Tuesday, January 29, 2013

The biggest gainer

Great news today at our weekly clinic visit. Sophie gained more than 1 pound from the last visit, which was last Thursday, only 5 days ago!!!

She has been noticeably eating more these days, and we think the appetite stimulant (cyproheptadine) that was prescribed last week is helping. Even with the help, we will take every pound we can get. We forgot to give it to her today, and she still ate a big dinner! 4 mickey mouse chicken nuggets from Costco, rice and bulgogi, 2 bowls of peanut butter fudge ice cream from Target, some craisins, and a bite of Fuji apple. (In case you can't tell, there are 3 sets of eyes (mom, dad, grandma, sometimes Selah) that keep close track of what this girl eats).

Anyways, so things are looking ok for now. We have 11 more radiation treatments, 2 weeks from tomorrow will be the last day! What to do to celebrate...

To reiterate, we are on clinical trial ACNS0331, which is the standard treatment protocol for standard risk medulloblastoma. After radiation, we have a 4-wk break, then start what they call maintenance chemotherapy, a variety of chemo drugs administered roughly every 6 weeks over 55 weeks. It will be a long year. Throughout this time we'll get an MRI every 3 months to check to make sure the cancer is not coming back. There is a term, NED (no evidence of disease) that many people use, that we will come to also know and hope for each time.

Some of you have asked what "stage" the cancer was. With medulloblastoma, it's considered a rapidly growing malignant tumor, and not really categorized by stage. Regardless of when it is caught (small or large), standard protocol is to resect (remove by surgery) as much as possible, then undergo the standard treatment protocol of radiation & chemotherapy.

Otherwise, we are moving forward. Work is picking up for me, probably will be traveling 2-3 days/month to Kentucky. Buy more Laughing Cow and Mini Babybel! My personal favorites are a combination of our (relatively) new cream cheese with our French Onion or Garlic & Herb wedge on a toasted bagel. Mozzarella Minis are also new, and what I prefer.

More to come on this, but Jeannie's brother, his roommate and some of their contacts are planning to host a social event to raise funds on Sophie's behalf. It will be on Sat, Feb 23, venue to be determined, but will be in Chicago somewhere. Wine, beer, food, a fun place to hang out, meet some people, while raising awareness of pediatric brain tumors and fundraising. If you are interested, please send me an email jtcho78 at yahoo dot com, and I'll get you more information.

Thanks for all of your help & prayers on this crazy journey so far. All of the meals, financial donations, texts, emails, comments, hugs have kept us whole.

Friday, January 25, 2013

end of another week

Finishing up week 4 of radiation. Today was treatment 18 of 31, more than halfway through. Sophie has also been tracking how much longer she has to go to "proton center," with her sticker chart, and she is seeing light at the end of the tunnel. At Procure, when folks finish up their treatment, there is a short ceremony in the waiting room with loved ones that come, or others they have met while being treated. Usually the patient brings in some extra goodies for everyone, and it's a nice milestone to celebrate. Soph saw one for an older child, and asked if she could have a party too. So when Feb 13 rolls around, we're going to have some sort of a small party for her. Maybe a local indoor gym/playplace, we'll see. Maybe we'll finally take her to Chuckie Cheese. (She always notices them on the road, and points them out. I always wonder how she even knows about it, b/c we've never been nor have we mentioned it)

Otherwise, we taking each day as it comes. Last weekend was not fun, both from hair falling out to Soph not eating much at all, but this week has been better. She has lots most of her hair, but still has some left, and it still seems attached to her head. She's also had a better appetite, in general, thank you for all of your prayers. I think they are working. But we will also get an appetite stimulant tomorrow, as she continues to lose weight each week. This week was not as much (0.5 lbs), but the continued downward trend is concerning. Hopefully with the stimulant, it will plateau or start to go up.

It's funny b/c with every meal, if Sophie is not eating, we will offer her every alternative we can think of, most of which she declines. But Selah will hear all of the options, and immediately jumps in with, "I want that!" I've mentioned this before, but little sister has no issues eating. She will try most anything, and has no internal switch to stop, unless we cut her off.

The moms switch this weekend. Jeannie's mom, who has been with us for 2 weeks, will go back to work/life, while my mother will come take over watching Selah, taking care of the house etc, for another 2 weeks.

I keep mentioning this, but it's just all still unreal to us. I can't believe I'm part of a facebook group called Parents of kids with medulloblastoma. I read everyone's stories there, many of which are eerily similar to ours, and just can't believe this is our life. Sometimes reading that is not good either, b/c there are some folks who are farther along than us, and life gets worse before it gets better, if it gets better at all. Ignorance is bliss in those times, and I just hope that Soph's side effects and/or reactions to the different chemo drugs later on will be different than others.

