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!