment, due to the technology of protons reducing collateral damage to non-cancer areas of the body.

When I first heard about the event, I immediately RSVP-ed and put it on our family calendar. We had not been back since that last treatment on Feb 13, 2013, & my main motivation was to go and see Sophie's nurse, Ms. Marianne, who gently & lovingly took care of Soph (and us) during those 6 weeks of radiation treatment in Jan-Feb 2013. The shock of our daughter having brain cancer was still raw & unbelievable at that time, & Ms. Marianne helped us get through that seemingly never-ending 30 days of anesthesia & radiation.

Jeannie didn't seem quite so excited to in the days leading up to Saturday, nor when we got there. I was more motivated to see our nurse, to have her see how far Sophie's come in the almost 3 years since she saw us last. When we got there, we waited for our tour in the lobby of that nice, pristine building with unlimited drinks, snacks with smiling marketing people taking our pictures. I flashed back to those cold days working remotely in that same lobby waiting for our daughter to wake up from anesthesia after receiving dangerous levels of radiation.

I remember one morning coming out with Soph to head home, and we stopped by a treasure chest to pick out a toy. There was a group of sharply-dressed people presumably taking a tour, and one of the ladies smiled and asked me, "so is the proton therapy working?" I was taken aback, b/c I was still trying to gather myself after another tough session where Soph had a hard time waking up from anesthesia, her hair was starting to fall out, and she wasn't eating due to the radiation & chemo. I looked at the lady, and really wanted to tell her, "well, if you call this double-edged sword that may cause secondary cancers, growth inhibition, & other unpredictable future side effects 'working', then yes, it's working." But I bit my tongue, smiled weakly back, & mumbled something like yes, thank you.

Those were the mixed sort of emotions Jeannie had felt about the proton center when were there, and what I realized as well when we got there. Unfortunately we didn't get to see Ms. Marianne, and the rest of the tour was not what I expected, nor what I cared about. We left before the tour finished. One of the "celebrating" points of the 5th anniversary was that they had treated over 2100 patients, including hundreds of children. I am, admittedly, a glass half-full type of guy, but that's not a stat that I'd like to hear. (They probably won't ask us to be in a promotional video any time soon, but oh well.)

Don't get me wrong, I'm grateful for the treatment & technology of proton therapy. Who knows where we'd be if we had to opt for photon radiation instead of proton, and what sorts of late effects we would have to deal with, but gosh darn it, if I'm being honest, it really does suck & I hate radiation therapy. If anything, it only emphasizes the need for better treatments, instead of the poisons of radiation & chemotherapy.

The people that work there are still great, & I know they have the best intentions at heart. That's the most important part of all this & what I want to remember from the proton center. We really do wish we could have seen Ms. Marianne, & will return to see during regular hours. But I'm not quite sure I'll ever go back to celebrate or to take a tour to hear physicists talk excitedly about how these machines are technological marvels.

Enjoy some pictures below. They took us back to those scary days of 2013, reminding us how far God has brought us. He has blessed our family with no evidence of disease with Soph since then & 3 precious gifts to love.

With our nurse, Ms. Marianne, and the second to last day of treatment.
Sophie's hand-print on the last day of treatment, Feb 2013
Almost 3 years later, now a party of 5!
Love this super girl. Thank you all for continuing to love her too!

1 comment:

  1. Jason...we've never met, but I have been following Sophie's journey since being introduced to the Feisty Fighter FB page by your friend and my cousin, Joe Park.

    Thank you so very much for sharing your thoughts - lots of great insight in this post. And those darn pictures...they move me to tears every time I see them.

    You have a beautiful family.

    Cheers and many blessings,

    Jay Hwang