For those of you who are curious, or fluent in medical terminology, here's a link to ACNS0331, which is Sophie's treatment plan. Radiation for 6 weeks, 4 week break, then various chemo drugs for a year on a monthly or weekly basis. It will be a long year.

Monday, January 21, 2013

Week 4 begins...with a break!

Week 4 began today. Sort of. Sophie didn't actually go to proton therapy today. This was the week when her treatments were slated to be at 11:15. We were really not looking forward to this b/c she can't eat prior to her treatments, and we have had a hard enough time as it is trying to get her to eat. Jeannie gets a call this morning saying that Procure was running 1.5 hrs behind, which means Soph wouldn't get in until 12:45, and really not eat until after 2pm!!!

This was unacceptable in our eyes, so she called asking if we could skip the day, and also demand that we get seen earlier. It's tough to ask. We know that there are other children who need anesthesia in front of Soph and after her. But as her parents, we have to advocate for her. This weekend she barely ate anything on Fri and Sat. It's the single biggest worry for us right now. She has probably lost 5-6 lbs from the 39 lbs she had prior to Dec. She is literally skin and bones. Her sister is quickly catching up to her, which is not right.

Anyways, long story short, but we were able to skip radiation today, AND get a 10:15 slot for the rest of the week, which will help a lot. It's not as early as the 7am slot that we had the first week and a half, but it's better than 11:15 or 12:45. Hopefully they won't run behind either.

The radiation has finally taken 80% of her hair. Over the next few days, we are anticipating the rest will come out. It is not fun to spend hours picking up hairs off her clothes, the floor, her bed, the tub, jacket, etc. I really hope this is the first and only time I have to take my daughter's hair out. That, combined with the vincristine (chemotherapy) has taken a toll on her appetite, caused nausea, constipation, and generally not feeling too good. We've got her on a host of drugs daily, mirolax for constipation, zofran for nausea, and dexamethasone (steroid) for inflammation (brain) as well as appetite stimulant.

This week will also be a bit of a challenge, b/c I'm off the KY for 2 days for work on Tues-Weds. I'll leave at 6am on Tues, come back 7pm on Weds. It's a short trip but I'm nervous about leaving. I have a hard enough time leaving them for business before this whole mess started, I'll be on edge the whole time I'm away. We moved our clinic visit downtown to Thurs, as a result, when she'll get her weekly vincristine treatment.

Otherwise, we are plugging away. Every day is a challenge to get Sophie to eat. We've tried everything. Her favorites, making shakes with PediaSure, bribing her with any fast food she wants, candy, snacks. It's gotten better since Sat, but she is nowhere near eating enough for her body to be strengthened to fight the cancer and get through the treatments. Worse case scenario is that she has to get a feeding tube, which we want to avoid.

Selah is still keeping our spirits up every day. She is growing more and more every day, saying new things, doing funny things. She is very kind to her sister, always sharing her toys, and getting her something if she asks for it. She loves her big sister. She's been stuck in the house most of the time, as Jeannie and Soph head to radiation and/or rehab, but she has not complained at all and has been our happy baby.

Thanks for all of your prayers. Many of you have also asked how you can help. We have the meal train setup for meals (either homemade or delivered) and financial donations. Outside of that, there's not much else that we can think of. The girls have lots of & books. More than anything, your faith and encouragement will always help us.

Friday, January 18, 2013

Hair loss

Into our 14th day of radiation treatment, hair loss has started, and falling out at a rapid pace. Hair on her pillow in the morning, in the bath, on her clothes, on the floor. We are just quietly picking it up and throwing it away. Sophie does not seem to be paying any attention, besides getting annoyed when a lot of hair falls on her iPad. She still has some hair, maybe she will have a reaction when it's all gone. We also need to prepare Selah, somehow, some way. By Sunday or Monday, it should be all out.

Hair loss is an interesting thing. People try to reassure us by saying that it will grow back. Though this is a true statement, it does not make us feel any better. Maybe I'm stating the obvious, but the hair loss, perhaps one of the most minor consequences of this brain cancer, is the most visible, sobering sign that cancer is/will be a part of our lives forever. I mean, we've been thru a 10+ hr surgery to remove the tumor, Soph was intubated, stuck in a hospital for 18 days, can't walk or run like she used to, lost a lot of weight, but the hair loss is like a slap in the face from cancer, reminding us that it's here.

