what not to say...

We've had a lot of conversations over the past 3 months since this night mare began. So many caring people have reached out to support us, and all of you have literally kept us alive with food, money, love.

There are a few things that we have come to realize in those many conversations, and it's hard to really explain in person. We find ourselves often holding back, or not giving the full story sometimes, not because we don't want to, but because we have to consider our audience. We know it's hard to find words to say to us, and sometimes there's nothing that can be said.

Jeannie came across a blog of a parent who lost her daughter to a brain tumor, and she posted a few useful/insightful posts that resonated with us. One of them is titled "What Not to Say to Bereaved Parents." Granted it's more geared towards the loss of a child vs. still having a child, but I've taken her list, and put some of my own thoughts/modifications:

• "My mom/dad/sister/cousin/aunt/friend had cancer..."
• Yes, cancer is age-indiscriminant and it's terrible for anyone, but there something about a 4-yr old having cancer that makes it seem worse than say, someone who's closer to the end of a long life with a cancer diagnosis. While we don't wish cancer on anyone, it's just different when it's your own child who's 4. Also, there are too many different types of cancers out there, and while all of them are devastating, brain cancer in a still-developing child has got to be one of the more jarring types/incidents. It's just not the same, and relating a story of an adult you know who has cancer doesn't particularly help us.
• "Let me know if there's anything we can do..."
• Most of the time, we don't know what we need, or what you can do for us. The 2 ways we have thought of, bringing/sending us meals, and donating money, are the 2 that are always available. If you can think of something, ask us, and we'll let you know. But honestly, even more than meals and money, right now, I think we crave friendship, listening ears, and fellowship. Set up some time with us, come over or we'll head over, and let's just be friends.
• "I can't imagine what you're going through..."
• Neither can we. At this point, sympathy is something we know everyone feels for us, but in and of itself, it doesn't really do much.
• "You guys are so strong..."
• We are not strong at all. We have no choice in this matter but to move forward. It's what every parent would do in our situation. Thank you for the encouragement, but we are no more special than any other parent who loves their child.
• "Happy Holidays/Christmas/New Years/Birthday"
• Again, it's not as much of an issue, but in general, our life is not as much about the weekends/holidays/vacations, as it is about Soph's next set of appointments and how she's feeling. Those will mostly be our milestones for the next year or so. But we will try to make birthday celebrations, Christmas as special as possible for the girls.
• "It will get better..."
• How do you know? It could get worse. What if Soph has recurrence? What if the chemo has a stronger side effect? I get the "let's have a positive attitude," but it's not easy.
• "You guys (Soph) look great..."
• We might look the part, but looks can be deceiving, and usually cover up the turmoil inside.

I don't want this list to discourage anyone from saying anything, that's not the point. It's just a glimpse into the impossible conversations we sometimes have in 2 minutes or less. We actually do need and want those conversations, interactions. It's almost like therapy for us. But we also know it's hard for people to know what to say or do. Just be our friends. Be there for us. Hug us. Cry with us. Celebrate with us. Talk to us.

March madness

So my Wolverines flamed out in the BTT, but I'm still hoping for a 3 seed and favorable path to the Sweet 16!

So the first chemo has come, not sure it's gone, b/c the affects of it continue on. Soph was in very good spirits the time she was in the hospital. She kept busy with the iPad, DVDs, puzzles, etc. She didn't eat much, but had fluids in her the whole time. Jeannie and I were ok too. Selah stayed at RM house with my mom, and had a grand time eating and playing.

As suspected, the MRI came back NED (no evidence of disease). I asked our neuro-oncologist, Dr. Jason, which MRI should we be most worried about. It would seem to me that the first MRI post-radiation should be clear. And he confirmed, usually this first MRI is typically NED. He says 7-8 months down the line is the one where tumor signs would show up, if it were to recur. That takes us to about Nov/Dec of this year, when we pray/hope for NED.

The bigger issue in our household this past week/end, is that Jeannie and I are sick. I have the worst case of the flu that I can remember. 100+ fevers for 2.5 days. I barely left the bed yesterday, and I'm quarantined in the bedroom, so as not to get Sophie sick. Jeannie also has a cold of sorts, combined with brief case of food poisoning (we think). It's been a rough weekend for us. My theory is that it's from subconscious stress from the past week.

Soph is on TPN, which means she's hooked up to a nutrition bag overnight. It gives us peace of mind that we know that she's getting everything her body needs, albeit thru IV, not thru her gut. Jeannie and I have had to learn to administer, connect, clean her port and TPN. It's something you never thing you would have to do it, but here we are. Consequently she doesn't eat much during the day, except snacks and her anti-nausea meds thru juice.

The good news in all of this is that Sophie seems fine. She's been at home since Weds night, but doesn't seem to mind. She's in good spirits, and has been able to avoid sickness, so far. She's been smiley, happy for the most part. Selah is fine too. We thought she was getting a bit stir crazy, so we sent her off to church with friends this morning.

We'll have to go downtown again on Tuesday for her vincristine chemo push, b/c the hospital had some safety concerns with home health administering chemo. Otherwise we hope to kick this flu/cold out the door and move on.

1 day of chemo down!

Today was our first day of chemo. Here was the rough schedule:

• Left around 7:45am, 30 mins later than we wanted to, and we paid the price with a 1.5 hr commute downtown. Originally wanted to get to Lurie by 8:30, but got here more like 9:15.
• 9:15am - Audiology appt first thing, to establish a baseline b/c cisplatin will most likely affect her high-frequency hearing.
• 10:30am - Clinic visit with our neuro-oncologist and APN, to discuss how she's doing, what to expect, etc.
• 12:30pm - Move to the 17th floor to our room, where we'd be for the rest of our stay.
• 1:30pm - Start the pentamidine (pneumonia vaccine) for 2 hrs
• 4:30pm - Get her hydrated in prep for cisplatin/lomustin/vincristine
• 5:30pm - Administer the chemo cocktail. Cisplatin is infused over 6 hrs, so she's still on it.

