Uncategorized – Page 17 – CHASE AWAY CANCER

What To Expect When You’re Expecting To Read “Chase Away Cancer”

For the last several weeks, I’ve been getting feedback both on the idea of Chase Away Cancer and now on the finished book itself. Everyone is being so gracious, but there have also been some threads of question and/or doubt woven in that I’d very much like to put to rest.

So, what should you expect when you’re expecting to read this book? Here are the three most common points of feedback that I hear. I hope with all my heart that the answers put your mind at ease and prepare you to join us on the journey.

1. “Well, I probably won’t read the book because I’ve followed along with your blog the whole time, so I pretty much know the story anyway.”

Yes…and super, really NO.

Yes, it’s true that if you’ve followed the blog or Facebook page, you have a good idea of where the story goes, however, this book was written from scratch (almost two whole times!) and while it holds some similarities (lessons learned, etc), this is the straight-up, dialogue-filled story of Chase’s diagnosis and treatment. I’m not kidding, you guys. You will be IN THE ROOMS with Bob and I as we make decisions on his treatment and life.

This is unprecedented openness for us — and it is so much so that over a dozen medical staff had to sign off on conversations and use of their real names. It’s so different from the blog in some ways that my own parents (with whom we lived during Chase’s treatment) read the book and immediately called us to say “Wow, we knew, but at the same time, we didn’t know…”

So, to sum up, put all ideas of a yawn fest aside. I kept you faithful story-followers and blog readers in mind when I wrote the manuscript – there will be plenty to learn, and dare I say, even …enjoy?

2. “I really want to support you and everything, but I’m really scared to read a book about a child who gets cancer.”

I would be too.

I can honestly say that if I hadn’t written this book, and somebody told me I should read it, I would probably approach it with some trepidation.

There will be some chapters that you’re going to want to have the box of tissues close, but there are other chapters that will make you laugh out-right and you’ll be shocked that you just giggled over a book with the word “cancer” in it. This is life with Chase. You laugh. You cry. And sometimes, you do both together.

My amazing editor and I (along with a gifted and highly skilled team) worked incredibly hard to make this book “breathable” – ie: you will feel what we felt in the sadness, but you’ll also feel our joy and you’ll find times to “breathe” and take it in as you read. In other words, you’ll get all the feels, but it’s unlikely to blindside you. This was written for joy and grace, not a shock value.

3. “But I don’t have a child with cancer.”

That’s the best news I’ve heard all day!

While it’s true that this book will probably speak most directly to parents of children with cancer, each chapter ends with something God taught us on the journey and the heart of the entire book is that LIFE IS MESSY, but GOD IS FAITHFUL.

So yes, your life might not include cancer, but don’t underestimate how the story might touch you, encourage you, or give you far greater understanding into the life of a friend who might be hurting.

Does that sound proud? I don’t mean it to be — but you guys, throughout this journey, I’ve been amazed that some of the greatest, most touching stories I’ve ever heard about what’s written on this blog came from people who were encouraged and given hope to carry on because they saw their infertility, their disease, their caregiving, their financial difficulties, their selling a house, etc, etc… (seriously, I could go on and on) through the same eyes as I saw a trial of cancer. Yes, my difficulties might look different than yours, but stress is stress and in that, there is a really incredibly universality in Chase’s story.

So, won’t you join us?

*Have other questions or concerns? Please let me know! I’d love to answer them.*

Moment by moment.

In The Market With Janet Parshall

UPDATE, May 3, 2016 — For some reason, even though I wrote this post yesterday morning, several people didn’t get the news in their inbox until a day later. If you fall under that category, I’m so sorry! But, don’t despair… I have the link to the recording here. You can follow the link to listen to my talk with Janet or to pass it on to friends. You guys, it was truly such a blessed time!

MbM

Oh my dear friends, I’m so honored (and slightly terrified) to tell you that I’m going to be hanging out on In the Market with Janet Parshall later today to talk about Chase Away Cancer – This is EPIC.
I honestly don’t know whether you should pray for me to speak an intelligible language or pray for Janet since she’s the one who has to talk to me. Hey, tell you what…just PRAY.

If you’re in the Chicago area, you’ll find me on Moody Radio (90.1) at 4:00PM (CST), and if that isn’t your station/location, you can follow the link here to find a station near you.

And just about the second that I’m ready to freak out and fall down over the “bigness” of this little talk (I’m a mom in sweatpants, remember?), I overheard this conversation amongst my children this morning:

“Karsten, you can’t be crazy today because mom has to talk to a lot of people on TV. Except it’s the kind of TV you listen to, so stop messing around because you’re stressing her out. And then later, we will watch her with our ears.”

Oh, what a great reality moment. I’m feeling like all my kids need to stay in school for now…and also like there aren’t any college scholarships in our immediate future.

But seriously, come join me this afternoon (and don’t forget to watch with your ears) as we talk Chase Away Cancer and the faithfulness of God in all things.

Moment by moment.

