Monday, December 1, 2014

2-year cancer-versary

Here's a side-by-side look at Soph's school pictures from kindergarten last year, and 1st grade this year. Look how much she's grown! Gained so much weight, more hair, but that same light-up-the-room smile! Love this special girl so much.
Today, Dec 1, 2014 marked the 2-year anniversary of our finding out about the malignant medulloblastoma tumor in Sophie's brain, or our "cancer-versary."

Events & snapshots of that Saturday, Dec 1, 2012 are still crystal clear in my mind.
  • Chick-fil-a for breakfast. 
  • Putting up Christmas lights in the unseasonably mild weather
  • Jeannie's plans to go out with a few girlfriends for dinner
  • Me calling Jeannie to come back early b/c something was not right with Soph
  • Sitting in the ER at CDH waiting for the the dr to tell us to go home
  • That look on the nurse's face when she told us there was a 5cm mass in Soph's brain
  • Me driving home, calling my mother-in-law to come quickly to stay with Seah
  • that long drive downtown at midnight alone, in tears, slapping myself, hoping to wake myself up from this nightmare
  • Staying up all night at Lurie while they explained the gravity of her condition, while we were in a daze
  • the 14+ hr surgery the next day to remove the tumor, while we waited in that 5th floor waiting room with friends/family shuttling in/out (Bears lost to the Seahawks (Russell Wilson's rookie year, random, I know, but those are the snapshots that stick)
It's hard to believe that we've been living in Cancerville for 2 years now. Our lives has been forever changed. Though we've been comparatively "normal" for the past 6 months, those tri-monthly MRIs, fatigue issues, clinic visits, etc have a way of jolting us back to our fears, uncertainty, & worries. It's something that God uses to remind us that we do not have control of our lives, no matter how hard we try. That dependency on Him is a lesson we are learning every single day.

To all of you who have journeyed with us the past 2 years, we thank you. From those crazy, hectic first month at the hospital, to the meals that were dropped off when Josiah was born, to all the prayers, donations, gifts, toys, we give thanks to you. PD preached a message a few weeks ago about the difference between being thankful and giving thanks, about how giving thanks requires a recipient (full disclosure: I didn't listen to the whole message, b/c I was wrangling Josiah half the time, but the two trains of thankfulness thought has stuck with me for the past 2 weeks). We are very thankful for all of you, and we also give thanks to the One who is in control of our lives. I don't think neither being thankful nor giving thanks is better than the other, but it just gives different perspective to the ideas that come up around Thanksgiving & the holidays. It's something that I'll keep pondering this next month.

Soph update:
  • Soph has been well, maintaining weight, and with an increasing appetite. She's up to 45.8 lbs, up 5 lbs since the beginning of the year. (remember she weighed 40 lbs at the time of diagnosis 2 yrs ago)
  • Hospital visits are mostly every 3 months now, with the MRI one week, then a clinic visit the week following, typically. Endocrinology, ENT, audiology, opthalmology, dermatology are all sprinkled in periodically.
  • MRI upcoming on Dec 12, praying, hoping, wishing for a No Evidence of Disease result.
  • She will start endocrinology treatment early next year. This will most likely entail daily growth hormone injections until she's 14, possible thyroid medication for the future as well.
  • She is still going to Marianjoy weekly for physical therapy. She has gained strength & endurance, but still has a bit of a gait. Because her challenges are related to brain injury, the rehab is a bit more difficult to project (different than an orthopedic injury)
  • Her hair is coming back nicely. It's a bit messy, I always joke that it looks like a bird's nest. Jeannie wants to cut it, but Soph doesn't. I think she just enjoys having her hair back. Her losing her hair is/was one of the least of our concerns during treatment, since we knew it was temporary, but it's symbolic of that slap-in-the-face from cancer that's the most noticeable sign of this terrible disease.
Thank you all for continuing to think of us, pray for us, & ask how she's doing.