Sunday, December 30, 2012

Here we go.

After almost 2 weeks at home, without too many obligations besides a few rehab sessions, this is the week where everything starts.


  • Lurie Hospital visit at 7am for MRI, neurosurgeon follow-up at 8am to remove stitches
  • Rehab at Marianjoy at 12:30pm for an hour
  • Happy New You! 2 yrs ago, when Soph was starting to talk more, she called it Happy New You instead of Happy New Year.
  • Visiting family
  • Jason's mom comes in town to stay for 10 days
  • Michigan beats S. Carolina in the Outback Bowl. Go Blue!!!
  • Proton therapy at Procure in Warrenville at 6:30am, probably be there for 2-3 hrs
  • Rehab at Marianjoy at 1pm for an hour
  • Jason off to work downtown
  • Proton therapy at Procure in Warrenville at 6:30am, probably be there for 2-3 hrs
  • Rehab at Marianjoy at 3pm for an hour
  • Jason off to work downtown
  • #2 Michigan beats Northwestern in Evanston in basketball
  • Proton therapy at Procure in Warrenville at 6:30am, probably be there for 2-3 hrs
  • Jason work from home (hopefully)
  • Proton therapy at Procure in Warrenville at 6:30am, probably be there for 2-3 hrs
  • Rest
  • Visit Costco
It will be long days for Sophie and Jeannie. Please pray for strength for both of them. Soph hasn't been eating as much, and she hasn't gained the weight that she lost from the hospital stay. We're trying to get her to eat more, and we got Pediasure to help, but she may not drink one/day. I hope to avoid any idea of a feeding tube down the line. She's getting better each day with walking, but she's got a ways to go still with her coordination with walking and her left side.

Follow-up to the last post. I got a few responses of encouragement, and today's message at church also gives me some hope. I'm leaning towards the idea that God wants Soph to be healed too, to live, to thrive. But the fact that we as humans chose sin from the start, has caused this world (and our bodies) to be broken. I'm still not fully understanding of why our 4-yr old, but I have a little more hope that God desires healing. Still would welcome your thoughts and correction of my theology/view of God.

Friday, December 28, 2012

God thoughts...

Last Sunday at church, many people came to give us half-hugs, pats on the back, looks of empathy/sympathy. All are much appreciated, kind of weird, b/c we are not used to being noticed.

One dear friend, upon hearing the story of how/why we came to church, said something along the lines of, "God's handiwork is evident in so many ways." He was referencing a few things, I believe:
  • The story of how Soph wanted to change clothes, and started to put on her shoes, b/c she wanted to go to church.
  • The fact that we moved to Wheaton 1.5 yrs ago, when we had little connection here. I've even commented to Jeannie that once our 7-yr ARM expires, we're moving back up to the NW suburbs. Where we live happens to be 5 miles from Procure, where Soph will get her radiation therapy, and 1 mile from Marianjoy Rehabilitation Hospital.
  • How we've found a genuine, good community group here in the SW suburbs, who have embraced us, helped us, supported us.
  • How Soph has recovered post-surgery very well, and how her cancer has been downgraded from anaplastic to classic.
All of these can be attributed to the goodness of God (or luck & coincidence, for the God skeptics). God is certainly good in the above circumstances. But as the friend mentioned this, I couldn't help but to also think that God allowed this brain tumor to grow for 3-6 months, or however long it was in there. Is God still good b/c He allowed this to happen?

Before I go on, let me state that I do believe that Jesus is Lord, that he died for our sins, and that He is in control of all things, good and "bad." He is sovereign, almighty, and is the only hope we have in this broken world. Even with trusting the doctors, the treatment, I know that ultimately it is God who can and may heal Sophie. I am not mad at God at all; I don't think anything productive can come by being mad at Him. 

I think that one cannot just "cherry-pick" the things about God that we want to feel warm and fuzzy about. In the past, I would hear a lot of prayer requests about people's health, some very serious. From early on, as early as the college HMCC-Ann Arbor days, I never felt comfortable praying for absolute, complete healing of physical ailments. What if God's will is not for miraculous healing? How about the countless people, children who have left this world? Weren't there armies of people fasting & praying for them to be healed? That is why my prayers do not ask for a miraculous healing; more of a peace with what God's will is. I am afraid that God's will may not be for a miraculous healing, and I don't want to be disappointed if that's the case.