Overall, not a bad day. It went by somewhat quickly, and Soph was in good spirits for most of the day. She ate ok, not great, and was generally pretty agreeable to everything today. Much different than our 18-day stay back in Dec. The iPad kept her company, as did some sticker books, and her little sister who came between 4-6:30. Thank you all for your prayers, I'm pretty convinced they made a difference.

Tonight might be rough though. They have to monitor her urine very closely b/c that darn cisplatin also could negatively affect her kidneys. I found it ironic that they kept saying we have to flush the cisplatin out, but I was thinking, then why are we putting it in her? It's to get it to do its job, which is to kill rapidly dividing cells, like any cancer cells, but try to get it to avoid good rapidly dividing cells. They do not have a good answer for that, which explains things like hair loss, lower white blood cell count (all rapidly dividing cells).

Tomorrow is mostly a monitor/hydrate day. We do not anticipate she will have much of an appetite. In fact, we've made the decision to put her on TPN (total parenteral nutrition), which will give her everything she needs thru her port. This will be 12 hrs/day, given at night. Means she will be hooked up to a pump overnight . Getting her to eat has been the single biggest daily/hourly/minute challenge, and this will give all of us a break of sorts.

We hope to be discharged late in the afternoon. Soph has been asking about RM House from back in Dec, so we will try to get her over there after discharge so she can check it out and play a bit. We'll probably be home early-mid evening, assuming no complications/delays.

Looming

Looming. That's a good word to describe what's to come next week.

On Monday, March 11, we'll go downtown for a full brain and spinal MRI, which will check to see if there's any sign of cancer cells. This is where we cross fingers and pray that for NED (no evidence of disease). It's what keeps many parents on edge. Hopefully we'll get back in time for the Chick-fil-a for the Cho's event at the Wheaton CFA. Please come anytime between 5-8, eat dinner there. Proceeds from the event will go towards our medical costs.

Then on Tues, March 12, Soph will be admitted to Lurie Children's for 2 days for her first maintenance cycle of chemo. She'll receive Regimen A of the lomustine and cisplatin over 6 hrs that first day. Tuesday will be a long day, and Soph will get restless for sure, being confined to her bed and connected to an IV.

Hopefully we can get discharged on Wednesday, if everything goes as planned. She also has a hearing test on Tuesday (as one of cisplatin's side effects includes loss of high-frequency hearing), and a dose of pentamidine (pneumonia vaccine).

Selah will join us downtown and stay at the Ronald McDonald house on Tuesday with me and my mom, who'll come to help. We think Selah being around will be a positive influence with Soph, and us too. I remember back in Dec, how the youngest and most naive of us Cho's, was able to lift our spirits with her warm, happy personality. (She's the nicest one in our family, btw)

Please pray that there will be no complications, for Soph to not get too annoyed/mad/restless, and for us to trust that God wants the best for Soph.

These past 3.5 weeks or so of no treatment, no hospital visits has flown by. Life feels somewhat normal, with work for me, Soph back in school full-time (she didn't want to just stay for an hour!), but it's not normal.

People ask us all the time how we are doing. Mostly out of habit; most conversations respond with a "fine" and everyone moves on. We are not really fine, but sometimes we say fine, to spare the other parties of the difficult realities of our situation.

Cancer is one of those things that doesn't go away with time. You could be sick, with a cold, or maybe something more serious, like mono, break a bone, and most of those things get better with time. Cancer doesn't. One could argue that with chemo/radiation treatment, it does get better by killing those cancer cells, but the terrible side effects from those treatments always leave a cloud above your life.

We have still yet to fully accept our reality, and try to move on with completely positive attitudes. It's not easy, but we know there is power there that can help Soph, and for sure help us.

Chick-fil-a for the Cho's on 3/11

From Sophie's end of radiation celebration on 2/12/13

Our good friend Samantha has setup a Chick-fil-a for the Cho's night at the Wheaton Chick-fil-a. If you plan to eat dinner on Monday, March 11, and are within reasonable driving distance to the Wheaton area, please come and EAT MOR CHIKIN from 5pm-8pm. Soph has an MRI scheduled for that day, but hopes to stop by and grab some nuggets. I might try to be there for a bit separately; it will depend on the schedule, which we'll find out later this week.

Wheaton Chick-fil-a
301 East Loop Road
Wheaton, IL 60189
630-668-8350

Here's the message from the facebook event:

Who loves Chick-Fil-A?!?!?!?!

In honor of sweet Sophie, Chick-Fil-A is hosting a Spirit Night on
Monday, March 11th 5-8PM in Wheaton (by Whole Foods).

4 year old Sophie was diagnosed with medulloblastoma (pediatric brain cancer) and she's tackling this ugly thing like one tough cookie.
Let's rally together in support for Sophie & family and show this cancer what she's made of!

**Bring your families & EAT MOR CHIKIN on this special night to cheer our Sophie on!!**

A percentage of sales from this event will be presented to the Cho Family.
PLEASE MENTION SOPHIE when ordering.

A $1 Spinning Wheel (everyone wins) will also be set up to win free Chick-Fil-A YUMMIES! All proceeds from Spinning Wheel go to the Cho's!

LET'S PACK THIS PLACE!!!


~Please SHARE & pass along to friends, neighbors, co-workers in this community!!!

For More Information on our Sophie:
http://feistyfighter.blogspot.com/p/about-sophie.html