Sunday, November 15, 2015

Back to the proton center, 2.5 years later

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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!

Monday, August 24, 2015

a good long while.

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Well, we haven't updated this site since Dec 2014. That's a long while. But a good while. With the sigh-of-relief news of NED for her MRIs, we've focused not so much on cancer, but on living life, enjoying family, making the most of the days. That's why it's been good.

Sophie has now started 2nd grade, and we are so grateful that she is doing well overall. Hard to believe that it's been 2.5 years since we started this cancer journey in Dec 2012. She's come so far, and we are so very proud of her. Life has not been the same, but I'd like to think that we've learned & grown much as a family, as believers, as parents, as people. Thank you all for your kindness, generosity, encouragement, & prayers. We could not/cannot go through this without you all.

Our next big treatment decisions are around starting growth hormone. Many kids who have gone through standard medulloblastoma treatment protocol of radiation & chemo will typically have their physical growth stunted, primarily b/c of the high radiation exposure to the spine. We have consulted with the endocrinologist & Soph's definitely seems to have slowed down with her height. While she probably never would have been the tallest in her class, she hovered around the 50th percentile pre-cancer. She's now closer to the 25th percentile & will continue to slide off the scale, unless we intervene with GH. It's not without its risks and controversy though. There have been anecdotal stories of cancer relapse after starting GH. While there isn't solid data, it's still a frightening thought, if there is any correlation between GH & growing cancer cells. It's also a fairly significant lifestyle adjustment. It's a daily injection via needle for years, until she hit puberty. While one could argue that you get used to it (I suppose we got used to the TPN, port, weekly needle changes, etc, since Soph had those for a year+), it's still not pleasant to imagine daily injections for years.

I am a bit more leaning towards GH, mostly b/c of some confidence from the recent clear MRIs. If we can help her in any way, even if GH is mostly a social/cultural benefit, why not? Jeannie is more nervous about it's correlation with relapse. It wouldn't take much though, to really shake me up. We've read so many experiences of other medullo kids that have relapsed. It's scary, and another sobering reminder that cancer has no cure. We're constantly nervous about receiving tough news after the MRIs.

Please pray that we make good decisions about these next steps in Sophie's treatment, and that we continue to trust God, even if it may not be what we want to hear.

Ears pierced for her 7th birthday!
Met cousin Jane in July! 
Started horseback riding to help with balance, gait.
Loved our week at Lighthouse Family Retreat, with our partner family friends, Hudson & Kylor.
Neuro-psych testing with Dr. Powell in Aug. Positive results!
Little sis, Selah, has joined Soph at Madison!