I Miss Her

I dream about her. Her beautiful hair flying in all directions as she runs. Her bright smile beaming at me and her sister. Her legs carrying her as fast as they allow. There's no shakiness, weakness, nor uncertainty. She's just free.

I miss her. I miss her shouting, "Mommy, higher!" on the swings and running circles around me. I miss her volunteering to get things with ease. I miss hugging her without fear of hurting her. I miss her pulling Selah in the wagon. I miss how busy she was all day long. I miss her running ahead and waiting for me. I long for her contagious giggles because she knows she can't be caught by anyone. This confidence and fearlessness I miss. These days, I can't get over the fact that it'll be a long time before she is back to this girl. Every playground is a reminder of what was, as are kids running at church and school and the grocery store and the library and the mall and...

It's become a tradition for Big S and Little S to sing and dance for me on a self-made stage at every playground we visited. I must have the same song recorded a dozen times at different places with different outfits. My girl is so happy and carefree in these videos. What I wouldn't give to have that back. I know I can't trade places with her, but I would. I would give my arms, legs, eyes, anything to have my daughter be free of this cancer. As a parent, some basic principles are that you want your kids to be healthy, happy, normal. I want her to be healthy, but now we have to worry for the rest of her life whether the cancer will come back and what side effects will surface from the treatments--and there will be many. Is she happy? I don't know. She's become more emotional and easily upset and frustrated. Normal? I don't even have to see people staring at her, I feel it. Everywhere we go. I just want to scream she has cancer, she is NOT a freak. 

From the beginning, I enforced a rule that no one is allowed to cry in front of Sophie. She is not to think that she did something wrong and I don't want her upset seeing others cry. But I've broken that rule a couple times now and it's harder not to do so. Each time she lays her hand on me and I know she understands why I'm crying. Last week, I kept telling her that I'm so sorry she has to go through this, I'm sorry that she has all these owwies in her body as I rocked her in my lap. But she's getting medicine to get rid of everything and we are praying that she feels better soon. I tell her everyone is praying for her and I list the people by name. Because that helps me too. To know we are not alone in this fight and that people do care and love our family.

Jason and I know we have to adjust our expectations for what kind of life Sophie will have in the future. Learning disabilities, hearing loss, attention issues, endocrine issues, obesity, special education classes, etc. are all real possibilities for her after this year is over. There's something like 27 "later effects" as well. People keep telling me that it's our "new normal." I just want to say, I love Oprah, but this phrase is such a disservice to families who suffer. This is definitely a new situation and direction that we have to go through, but never is it going to be normal. It's not normal that a 4 year old girl has cancer and has to undergo radiation and chemo treatments. It's not normal that the same girl loses weight and doesn't want to eat. And it's not normal that she loses her hair in 2 days and then has to hear comments about it from others. She's no longer running and walking or chasing her sister like before. Again, the norm is none of those things.

A friend emailed a parent's job description recently based on a book called Grace-Based Parenting. According to the author, it's not the parent's job just to clothe, nurture a child, or make them happy, secure, successful, athletic, popular, or the like. But for those parents who love the Lord, it's to teach them how to love Jesus and to love and help people. I agree with these points. Sophie's character, her true worth, will not come from what this cancer is doing to her body. It will come from what Jesus says--He is with her, she is made in His image, He will never leave her or forsake her, He protects her, He loves her, nothing can separate her from His love. Nothing.

Alternate treatments

One hot topic these days for us is alternate treatments. Everyone from family, friends, other acquaintances are giving us lots of different ideas on homeopathic methods, supplements, and whatever else is out there they have heard from friends, friends of friends, infomercials, internet articles, etc.

Our current treatment plan, ACNS0331, is one of the standard treatments in the US to treat standard-risk medulloblastoma, with a combination of surgery, radiation therapy & chemotherapy drugs. We also know that both radiation & chemotherapy has long-term, significant side effects, that are very difficult to think about. I'm stating the obvious here, but cancer isn't one of those ailments that one can "heal" from or even cure. Sophie is undergoing these terrible treatments, (it's still gets us that the warnings for the chemo drugs sound so dire, so hazardous, yet it's going into her little body) to kill the cancer cells, but the effects of these things are so deflating to think about. I so wish there was another way.