Being a supply chain guy, one of the main priorities in my job is risk management. I coach my team to analyze as many options as possible, identify the level of risk with each option, then present to senior management to make decisions based on the information and data that we give them.

I can't help but to think of the various options and risks associated with Soph in our circumstance, in order of most desired scenario:

  1. We go through the next 1+ year of radiation, chemotherapy, etc, and Soph's cancer is vanquished, with no recurrence, and zero/minimal side effects from the treatments.
  2. We go through the next 1+ year of radiation, chemotherapy, etc, and Soph's cancer is vanquished, with no recurrence, but with some significant side effects like learning disabilities, spinal issues, etc.
  3. We go through the next 1+ year of radiation, chemotherapy, etc, and Soph's cancer is vanquished temporarily, but recurs within the next 5 years, thus severely limiting options for further curing.
  4. We go through the next 1+ year of radiation, chemotherapy, etc, but the cancer comes back even during the treatment, and there is nothing we can do.
Now thinking of the scenarios along with God's will is where I get scared and nervous. How can we pray for healing and long-term survival if God's will is #4? Is it a question of faith? Do I just not have enough faith? How can you reconcile the amount of faith and trust with God's will? Can prayers of many changes God's will? That's why my prayers are more for peace with His will, and for Him to be merciful to our family. I'm not afraid to admit to Him that I want option 1, but I am afraid if it's not His will.

Monday, December 24, 2012

Twas the night before Christmas...

It's been a nice 6 days at home. Soph went to rehab on Fri, the first half of occupational therapy that went well. The second hour of physical therapy, not so well. She was getting tired, and the therapist went a bit too far in getting in her personal space. This morning we went for a speech evaluation, and that hour went well. She's still pretty wobbly, can't walk without assistance, but she is determined to keep trying on her own. It's heartbreaking to hear her, in her moments of calm, when she says, "I want to walk like Selah, like how I walked before I went to the hospital." We keep telling her to keep trying every day, and that Marianjoy will help her.

We also made it out to church on Sunday. Originally we were going to send Selah with some friends, but as Soph saw Selah get dressed, she wanted to get dressed. Jeannie put her in a dress, and we thought she'd just wear it at home. But then she made her way downstairs, and started to try to put on her shoes. I asked her where she was going, and she told me, church! We tried to tell her that she should stay home and rest, but she wouldn't have it. So Jeannie, my sister, and I scrambled to get dressed, cancel Selah's ride, and head off to church. We didn't stay the whole time, but I think it was good for her to be there.

This week should also be fairly quiet, with probably a few rehab visits on Thurs/Fri. We have not yet heard from Procure on an official start date for radiation, but we are presuming Weds, 1/2, which is also the first day I'll be heading back to work.

Otherwise, we are trying to enjoy our time together. Soph still gets very angry, frustrated, especially when she can't move her left arm the way she wants, or can't be as mobile as she used to, but we are surviving. We are trying to get the girls back on their normal sleep schedule. Selah is having a tougher time with naps, insisting that someone stay in her room until she falls asleep. My sister left yesterday, so we are on our own until next Tues, when my mom comes in to help around the house & watch Selah when Jeannie/Soph head to radiation, rehab, or clinic visits downtown. Much thanks to those who have brought us meals while we've been at home. Definitely can feel the love and support thru food, messages, emails, texts.

Merry Christmas to all.

Thursday, December 20, 2012

Calm before the storm

We've been home now for 2 days. It's been nice to be home. We've cleaned, scrubbed, washed most of the house, even the fridge, so that we have a clean environment. Outside of yesterday's 4.5-hr visit to the proton center, and a quick haircut/Target trip for Jason, we have not left the house.