I just look at her and can't help but to remember when she was a baby and was nursing, how she would grab Jeannie's hair as she nursed. Then as she grew bigger, how she would start to run her fingers thru her own hair and that's when we knew she was tired. It's not just hair.

Hats, wigs, who knows? Should we go to church? How will other kids react? How will Soph feel? How will her sister react? So many questions. It's like watching a train approach to hit you, but you can't get out of the way. You know you won't die, but you can't control the fact that it's going to hit you and it's going to hurt like hell. Sorry for the extreme analogy.

Today was a tough day. The weekend will be a challenge as well.

Thursday, January 17, 2013

Journey of arrivals

I recently read a devotional from A Slice of Infinity (Ravi Zacharias International Ministries' daily devotional), that quoted this from E.B. White:
"As for me, I enjoy living among pedestrians who have an instinctive and habitual realization that there is more to a journey than the mere fact of arrival."
The whole devotional really struck me, b/c I could totally relate with the writer. We hear so many times that we should enjoy the ride, and especially in the Christian perspective, that the aim is not that we are saved, but our whole earthly life is a journey of sanctification.

But I think about our struggles right now, and it hits home, when the writer references the story of the Chilean miners, "For them, the journey was indeed astounding, but the arrival was everything."

Our journey of 5:45am wake-up calls Mon-Fri, struggles of getting Soph to eat, inevitable challenges with sickness, hair loss, chemotherapy down the road, etc, seem never-ending. Though I don't know what our "arrival" is, maybe end of treatment? I don't think we'll ever feel like we've "arrived," not with tri-monthly MRIs for 5 years, then yearly for the rest of her life, hoping/praying we get clear MRIs.

So then I come back full circle to the White quote, and maybe there is something more to our journey besides reaching the end. It is really hard to see during these difficult days, but then I read 1 Peter 4:12-13.
"Dear friends, do not be surprised at the fiery ordeal that has come on to test you, as though something strange were happening to you. But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed."
A few Sundays ago, Dr. Steve preached at our church and also shared similar words, that for Christians, there is no such thing as pointless suffering. Though we've been far from God in recent years, I do feel strongly that He has a purpose, even to this, the most inexplicable situation we could imagine.

All this to say, that though I'm aching for the last day of radiation (Feb 12, we think), the last maintenance cycle of chemo (probably early 2014), I'm pretty sure that God intends something for us throughout this difficult time, and it's up to us to find God in the journey, not just at the finish line. Please pray for us that we do this.

Tuesday, January 15, 2013

Week 3 begins

 We are in week 3 of proton radiation treatment, up to 11 sessions now, (counting today, 1/15). 11 out of 31. So we are 1/3 of the way to the end of radiation. Soph has been a trooper, waking up at 6am, Mon-Fri. This week is a bit different in terms of timing, with Tues appt being at 8am, and Fri at 11:15. That Fri will be hard b/c she will not be able to eat until after her appt, and given that we've had a tough time getting her to eat, telling her no if she asks for food will be tough.

Otherwise, we are on our schedule of Tuesdays downtown for clinic visits where she gets her chemotherapy drug, vincristine, and gets checked out by the neuro-oncologists. With the commuting, waiting, it ends up being a pretty full day. Today we are here later b/c radiation started later and she is getting a pneumonia vaccine. Will probably run into rush hour traffic on the way home.Ugh.

Sophie will also get a brace this week, on Thursday. It will help her from hyperextending her knee, and in general, will help correct her walking.

The weekend for Selah and I was nice, in Washington DC for my sister Cindy's wedding. It was bittersweet though, as we felt only half there, leaving behind Sophie & Jeannie back in Chicago. Thank goodness for facetime! Thankfully we also had my parents travel with us to help with extra hands to/from DC. Selah was the flower girl, and got a bit nervous walking down the aisle with lots of people smiling/staring at her. She insisted grandma walk down with her until she got closer to me. But she did great over the weekend, little complaining, and had a fun time with everyone. I was apologizing to Cindy and brother-in-law Bob for stealing their thunder, but Bob countered with, "she actually enhanced the thunder." Here are some pics from the wedding below:

We made it to DC! Napped on the plane to boot!
Hanging out in the courtyard of the National Portrait Gallery.
Walking around DC with Cindy gomo
The many faces of Selah Cho
Supervising gift bag production. Future supply chain professional!
The newlyweds at the rehearsal

Calvary Baptist Church
Selah ready for the wedding!
The bride before the ceremony.
My 2 lovely sisters!
Making sure Uncle BooBoo knows what he's getting into!
Getting married!