 There are so many different things out there that people swear by. CoQ10 (my dad), Vitamin D, antineoplastons (Burzynski), organic food, vegan, juicing. ok fine, so some things are legit, but part of me can't help but to think that some of these things are just a product of people overthinking, and/or opportunistic entrepreneurs preying on people's fears.

It's tough, of course we want to do the absolute best for Sophie, and reduce toxicity as much as possible. But we don't have the energy or time to explore every single option or treatment out there either. This is why we more or less trust our doctors. It's a balance, we can't always just take their word for it, and we need to be Sophie's strongest advocates. Also we know that people's suggestions most always come from genuine concern and good intentions. I read a lot about other parents of kids with medulloblastoma and they seem to spend hours on hours doing research into supplements, causes, cures, ideas, everything. Sometimes I feel bad b/c I don't have the desire to do all of that, perhaps due to laziness, partially due to the fact that I don't want to know more about this terrible disease than what I already know. Maybe we put too much faith in our doctors. Maybe there will be a time in the future when I dig deep into what's out there, and aggressively seek information and/or changes to Sophie's standard treatment.

Back to some of these alternatives...my thought with most of these is that if these alternate treatments were that effective, wouldn't they be more mainstream? And wouldn't the effectiveness be proven in randomized, placebo-controlled, double-blind, clinical trials? Sure it seems like the time to bring a drug or treatment to market is years, not months, and there are many hurdles. But isn't that the way it should be? If we don't have a cure for cancer, why would we want to mess with treatments or drugs that are unproven? For sure, I would not want to "experiment" with any drugs for Sophie, even if there's a promise that it might reduce toxicity or pain. A few anecdotal stories on how this or that worked wonders for someone is not enough for me to believe it's a cancer killer.

So those legit things like organic food, juicing are ideas that cannot hurt, but other supplements or drugs are a bit more unknown, and most likely things that we will stay away from.

Your opinions are always welcome. We know everyone has good intentions in all of this. Please understand that it can be quite overwhelming for us, and hopefully this will give you a peek into our thoughts. Please continue to email us, message us, tell us what you think.

Exhaling

So we are entering our period of "rest." No treatment or hospital visits until March, 3/11 to be exact.

Sophie is very happy to be "tubey"-free. She's still not eating a ton, but she is eating. We are trying to fatten her up before chemo starts. Her constipation is minimal these days, and she is generally in good spirits, except the occasional (frequent) sister-on-sister battles that occur over the iPad, puzzle, books, etc.

We don't have a whole lot planned or going on until early March when chemo starts. Just want to take it easy, be normal, and enjoy our time as a family. Here are our next few milestones/events:

• Wine Tasting/Food Pairing on 2/23: Still have about 30 spots remaining for the wine tasting event for this Saturday. It will be in the city, Creative Studio Space, 2939 W. Belmont. There is a facebook event page, but you will need to purchase a ticket thru this wepay link to confirm your attendance. It will be a fun outing with catered food, professional wine tasting, photobooth, and some info on Sophie and pediatric brain tumors. Sophie will not be there, but we'll have pictures, video, and some extended family there to represent us. If you cannot make it, there is also a spot for donations thru the wepay link. Use the occasion as a date night!
• Family photo session on 2/23: The Gold Hope Project is a non-profit that provides portrait sessions for pediatric cancer patients and their families. Not quite sure how the session will go, but we're going to give it a shot, and hopefully capture some good photos.
• MRI on 3/11: Sophie will get an MRI on Mon, 3/11 to check her brain & spine. We are hoping for the NED (no evidence of disease) news. The biggest ongoing fear is that the cancer will come back. This first MRI post-radiation is a big deal to ensure that the cancer has not returned, especially after the intense radiation treatment.
• Course 1 of chemo on 3/12-13: We'll head downtown to be admitted for the 1.5 day stay at Lurie. Soph will get a cocktail of chemo drugs (lomustin, cisplatin, vincristine).