Soph has spent most of her time either on the couch or in her bed. She is still a bit wobbly, but is getting better everyday. She still has her moments of super frustration and anger. In a calm moment, she told Jeannie that before she went to the hospital, she could walk, but now it's hard for her. It must be so frustrating that our little energizer bunny Soph was always running around, running circles around everyone, but now her little sister is the one that is running ahead of her. But she is sleeping more, eating some (could be eating more), and enjoying being home.

We have a 2-hr consult tomorrow with Marianjoy Rehabilitation Hospital to start her rehab. She seems to have her strength, but her coordination, especially on her left side is lacking.

I think the next week or so should be fairly quiet, with minimal visits to rehab, but starting late next week or the following week of 12/31, will start the daily radiation therapy, which could be 2-3 hrs/day, plus clinic visits downtown. It will be crazy.

From a treatment perspective, we got word yesterday that considering the circumstances (pediatric brain tumor), we got the best possible diagnosis of classic medulloblastoma, with no tumor cells in the CSF. This is important, b/c her cure rate goes up, recurrence rate drops from 30%-35% to 15%-20%. And she will get a lower dose of radiation, which will be better long-term. Thank you for all of your prayers. With the maximum resection (removal) of the tumor, quick recovery from surgery, and the most optimal diagnosis, I'm beginning to think that God may want the best for our situation. My prayers every night aren't long, but they always end with asking God for mercy for Sophie.

We are home, but things are not the same. It's like a cloud hanging over our heads. I'm anxious about having to go back to work, and not being able to be here helping out. We are determined and will get thru this, but it will not be easy.

If you missed the last post about changing the way you can help, please refrain from contacting Jen. Instead, we'd like to direct you to our meal train site, where you can sign up for meals, or help financially.

Wednesday, December 19, 2012

Home Sweet Home!

So we got the exciting news yesterday that we were allowed to go home! Yesterday was a frantic day for us, prepping to go home. We didn't quite realize how much stuff we had accumulated both at the hospital and at the Ronald McDonald house! Thanks to all of your generosity, we have snacks to last us for a loooong time.

We wanted to miss the rush hour traffic, so we left around 6:45, and got home promptly at 7:30. It was then a frantic hour of running around, unpacking, cleaning, re-organizing and just getting used to being back home. Jeannie's mom had thankfully been there earlier in the day to help, and Jason's sister flew in yesterday to help as well.

Sophie took her customary seat on the couch, and her demeanor was noticeably better, being in her own home. Selah also was happy to have a full house, and it was so nice to watch the sisters interact after not being able to play with each other for over 2 weeks.

Unfortunately, we didn't have much of a break, as we are at the CDH Proton Center. Because the recommendation is for Soph to begin proton radiation therapy no later than 30 days after her initial surgery, they called yesterday and asked us to come in today at 6am. I asked for a day to breathe, but with the holidays, and the 30-day constraint, we had no choice but to come in today to get started on her prep.

We hope the next week will be a bit quiet, before radiation starts up either late next week or early the week of 12/31. Then it's a whirlwind of daily radiation treatment, weekly clinic visits downtown, and any other miscellaneous appointments in between. Jason will also have to go back to work that week, so it will be the start of our crazy, new normal.

We could not have survived the past 2.5 weeks without all of your help, and we will continue to welcome any help we can get. To that end, instead of contacting our friend Jen now, we'd ask that you check out our meal train to find tangible ways to help and easier ways to organize and check for everyone. There you can actually pick a day to bring dinner and/or visit. There is also a place for donations. Please do not feel obligated to give anything. As we start this long journey, we are actually quite unsure of what we'll need going forward, but we thought it best to have the option.

Thank you again for all your prayers for our Sophie. More updates to come.

Monday, December 17, 2012

Sweet Selah

The youngest member of our family, Selah, could arguably be the one holding us all together. Many of you know, Seah*, as we affectionately call her, is the sweetest, friendliest, warmest, cuddliest Cho. She waves to strangers, will go to almost anyone who gives her food, and loves to be held and cuddled.

The first 4 days of our new normal, Seah stayed in Wheaton with grandma. But we missed her terribly, and it seemed that though she was in her own house, sleeping in her own bed, something wasn't quite right. So last Thursday, we brought her downtown to stay at the Ronald McDonald house. We knew it'd be a challenge, but our family has stepped up to help watch her, with my mom, and 2 sisters coming for multiple days at a time to take care of her. She's been super-flexible to sleep in a strange place, adjust to a new schedule, and bring her loud, warm, contagious personality to everyone she meets at RM house, and the hospital.