Didn't get to eat the cake b/c Selah had to go to bed, but it looked delicious!
Pic with the newlyweds!

Tuesday, January 8, 2013

Prayer requests-Jeannie

Day 6: Yesterday was probably her best day yet. She had an appetite and ate a lot for lunch and dinner. No complaints of stomachaches or pain. She's walking more on her own and trying to catch Selah around the house. Selah and Sophie's laughter calms me for a few moments and makes me think we can be normal.

Day 7: At the proton therapy center today and it hits me at random times that our family life now is about this cancer. It really is surreal. To keep my sanity at times, I hold Selah each day and snuggle with her. She misses me and I feel her needing me.

Prayer requests: Today is Sophie's first chemo treatment downtown. We have our clinic visits downtown at Lurie Children's Hospital every Tuesday right after the proton therapy. It's a long day with long drives so please pray for strength. I am nervous about the effects of the chemo (vincristine) and don't know what to expect. Jason and Selah are leaving Thursday for my sister-in-law's wedding. Sophie and I are disappointed that we're not able to go especially after going through make up trials with her over Thanksgiving. Plus, Sophie was supposed to be a flower girl with Selah. It's sad not only because we'll miss the weekend with family and seeing Cindy in her dress marry Uncle Boo Boo, but because Sophie won't have that memory later on. And this girl remembers everything. She has a better memory than Jason and me.

Please pray for Cindy and Bob's wedding, safe travels for Jason and Selah, and a calm heart for Sophie, that she won't feel left out. But we have planned a visit to her school on Friday so she's excited to see her friends and teachers. So pray that she will have a fun day with her friends and she won't notice any limitations. Sophie has lost 2.5 pounds since the initial operation in December. Her weight now is 35.5 pounds and she is all skin and bones. This is a huge concern as we still are not even halfway through the radiation and chemo hasn't started.

Please, please pray that she will eat more, not have any stomachaches, and that she'll even have minimal side effects from all the treatments. Her hair is going to fall out soon and I've spoken to her about it a few times, but until it actually happens, I don't know how she will react. She uses her hair as a soothie so pray that we will figure out a different way to soothe her. I need ideas on how to do this and am very nervous about her reaction.

Lastly, please pray for Jason and me. We've read blogs about other families going through cancer and they've recommended taking care of your marriage. We are so opposite in our communication skills, but so far it's been alright. We don't only need time to talk and catch up but we need to love each other as our first response instead of becoming impatient.

Thank you for all your prayers. We covet them and it helps during the long days. All the texts, emails, messages strengthen us and remind us we are not alone or forgotten. We love our little girl but know God loves her even more than we do.

First week- Jeannie

Day 1: Worst part was dropping her off in the room and kissing her goodbye. The nurse said it would get easier, but I didn't believe her. What part gets easier? Seeing Sophie lose weight and be so skinny I can feel her vertebrae? Having to carry her around because her walking has become so unstable? The endless noisy waiting rooms for ophthalmology, hearing, oncology, neurology, rehab appointments? I expected to be in the waiting room for 3-4 hours at least, but surprisingly the first day lasted only 2.5 hours. She usually comes out of anesthesia pretty agitated but not this day. She was very tired all day and after an hour of rehab, we stayed home. A family friend brought dinner over and Sophie asked about her daughters and wanted to know silly details about them. Then, about 2 hours later at 6 PM, she started exhibiting symptoms similar to the time right before we found about the tumor in December. Her head tilted all the way to the right, eyes not able to focus, complaints of headache and neck ache. Then she wasn't responding to questions so we took her to the ER. Thankfully, the CT scan and bloodwork all came back clear. I think the whole day just hit her at dinnertime and the exhaustion took over.

Day 2: An early day again and I don't sleep much anymore. I keep waking up through the night because I think that I'm going to oversleep and miss Sophie's radiation appointment. She surprisingly wakes up easily but always remarks that it's not ok with her to wake up when it's still nighttime. "I don't like that, Umma." 

Day 3: Her mood in the morning has been alright. She doesn't fuss too much and always picks a pink striped cotton dress to wear with her soft pink leggings to match her Hello Kitty socks. After treatment, Sophie overheard that Selah had a play date and wanted to go as well. It was nerve wracking for me because I didn't know if she could keep up with her friend and I wanted to avoid any and all meltdowns. Thankfully, being around other kids at this play place invigorated her and she wanted to walk on her own and played for a good hour sliding, climbing, and playing with her friend Sean. Selah loved seeing her sister laughing and having fun. Thanks, Jane and Sean!! We had an opthamology appointment in the afternoon and her left eye is only one line weaker on the eye chart than the right which accounts for the squinting. But thankfully no swelling in her eyes, as far as the doctor was able to tell. We love Wheaton Eye Clinic. Sophie's been fairly easy going this whole time. I know she's exhausted but will never take a nap. We've been putting her down earlier and she knocks out for the night.