We are nervous for chemo. We survived radiation, but are afraid of the side effects of chemo and the toll it will take on Sophie. We know appetite will be suppressed, and she will probably not be in very good moods, but we are hoping for the best, as always.

Otherwise, we are trying to move forward. I keep thinking of the Kubler-Ross model, or the 5 stages of grief. I think I am still in denial, and Jeannie might be more in anger. Of course we have experienced the range of emotions, and every day is different in and of themselves. One day at a time is not just a cliche for us, but the only way.

Please continue to pray for Sophie, for us. For peace, hope, and for the cancer to never come back. 

We appreciate all of your emails, messages, facebook comments, texts, meals (both home-cooked and delivered), packages, cards, and financial help. We still have the meal train & donation site up, if you would like to help us in that way.

A good day

Today was a good day. One of the few really good days from the past 2.5 months. Not all of you are on facebook, and may not see as many pics, so here are a few from today. Feel free to find us on facebook and friend us, for more frequent updates.

Family photo with the cow at CFA.

Dear friends who have prayed for us, fed us, kept us upright. Thank you.

Girls having fun. So nice to see.

Selah having fun with Uncle Peter.

Soph showing some love to the CFA cow.

Coming out of her treatment session to balloons, cameras, lots of people!

More friends coming to support Soph. Thank you for loving our family.

from Target! Thanks Sam! You are the best!

Soph and her big girl friend Zoe!

Tickling her little sister.

Sign that Zoe and Jordan made. Thank you, guys.

Sophie's sticker chart. 31 stickers! Can't believe we got thru this. The chart seemed so daunting in the beginning.

Next to Sophie's handprint. All the kids put their handprint on the wall when they finish treatment.

Taking the opportunity to showcase Bel products!

Last radiation treatment eve

On the eve of our last radiation treatment at Procure, I have a few thoughts:

• Sophie is so very excited. I have not seen this excitement in a while. It makes us feel good.
• Other families who are the same brain cancer journey we are on share stories of how they "miss" the family at a treatment center or hospital. We are not like those people. Don't get me wrong, we very much appreciate the nurses, doctors, staff at the hospital, Procure, Marianjoy, everywhere that we've been in the past 2 months. But we strongly dislike the place. It's a super nice building, new, shiny, but we hate the place. We strongly dislike the fact that it beams harmful radiation onto Sophie. I know radiation/chemo is the standard treatment for cancer, and if there were a better way, we'd be doing it. But we strongly dislike that place. We also strongly dislike the CDH ER. Yes, they help people, but our main memory associated with that place is from Dec 1, 2012 when we found out that there was a 5cm brain tumor in Sophie. We will miss some of the people we have encountered, but have a strong dislike for the places.
• If you are not a radiation oncologist or anesthesiologist, you should go back to school and become one. I don't know all the details of course, but it sure seems like a lucrative profession. Each time Sophie goes, they bill $2000 for the anesthesia, and another combined $1500 for the radiation. Of course, our insurance covers a bulk of that, but that's a lot of money. Granted, it is a very specialized job, and it has to be impossibly difficult, especially with the deep emotions of patients/families, but it seems like a very comfortable gig from a financial perspective.
• Jeannie has mentioned a few times that though the 30 treatments at Procure seemed to take an eternity, it did give structure to the days and weeks. Not sure what it's going to be like post-radiation, but we will have to figure out another schedule and adjust accordingly. We will try to get Soph back to school once or twice a week, as her energy permits, and Jeannie will try to get back to her weekly mom's group for book study and fellowship. Hopefully that will give some routine back in lieu or Procure.

Lastly, if you are in the Chicago area, live in the city, or like to go into the city for fun, please attend the Wine Tasting/Food Pairing event on Sat, 2/23. It is being hosted by some friends, and it's more than just a fundraiser. A place/time to meet people, tasting of 4 wines run by a certified wine expert, with music, photobooth, and photographer. Come have fun, mingle, drink, support Soph, and learn a bit more about pediatric brain tumors.

Facebook event link

wepay RSVP for tickets and/or donations

1 week left!!!!