She comes to the hospital after her nap every day from about 4-6, and that has been the most precious time and the time that I most look forward to every day. She mostly is looking around to see what new toys her sister has received or seeing what snacks she can pilfer, but I know her being there makes such a difference to Sophie, me, and Jeannie. Though I'm sure she knows things are different (Unni has ay-yahs in her head), she's been the same sweet Seah that we so dearly love. The person that knows the least about this terrible cancer situation is the one that is keeping our spirits up with her bouncy, bubbly manner.

God is using this precious 2.5-yr old girl to keep us sane and whole in this unbelievable time. Jeannie, Sophie, and I love her so much!

*Background on why we call her Seah...when she was born, 2-yr old Sophie couldn't quite pronounce the 'L' in Selah, so Seah has become our name for her.

Prayer request: The past few days Sophie has been having some major, major meltdowns where she gets so mad, she rips off some of her heartrate stickers, and is inconsolable for up to an hour, yelling at everyone (including me and Jeannie) to go away. We do not think it's pain (she's been off pain meds most days), but it's more that she's sick and tired of being there, and just refuses to comply. It's been difficult for us to see her  in that state, and she's extremely uncooperative with the nurses and other staff at the hospital. Please pray that God would calm her mind, give her peace beyond her understanding.

Saturday, December 15, 2012

She's our baby

(Most of the entry was originally written on Monday, December 10th. I struggled with posting this on the internet because of privacy, but needed to free up some head space. Plus, people keep asking me about my thoughts.)

This past week felt like a haze. I just wanted to pull Sophie, Selah, and Jason out of this mess and come out the other side, telling them, "Let's wake up now. It was just a bad dream. This only happens to other people."

But we're here at the hospital and have been for a week and will be for another two, possibly. What part has been the worst? Possibly when they brought us into another room of the ER to tell us of the 5 cm brain tumor when we expected to get a prescription for a viral infection? When we couldn't go home but immediately got transferred to Lurie Children's Hospital downtown? When the 10+ hour operation took place 12 hours after knowledge of the tumor? Or her devil-child tantrum when waking up 36 hours post-op and then when a doctor asked me if she normally acted like this? Watching her re-learn how to stand, walk, eat, talk, use her muscles? Or making sure Selah doesn't get scared seeing her unni in the hospital bed hooked up to tubes/monitors? Worrying about Selah because she was with me 24/7 and now wondering what she's thinking since I'm not there with her? I'd say all of these moments weigh pretty equally.

After discussing Sophie's future with the pediatric neuro-oncologists, questions raced though my mind about Sophie's life after her radiation and chemo treatments. Will she be a happy, lovely, smart, active girl? Will she be herself? Because in my mind, her life should consist of going to school, playing with her sister, insisting everyday that she wear a short-sleeved shirt in 30 degree weather rather than listening to me, playing with her dad telling him "No, Appa, don't do that." She should be telling me that one friend picked their nose at school and had to wash their hands. Who the line leaders and helpers were that day. How she wants to eat pasta with parmesan cheese. I want to hear her random singing of Gangnam Style, 1 Little Indian, Making Melodies. I miss her coloring within the lines and writing everyone's names and proudly showing me. I want to see her smiley eyes that make my day better. These little mundane moments are so big now, so normal and that's what I want back.

 But with each day passing I'm reminded God is with us. He hasn't forgotten about us. He's here in the suffocating hospital room. When people visit and bring food, He's here. I'm thankful that they ran the CT scan in the ER and that the tumor was operable. And even with the potential proton therapy and rehab facilities less than 10 minutes from our home, it's a reminder. I kept wondering why we moved to Wheaton last year. My family is from the northwest suburbs, our church is located near our townhouse in Elk Grove, we were comfortable in that area. But our community group now has been a huge source of strength and Sophie's teachers and classmates are praying for her. God was in all of this and for that I'm thankful.