Day 4: No one should wake up this early on a Saturday, especially for radiation treatments. But she had her port deaccessed today so she was in a better mood. Sunday: We've gone to church the past couple weeks and Sophie loves seeing her friends and familiar faces. We've missed worshipping God with our church family.

Saturday, January 5, 2013

Taking a deep breath

We finished our first week of radiation therapy today. 31 total treatments, 4 this past week, 27 more to go. Our calculations are that we finish on Feb 12. Seems like an eternity away.

We wake up at 5:45, I go off to work on Mon/Weds/Thurs, Jeannie/Sophie head to Procure. They are usually there until around 9-9:30, then head back home for a few hours, before heading back out for rehab in the afternoons. Unless it's Tues, when we head downtown right after Procure for our clinic visits, where she will start to receive chemotherapy next week.

It's been a taxing week. We had a bit of a scare that first day, but Thurs/Fri/Sat were better. I can't believe that Sophie can get thru the day when waking up at 5:45, and long days of treatment without taking a nap. She just needs the iPad, and she's good. She's not eating a ton, but we are really trying our hardest to get her to eat. We've been frequenting Jamba Juice to try to get some calories in her. Despite the lack of food, she is an incredibly strong girl. I am amazed every day.

We have a day off tomorrow, before 5 days of radiation next week. Selah and I will also be off to Washington, DC on Thursday for my sister's wedding. It'll be bittersweet leaving Jeannie/Sophie here though. If anyone can give me, my parents, and Selah a ride on Thurs around 11:30am to ORD, and/or pick us up on Sunday at 6:30pm, it would be much appreciated.

Otherwise, we're plugging ahead. I wake up each day and cannot believe that my 4.5yo daughter has brain cancer. It's really, really unbelievable.

People have been asking how to help. I'll point you to our meal train which has been great. You will have to sign up for an account, for privacy concerns. People have been bringing us food or having it delivered almost every day, and it's been a great help. It's nice to not have to worry about cooking or getting food. And with my mom here, she is taking care of cleaning up, watching Selah during the day. It's also really great to connect with people when they come drop off food. Sophie gets energized when kids come by. It's almost equivalent to therapy in my mind, b/c she tries to walk around more and play with the kids.

Please also pray about Sophie's loss of hair. We think it will start next week. Jeannie has been explaining to her, but we are not sure how she will react. Her hair is sort of her security. Ever since she was a baby, she would run her fingers thru mom's hair, and hers. Not sure how she'll be when it's not there. This will be sad for us. I will shave my head to try to make it light and goofy for her, but it will be hard.

Thursday, January 3, 2013

1 down, 29 more to go

So we barely scraped through day 1 of radiation treatment, Jason going back to work, rehab.

Most of the day went by ok. Soph was in by 6:30, out of proton by 9:45. Back home for a few hours, then off to rehab for another hour or so. She was fine for the rest of the afternoon, but then around 5:30, she started complaining of head hurts, neck hurts, dizziness, double vision, and wouldn't eat anything. She was on the couch for an hour or so while we made calls, debating whether or not to take her in. I was leaning towards putting her to bed since she'd be back at proton 6:30 the next morning, and Lurie by 10:30.

The clincher was that it seemed that all of her symptoms were the same as that Sat, Dec 1 night when we rushed her to the ER to find out about the cancer. Lurie oncologists recommended we get a CT scan, so we decided to go to CDH in hopes that they could treat her and hopefully avoid a trip downtown.

Took her to CDH where they hooked her up to an IV, took blood, and got a CT scan. Halfway thru the 3 hrs there, she seemed to feel better, looked better, and we found out that the scan was clear, bloodwork normal. It took forever to get discharged, but we finally got home at 11:15pm.

Unfortunately, she still had to wake up at 6am to get to Procure by 6:30. Doctor thinks it might be some irritation in the area of the brain where she got radiation. Jeannie and Sophie will be off to Lurie right after proton therapy for a visit with the neuro-oncologist where we'll finalize the overall treatment plan. Soph will also have to get a hearing test today.

It will be another long day. Please pray for strength for both of them and minimal irritation/side effects from the radiation.

On a lighter note, it appears our Selah is potty-trained! She's been peeing regularly in the potty. After I took her last night, she proudly proclaimed, "Appa, I go potty. I big girl now. I potty training."