Our precious Sophie has 1 week left of radiation treatment!!! 5 more sessions, to be exact. Next Tuesday will be her last day!

We are planning a few different events as celebrations and/or fundraisers:

• After her last radiation treatment, we'll be heading to the Wheaton Chick-fil-a for a celebration lunch. We're primarily targeting Sophie's schoolmates, church classmates, and other small people so Sophie can share a meal with her friends. But if you are in the area, come on by and celebrate with us. We'll probably be there from 10:30ish to maybe 12:30?
• A "Spirit" Night at the Wheaton Chick-fil-a: sometime in late Feb, from 5pm-8pm. A portion of the proceeds will go towards Sophie's medical expenses.
• Wine tasting event: planning for Sat, 2/23, would be a professionally hosted wine tasting & food pairing event in the city with a focus on Sophie and pediatric brain tumor awareness. It's both a social event and a fundraising event. If you cannot make it, but would like to make a donation, you can click on the wepay link. The event is limited in size, so let me know if you'd like to come!

We also headed downtown today for our 5th clinic visit, and her 5th dose of vincristine. Here's what will happen after her radiation finishes next week.

• We have a 4 week break from any treatment, hospital visits, etc. She will still probably take miralax (for constipation), periactin (for appetite stimulant), and zofran (for nausea).
• We'll try to get her back in school. Not sure it will be 3 days/wk like before, but as much as she can tolerate.
• She'll still go to rehab when possible, 2-3x/wk.
• Post-radiation MRI will be in early March, hoping for NED! (no evidence of disease)
• Maintenance chemotherapy will start in early March. There will be 9 courses of chemo, either 6 weeks or 4 weeks apart. There will be 4 different chemo drugs given in different sequence.

Soph also maintained her weight from last week, which is good news too! Her doctors, Dr. Jason & Dr. Becca, are very, very pleased with her overall progress. They say she has improved in all facets of her recovery. She has made huge strides in her walking. She's much more stable and wants to run!

Thank you all for your prayers. We're still in the early stages of this journey, but one big milestone is coming up and we are looking forward to it!

2 months ago today.

We took Sophie to the ER at Central Dupage Hospital and at 10:45pm on Dec 1, our lives changed forever with the unbelievable diagnosis that she had a 5cm brain tumor.

Jeannie and I look at each other every night, and we cannot believe this is happening to our daughter. The past 2 months have been ..... words don't come. Life has gone on, of course, or should I say time has passed, but I still have not fully grasped this. My lovely little Sophie has brain cancer. How can this be possible? Why? How? Where did this come from? It still seems like a haze, a nightmare, but I come home every day and it's real. and it's sad.

But we must move forward. We have no other option. The future does scare me, but what can we do but hope and pray for mercy? Every night when I put Selah down for sleep, our prayer is for God to have mercy on us. The first few days of our nightmare in Dec, the Habakkuk 3:2 came to me. Back in college, we had a Bible memory verse contest, and if I recall correctly, I memorized a LOT of verses. Fast forward 15 years, and my Bible reading is few and far in between, but the Habakkuk verse is something that I feel that God is bringing to us.

"Lord, I have heard of your fame; I stand in awe of your deeds, Lord. Repeat them, in our day, in our time make them known; in wrath, remember mercy."

I hope that this will not just be my daily prayer, but it will be a call to return to full dependence on Him. There were past times in our lives where we were close to the heartbeat of God, when we knew of His fame, and stood in awe of His deeds, but in recent years it has been more of a self-sufficient attitude. I think the verse above is a call to return to those younger days of dependence, not on self, money, status, even doctors, but to acknowledge and embrace the sovereignty of God.

After today, 7 more radiation sessions. We need to confirm, but we think Tues, Feb 12 will be the last day of radiation. We are planning a sort of celebration that day for lunch at the Wheaton Chick-fil-a. If you are available, you are welcome to join us there. Specific details have not yet been set, but we hope Sophie's friends, schoolmates, can join us in celebrating the end of radiation. There may also be a larger event at CFA in the evening later in Feb, so we'll keep you posted on those details.