He's even answered little prayer requests. If you know Jason, you know he's a talker. Me--not so much. Each day after work he'd ask if we could talk/connect but a lot of times I'd be too tired from the day with the girls that it would be difficult to do so. But here at the hospital with the overflow of visitors, he's able to talk everyone's ear, arm, and leg off and really able to process everything. I see him getting strengthened through those times and  it's helped us to re-connect with some people and meet new friends as well. Also, our little Selah has such an easygoing personality that each caregiver is just another person to run around with and feed her. She doesn't care who gives her food as long as she gets it.

And when I look at Sophie, I am thankful. She is my beautiful, fun, stubborn girl that is only 4 years old, but really has the inner strength of an army. God made her knowing that she can withstand this long ordeal. He knows every detail of this girl. Of course I want God to answer the whys of this situation. Why our daughter? She's still a baby. She's too young. There's no reason or cause for this to happen. But still,  I have no doubt He loves her and cares for her. Because if I get stuck in the pit of whys, I will stay stuck there. And I can't afford to do that with all that is to come.

2 weeks to the day...

when we took Soph to the ER at Central Dupage Hospital, and received the first shock of our nightmare, that the CT scan revealed a 4cm (later upgraded to 5cm) tumor in her brain. What a whirlwind of 2 weeks, all of our December has been spent in the hospital here.

We met with the neuro-oncologists yesterday, and they gave us the update that the medulloblastoma, initially thought to be the more aggressive, high-risk, anaplastic variety, has been "downgraded" to the classical category, which is more of an average-risk diagnosis. Here's a link to the American Brain Tumor Association site on medulloblastoma. The PDF brochure at the end of the article is a pretty comprehensive explanation of Soph's condition, in layman's terms.

This changes things a bit with regards to our treatment plan. They are still awaiting the second opinion from Mass General, but the chemo will change from a more intense 6 cycle, 6-7 month plan to a more prolonged 12+ month plan. That's a bit harder to swallow, b/c we were envisioning a long, but intense 10 month treatment, but now it seems to be longer than a year for her total treatment.

But we have to keep in mind that our goal is to obliterate this cancer, so that she is cured long term, and even if it's a rough short-term (1+ year), our goals are long-term in nature. We have to keep reminding ourselves of this.

We are still on track for Monday procedures to remove her EVD, spinal MRI, lumbar puncture, and port placement. This week has been a bit of a slow week with new news and updates, but we have a feeling next week might be fast and furious. There is a real possibility we might be discharged towards the mid or end of next week, so it'll be a busy week trying to move ourselves and all our stuff back home, then try to get settled in at home with our new normal.

Thanks again for all of your prayers, visits/food, emails, facebook messages, comments, texts, and offers to help. We definitely could not have survived these past 2 weeks without your help. It's just the start of our journey, and we'll definitely be leaning on all of you in the months to come.

Thursday, December 13, 2012

Turning the corner

Last night was the best night we've had since the Sunday we were admitted. Soph and I both slept 7 hours! We read books at 9pm, chatted about everything until about 10pm, then both went to sleep. She woke up around 11 whimpering, and the nurses gave her some Toradol for pain, and before I knew it, I woke up at 7:20 wondering if I just blacked out! Nurses confirmed that she slept the whole night!

So Soph seems to be turning the corner a bit on recovery. She's sleeping more, in more of a pleasant mood than not, and not taking as many pain meds as before. She still has her cranky moments, more b/c she's sick of this place, but physiologically, she is making good progress.

We have had some good, quality family time. Selah has been coming by from about 4-6pm every day to spend time, eat together, play, chat. It has been so nice to have all of us together, laughing, playing, eating, smiling, fighting over Soph's new toys and stuffed animals. We are thankful that Selah is our "easy" baby, that she can be with anyone, that she's friendly, easy-going, etc. She's been here downtown for exactly a week, and it seems like she's been adjusting fine.

We are still awaiting our second opinion from Mass General, and having more specific conversations with the team about the treatment phase.

