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!

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!

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. 

There and back again

I remember some random things from that frightful Sunday back in Dec 2, 2012. A small waiting room with a TV, chairs along the 3 walls, an empty desk with a computer. No one else there since it was a weekend.

I remember that the Bears played the Seahawks in Russell Wilson's rookie year.

I remember deliberately trying to watch that game, check my fantasy team, anything to take my mind off the fact that my daughter was in surgery to remove a cancerous brain tumor that we had just found out about the night before.

I remember lots of family, friends cycling thru that room, with tears, hugs, food that I couldn't hold in.

I remember sitting in that waiting room for almost 14 hrs, wondering if my daughter would make it.

I remember being so exhausted from stress and no sleep, but not being able to take a nap or find some way to rest.

It's fitting that today, Friday, July 11, 2014, 586 days later, the day of Sophie's port removal, that they tell us to go to the 7th floor for the procedure. And as I walk in, I realize that it's that same waiting room from Sunday, Dec 2, 2012. 

This time though it's a much different feeling, much different disposition, with much more hope for the future.

When the pediatric surgeon, Dr. Hunter walked into the waiting room, with a smile, and with a bag, it hit me all at once. I've kept much of my emotions inside since those first few months, but seeing that port just really got to me.

Thank you, port, for the past 18 months. All of the blood draws, chemo infusions, platelet/blood transfusions, daily TPN that kept her nourished when she couldn't/wouldn't eat, this port has served its purpose and then some. Another milestone in this cancer journey. It doesn't end here, but today was a significant day.

...exhale...

We are done.

It feels weird. Cancerville has been where we've lived for the past 15 months, so it's odd to think that it's done. Soph finished up on Feb 12 with cycle 9, and it's been a month now. We were dreading the post-chemo side effects of fever, possible infection, but by the grace of God, it was minimal! The previous cycles that had this cytoxan chemo were brutal. Back in June 2013, Jeannie & Soph spent 3 nights at the hospital b/c of fever, and in Sept 2013, another 3 nights battling an ear infection, nose infection, in addition to fever. We avoided any fever visits this time around, and only had 2 visits for transfusions. Her counts recovered pretty quickly, and she was back to her feisty self pretty quickly. Amazing. Praise God.

We went back this past Tuesday for some post-treatment discussions with our APN, and to get her monthly pentamidine vaccine. We'll start to wean her off the nightly TPN, which will hopefully lead to increased eating, weight gain, strength. We want to get her into Rehabilitation Institute of Chicago, b/c they have this motion/gait analysis that we think will help Soph. Hopefully it'll be a baseline for us to get her back into Marianjoy as well. MRI on 3/28 and every 3 months thereafter to make sure this cancer beast doesn't come back. Clinic visits probably at the same time to check-in. Targeting July-ish to remove her port.

We also got to visit Ella Joy, who's in-patient for chemo, and met a new friend, Ava, who was very recently diagnosed with a mixed-lineage type of leukemia. Yet another precious young girl who is fighting her own cancer battle. Follow their journey here and find ways to help. Check out 3 of the bravest, strongest little girls you will ever see.

What else? We are busy planning lots of fun things! In 2013, we didn't go on any vacations, didn't visit my parents in IN, which we did about every other month or so previously, and generally stayed close to home. So we are planning to make up for lost time this year!

• Fri, March 21 - St. Baldrick's event at Soph's school, Madison Elementary. I will be a shavee. Please make a donation to St. Baldrick's to help find a cure for childhood cancer. It's a good, legit organization.
• Sat, May 3 - party, party, party! if you are reading this, you are invited! It's our end-of-chemo party for Soph. Hoping to have lots of fun activities for kids, dancing, food, video (if I can muster up my limited creative juices), and lots of hugs, thank-yous, moments. Don't bother bringing anything except yourselves, and your families. Don't worry if you don't know us well, or don't know us at all! Come in anytime from 11-3, say hi, give us a hug, eat something, drink something, dance a little! I think the facebook event is public, so anyone should be able to RSVP. If not, let me know!
• July - we are hoping to go to Lighthouse Family Retreat in FL, for a week of fun in the sun, and meeting other families who have gone thru some of the similar experiences as we have. The thought of driving to FL (14 hrs!) is daunting though, with 3 kids!
• August - Another camp, this a Brain Tumor Family Camp, which is closer, WI, I think?
• October - Make-a-Wish trip to Disneyworld! woohoo!
• go to the pool in the summer! visit the grandparents in IN! other ideas?

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.

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