Friday, January 3, 2014

a look back, & looking forward

It's near the end of that 2-wk stretch of Christmas and New Years, where work is (hopefully!) light, you can catch up on shows you've been meaning to watch, finish up cleaning up that office that you've put off, and generally enjoy time with the kids and extended family. It's been a very nice break for us, and real life starts back up again next week. I'm off to NC Mon-Thurs for work, and Jeannie's got the kids on her own for the week.

I can't help but to compare to this time last year. Maybe not all that different. Soph had more hair, no port, but was still figuring out how she was feeling. We had about 2 weeks of quiet at home after 18 nights at Lurie, and were gearing up for 31 grueling radiation treatments with anesthesia, knowing that this double-edged sword might kill some cancer cells now, but cause things like kidney cancer, lung cancer, cataracts, hearing issues. sigh. lots of sighs those days, and still today. Soph just had a full eye exam today at Wheaton Eye Clinic, and everything checks out fine, but I did have discussions with Dr. Ekdawi about the unknown effects of radiation down the road. Everything looks good today, but 10-15 years down the line, those 31 days of radiation could come back to to get us.

but we are in a better place. God has brought us through a year that I really didn't know how we would get through, with the unknowns, the news of a new baby, the new job, and all the possible complications of fever, low counts, coughs, nose bleeds, vomiting that has been a constant in our lives. But we have survived, I would cautiously even say Sophie has thrived. Our "5 bites" campaign in the past 3-4 months has paid off dividends with higher weight gain, a bit more energy, and a hopefully easier wean off the TPN later. Very encouraging to compare pics these days to the ones in the spring/summer, and see how much fuller her face has gotten.

Alas, we will still be at the mercy of the every 3-month MRIs to make sure this medulloblastoma beast doesn't show up again. MRI in Feb, May will probably keep her port in until then. From then on, it's a new road of endocrinology and growth hormone, renewed focus on rehab at Marianjoy, etc.

By the way, we are in the very early stages of planning a BIG celebration in Feb or March. Anyone who know us, knows Soph, reads this blog, or "likes" our feisty fighter facebook page is welcome to come. Even if you don't know us, we want you to come say hello & meet us, give us a hug, give Soph a hug, and have a bite to eat or two. Not sure when yet, not sure where yet. I want to do an open-ended thing, where people can come when they can, but focused also for the kids to enjoy kids activities. Our house would be ideal, but I'm not sure it's big enough to handle lots of people. Stay tuned for more details, and any ideas would be appreciated!

What can we do but be thankful for how He's brought us through. Long and sleepless nights, hours of reading stories of other children with cancer, how others have handled the same diagnosis, wishing we could do a Dells trip with other friends, but we are here. Where God wants us to be. and we need to keep listening for His voice.

Please keep praying for the Wons, they are almost 3 months into their cancer journey, and there's a long road ahead. Weekly visits for chemo, as well as daily administering of other drugs. They are so very encouraging with their rock-solid faith.

Happy New Year, everyone. Thanks for your unceasing prayers, thoughts, messages, love. It's kept us going in 2013, and we are looking forward to the hope of 2014

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