Otherwise, the neuro-surgeons are targeting next Mon, 12/17 as the day they remove her EVD, put in her port, get a spinal MRI, and a lumbar puncture. All of this would be done so that she wouldn't have to have multiple sessions of sedation and surgery. Once we get all of this, we are thinking that we spend a few more days in the hospital to make sure there are no complications. We are cautiously optimistic that we might be able to go home mid-late next week!

Once we are home, we are in for physical therapy, which would most likely happen at Marianjoy Rehabilitation Hospital in Wheaton (!), less than a mile from our house! Proton radiation therapy, once confirmed as the way to go with neuro-oncology, will also start pretty soon, most likely at the CDH Proton Center in Warrenville.

More to come later, as we confirm the treatment plan, and get an idea on when we can go home. In the meantime, thank you all for your prayers, visits, food (we have lots of leftovers!), hugs, emails, facebook comments, blog comments, texts, etc. Everything is so appreciated, and it helps us get through the days. 

Monday, December 10, 2012

1 week in...

Technically, today was our 9th day in this nightmare that we can't wake up from. Not a lot of major updates these days. Trying to grasp the enormity of our situation, the long road ahead, and trying to get thru each day without collapsing from exhaustion or despair.

Soph is progressing. Doctors are pleased with her progress. She is eating more (though it's hard for her to keep it down sometimes), moving her her arms and legs (though she favors her right side), and we even got her to laugh and smile a few times. We miss our smiley Sophie. She finds comfort in some of her favorite shows, Doc McStuffins, Sofia the First, Max and Ruby. We brought the tablet PC from home and the occupational therapist is using it to help Soph. She still will get super mad at the nurses and doctors and fight like crazy, but I think she is slowly understanding that she has to stay here to get better.

From the treatment perspective, the second opinion process has started from Mass General. I honestly do not expect anything drastically different; we are still leaning towards the proton therapy from the Warrenville location, 5 miles from our house. The biggest question I have is how much of a difference does experience make in proton therapy? Warrenville has only been in operation for 2-3 years, where Mass General has been doing it a lot longer.

The convenience of Warrenville is so nice, but we want to make the best decision possible for Soph. Please pray for wisdom with that.

I have been connecting with other families of pediatric brain tumors, specifically medulloblastoma, and it's a sort of double-edged sword. On one hand, it's amazing to hear from people who know what you are going thru, and are so kind and open, even with complete strangers. On the other hand, it's disheartening to read the trials, struggles of those who are farther along the treatment path. It will be the hardest next 10 months of our lives. I was talking to my sister tonight, and we have been so sheltered from difficulty in our family. I'm trying to be strong, but I've never really had to be strong.

Thank you all for your prayers, visits, food, hugs. It's really, really humbling and we are overwhelmed with gratitude that people are standing with us, supporting us, loving us. Keep it coming, we need all the help we can get. Continue to work with our family friend Jen Cho (jencho2000 at yahoo dot com) for visits, meals, etc.

Saturday, December 8, 2012

shifting focus...

I would call yesterday a day of shifting focus. It's amazing how our perspectives change so drastically from day to day. Last Sunday, we couldn't think of anything beyond that day, just to make sure Sophie would make it through the surgery.

As the week has progressed, the focus moved from surviving the day, to how long we'd be here (we're still thinking about 3-4 weeks total), to the long treatment road ahead (9-10 intense months), to now her quality of life in the years ahead.

While we are surely not out of the woods yet, with her hydrocephalus, general surgery recovery, rehab (speech, OT, PT), we're starting to think ahead. Even the challenging days of treatment, though we know they will be hard, frustrating, tiring, WE WILL GET THROUGH IT. We'll need all of your help with the radiation therapy, chemo, too many visits to the hospital, but WE WILL GET THROUGH IT.

Today was an interesting day also, along similar lines as thinking long-term, as I got in touch with an old college acquaintance who is a radiation oncologist in Boston, specializing in medulloblastoma, the same cancer that Sophie has! It was good to hear a frank perspective from an expert in the field, and he also brought up an alternate radiation therapy, called proton therapy. Only 11 locations in the US operate proton treatment centers and one happens to be in Warrenville, which is all of about 5 miles from our house!!!. We brought it up with our neuro-oncologists, and it turns out they were actually leaning towards this treatment anyway, just didn't mention it in our initial treatment plan conversation on Weds.

