Monday, January 13, 2014

Consider It Pure Joy

Top: August 2012 before diagnosis, Feb. 2013 during radiation treatment
Bottom: June 2013 during chemo, September 2013
Isn't she beautiful?

This post has been brewing for a while in my heart, but I didn't want to admit this is truly what I believed.

See, I subscribed to the "truth" that if I'm a good person, ONLY good things happen. God allows bad things to happen to those that deserve it. I did well in school, graduated from college and graduate school, helped my family, and got a job to support them and myself all while serving faithfully at church. And I would continue to do so after getting married and having children. I was a good girl.

I was shaken to the core when we heard Sophie's medulloblastoma diagnosis in December of 2012. Never will I forget the doctor's words that there was a mass in our daughter's brain, nor will I forget the doctor's look that she was not kidding. One of the first thoughts of mine that night--"Lord, this can't be true because my faith is too small. This only happens to other people." And how did this happen? I made sure to do good things, be nice to others, be that good Christian girl that could help in any way. That was even one of my spiritual gifts--helping.

But these past 12 months, God's repeated that He doesn't care about what I do--helping others, attending church, making sure I look good on the outside, or even that I wear nice clothes to look good to others, because my heart was so dead. And I did what I wanted when I wanted. I lived for myself and told others it was for God.

One verse in high school that God used to help me through family hardship was James 1:1-2. "Consider it pure joy, my brothers, whenever you face trials of many kinds because you know that the testing of your faith produces perseverance." Everyday that I read that verse, it encouraged me to look to the Lord for strength and hope. God walked with me and He knew exactly what I was going through. Life was difficult, but I still felt close to God.

Then verse 12: "Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him." In high school, being promised this kind of reward was enough. Now? I don't want the crown of life. I want the crown of being happy, having a nice house, and healthy/happy/smart kids.

But when people pray for me, when I remain still for a moment after waking for another of Sophie's potty trips at 3 AM, I know these wishes are short-sighted. Because my beautiful daughter will only live for so long--hopefully 80 plus years. But if not, there is an eternity with this living God where she WILL be cancer free-- running, dancing, playing. She won't have a brace and walk differently. She won't have to deal with vomiting every night or becoming tired from 2 hours of school or chemo running in her tiny body. She will receive this crown of life--and know its true worth.

These days, I'm less stressed than the beginning of our journey with cancer. Even with a newborn, traveling-for-work husband, 2 other girls in school, I know that God is the only one who can give me peace and joy during this time. It's not just a getting-through-it mentality, but I need God whatever comes our way.

One song that the girls constantly request is "God is Able"--our anthem/theme for the past year. Taken from Ephesians 3:20-"He is able to do immeasurably more than we ask or imagine, according to his power that is at work within us, to Him be the glory in the church and in Christ Jesus throughout all generations, forever and ever! Amen." What is it that is more than we (the Cho family) could ask or imagine? We are praying the cancer never comes back, that a cure is found so no other children and their families have to suffer this hell on Earth experience, and that Jesus is given glory throughout all generations to come.

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