Anyways, we are still going to get a second opinion from Mass General for peace of mind, but are leaning towards the proton therapy, b/c the advantage of being able to localize the radiation is appealing to us. Radiation therapy can have some long-term side effects, and the localization ability of proton therapy might mitigate the risk of some of those side-effects.

Of course, nothing is guaranteed through all this. There is data out there, but not a lot. Everyone is different, reacts differently, but we are determined to fight this through, and we believe that the faith of all of you interceding on our behalf will make a difference in this battle.

Friday, December 7, 2012

Happy Birthday!

Today is Jeannie's birthday. It's not the way that any of us imagined it to be, but here we are, and we'll make the most of it.

Not much more of an update on Sophie. She's still recovering from her surgery. She hasn't talked as much as she did the first few days; they think it's part of the surgery side effects they refer to as cerebellar mutism. She's tired, doctors/nurses/therapists walk in all day, poking, prodding, checking, and it's really hard for her to get some rest. We are going to start to assert ourselves a bit more to not bother her when she's sleeping whenever possible.

She still has an EVD (external ventricular drain) that they are constantly monitoring, since the tumor blocked normal drainage of her cerebrospinal fluid.

Otherwise we are trying to get her on a somewhat of a schedule of reading, sitting up in a chair, therapy, TV, etc.

Selah has joined us downtown as of yesterday. My mom is here through the weekend to take on primary care duties for her. Not sure how it will work out with her being here, but at least we can see each other more easily.

As always, it's always nice to read messages that people are praying for us, thinking of us. We may not necessarily be able to respond, but please know that it really helps us. We're still in shock mode much of the time, and our faith is not quite to the point where we can pray the miraculous prayers, so we are relying on the faith of all you to pray those prayers, while we try to support Sophie as much as possible.

Thursday, December 6, 2012

how to help

A lot of you have been asking how you can help. Many of you have already brought food for us, given us hugs, listened, cried, prayed with us. All of that has been invaluable and so comforting to us. We will need more of that as we progress through this journey with Soph. If you know us though, you will know that we are very independent, self-reliant, and it's hard for us to ask for help. But we do recognize that there is no way we can get through the next year on our own, or even relying on our family alone. That being said, here are some thoughts on how you can help.

  • We are staying at the Ronald McDonald House, but it's mostly a place to shower and sleep for now. Meals are provided, but we don't want to be far from Soph. So if you'd like to help, please work with our friend Jen Cho (jencho2000 at yahoo dot com) on a meal schedule. Jen has also setup some sort of a card we can use at the hospital cafeterias. 
  • We welcome visitors, but may not always be available when you come, it will just depend. We had a lot of visitors the first few days, and it was a bit overwhelming, but as the dust settles a bit, it's always nice to see a familiar face each day, so work with Jen on a visiting schedule. It'd be nice to see people just for a hello, or just to hear how your "normal" lives are going!
  • Til now, Selah has been at home, with Grandma, but we miss her terribly and the short time that we have been with her, we do notice that she's a bit quieter than normal, and that she misses her family. She has not seen her best friend/sister since Sat, and that makes me sad. So we are going to bring her here to us at Ronald McDonald House. But it will make things a bit more challenging to manage. My mother will be here this weekend to take care of her, but after that we'll need some help during the days to actively watch her, and possibly at nights to just "house-sit." If you have some time, please work with Jen on a schedule.
  • I am thinking that we'll be here at the hospital for 3-4 weeks, as Soph recovers. After that I hope we can go home, though we'll be going back/forth often, especially as she starts her treatment. We'll need some help at home with meals, drop-offs for Selah, and just general errand-running. But that's down the road.
More to come as we think of it. Please pray more than anything. For me personally, I'm not quite sure I have the full faith right now to pray the miracle prayers, so we need the faith of all of you to intercede on our behalf.

The diagnosis...

So we met with the Neuro-oncologists yesterday to confirm the diagnosis of medulloblastoma, specifically anaplastic, a particularly aggressive type of brain cancer.

We outlined a rough treatment plan:
  1. Recuperate and recover for 3-4 weeks
  2. Repeat spinal MRI to ensure no tumors in the spine
  3. Get spinal tap to test for tumor cells in spinal fluid
  4. Insert a port (think semi-permanent IV, "portal" to your body) for future ease of treatment
  5. Start radiation therapy
    • Mon-Fri for 6 weeks, ~15-20 min sessions
    • Weekly clinic visits
    • Target the whole brain and spine
  6. 4-week break with no treatment
  7. MRI
  8. Start chemotherapy
    • 6 cycles of chemo, 28 days apart, will last about 6-7 months
    • 2-3 days for each cycle at the hospital
  9. MRI every 3 months after treatment
  10. Live a full, happy, spunky life
It's daunting. I wish I could just fast-forward thru 2013. But we will get through this. There is no other option. 

more to come...

Wednesday, December 5, 2012

What's going on...

At around 7:30pm on Sat, 12/1, we took Sophie to the ER at Central Dupage Hospital in Winfield, IL. She had been sick for the past 2 weeks or so, first with a cold, some vomiting, complaining of neck and arm pain, then progressively getting worse. We got blood work done the Monday prior, but everything checked out. Pediatrician told us to wait until the following Tues to see if anything got better, but by Sat night, we knew that something was not right with our little Soph. She had little appetite, spot vomiting, and insisted on lying down everywhere she was.

At CDH, they redid blood work, which again came back negative, and moved to get a CT scan. At 10:45pm on Sat, we found out that the CT revealed a 5cm tumor in her brain. At that point we were immediately transferred to downtown Chicago to Lurie Children's Hospital (formerly Children's Memorial Hospital), since it was beyond the scope of the CDH team. Upon arrival at 2am, and further examination, it was determined that Sophie needed to undergo an MRI (to further detail/clarify the tumor), and move immediately thereafter to the operating room, where they would remove as much of the tumor as they could.

She underwent the MRI at 9am on Sun, 12/2, which confirmed the diagnosis of brain cancer, with the unsightly name of medulloblastoma. The team worked all day Sunday to remove this cancer, and at 10:45pm on Sun, 12/2, she was back in the Pediatric ICU.

Yesterday, they removed her breathing tube, and she slowly awoke. We didn't know quite what to expect, but surely, our little Sophie began to emerge. She was very mad, wanted to go home, very feisty. Long night, but she got some rest. We expect to leave the ICU today and move to the neurosurgery floor for further recovery. We do not yet know too much about the cancer; still waiting on the pathology, but the neurosurgeon is pretty sure of the medulloblastoma. She did say there were still traces of the cancer on the brainstem, so chemo and radiation are likely options in the future. She may have some rehab in her near future while she recuperates, and cancer treatment will be looming on the horizon.

We are unsure of what's to come, but it appears to be a long road fraught with challenges and hurdles. We are so confident that our feisty Sophie will battle her heart out, and Jeannie and I will give everything of ourselves to help her. We ask that you please keep her in your regular prayers, and remember our family in these tough times. Selah is in good hands with grandmothers, friends, and she is taking full advantage of the opportunity to use her sister's toothbrush. J

We have a room at the Ronald McDonald House downtown, which is a wonderful place to sleep at night, and get some meals. We aren't completely sure yet, but Selah may join us down there, with help to watch her from family and friends.

With regards to help, there's not much, outside of prayers. Our church community is mostly taking care of food things, but if you are local and want to provide a meal, please work with our friend Jen Cho ( to coordinate the schedule. I asked my sister Jeanne to look into options for the hospital cafeteria, maybe a reloadable gift card if they offer could be an idea? Local restaurants might be nice, but it'd be hard for us to get away for an extended amount of time.

For visits, we welcome visits, but please be flexible. We may need to break away, or not even be able to see you, depending on how Sophie is doing. She is our #1 priority. If you come, please hang out in the waiting areas, and one of us will try to get out to you. For Jeannie's side of the family, please coordinate visits thru Peter, and on Jason's side, most are not local, so just contact Jason (847-924-6821) if you'd like to visit.