“May the words of my mouth and the meditation of my heart be pleasing to you, O Lord, my rock and my redeemer.” Psalm 19:14

Waiting For The Ship

I can tell you many things, but there is one thing I absolutely cannot even begin to describe.

There is a road I’ve thought I might see from a distance just a few times, but it is one I’ve never yet been asked to walk. However, one of the dear “cancer mama sisters of my heart”, Christina – she was asked to walk this road as her darling Noah went from her arms into Jesus’ on September 27, 2015 at 5:46PM. Just over six months ago now, and if you were to ask her, she might be able to tell you the days and maybe even the hours that have passed too. For Noah was just three when he stopped suffering and his family started anew.

Throughout this time, I have so admired Christina’s strength and faith and so when she opened up her hurting heart just recently, I asked her permission to share her gorgeous, raw words with you. Take a minute and hold her up in prayer as you hold up her honest, heartbroken words, and please, oh, please, let them change you as we live and move among the grieving.

Time sucks.

I am struggling with the fact that as it passes I am moving farther from the time I last held my son. Last held his hand, kissed his cheek, felt him breathe, fed him, heard his voice, and the list goes on. I know with each day that passes I am technically getting closer to the time we are reunited. But being in this middle is hard.
It kind of feels like I am swimming away from an island where life wasn’t perfect but was good, towards a ship that I cannot see but know will be coming to rescue me. The island is moving farther away as I keep swimming forward, but I don’t know when I’ll reach the ship. And in the mean time I’m struggling just to keep my head above water. I know how to swim. And I know I’ll be rescued. But this period of time in the middle is so hard.

[stock photo credit: Pexels]

I’ve been given little rafts along the way, breaks in the pain, but eventually have to keep swimming. I’m trying to see the blessings God is providing. And there are many. Some days I see them more clearly. And other days it gets clouded. As life moves forward I have moments of feeling so alone. Around here it’s not commonplace to have a child die. We don’t see it happen on a regular basis in our neighborhoods, schools, groups of friends… I know it is in many other parts of the world. But our friends, family, coworkers, and classmates get to look forward to celebrating their kids/friends/siblings next birthday. Or look forward to summer with bike rides, pool passes, vacations. We do too, but with one member of our family missing. It’s raw, and devastatingly hard. Winter has been a way to hide from a lot of what I’m scared to face. The sandbox that’s not being played in, Noahs truck sitting in the garage, his bike that he never really got the chance to ride, other little brothers running around outside with their big sisters.

Tonight has been a lot of hard. Really since we came to the year of diagnosis it’s been hard. A lot of emotion and grief overflows. Life is moving forward and I feel like I’m ready for another raft to be thrown. In the beginning there are many, and now I feel like they’re farther apart. Mostly because I’m getting better at swimming. But when I tire it comes out of nowhere and I struggle.

Noah feels farther away, I don’t see a ship, and tonight I’m tired of trying to see the positive in everything. So I’m going to allow myself to feel, to be a little angry, and pray for some relief.

Moment by moment.

Stacks Of Paper And Grace

A glimpse into the recent daily life . . . I have the honor of working on something extra special alongside the amazing Tyndale House Publishers.

Stay tuned: you won’t want to miss what comes out of this stack of papers.

~ MbM ~

Of Breathing, Growing, And Being An Ambassador

Sometimes Chase remembers that things change as he grows and sometimes he doesn’t. The last time he had a continuous EEG (the process of monitoring the working of his brain for hours on end), he was newly 4, six months off chemo, and his heart and body were both still deeply hospital weary. He had to be wrapped and held and he screamed the whole time as the wires and goo covered his head, so when I told him on Monday that the time was coming again, he slumped down on the couch next to me. “Mom, stop talking. Please don’t say anything else. I need to breathe. No more talking… I need to breathe in and breathe out right now.” And I sat half laughing and half broken that he’s 5 and yet he’s 107 for all of his experience.

The awkward "can't-climb-into-the-hospital-bed-with-you" snuggle — The awkward “can’t-climb-into-the-hospital-bed-with-you” snuggle

In preparation, we wandered through Target last night and found a new movie and some popcorn because seizures can happen when you go from sleeping to waking and so he had to be able to sleep during the test, and as the kids sat on the old, blue leather couches and munched around giggles at WALL-E, there was another July EEG night on my heart. One when Darcy and Aidan were still too young to stay up terribly late and Bob and I took turns napping and walking a two-year-old Chase around the block and at 10:30, when I simply couldn’t stand anymore Thomas the Tank Engine and decided to put him to bed, he lost his balance and fell, and my stomach turned, but many things can cause a fall and so we went to bed anyway…never knowing that it was less than 48 hours til we’d sleep in an ICU under the shadow of imminent surgery and tragic diagnosis. I always think of that night come each July and it was my turn to breathe in and breathe out and remember that by the grace of God, that night wasn’t a minute past, but nearly three years ago.

This movie night lasted until 11:00 and the EEG day started at 5:00 and in moments like this, grace and coffee are my best friends. By a mile down the road, it was time to find the nearest bathroom just because that’s what happens with 5-year-olds, and as we sat on the Eisenhower in the long lines of traffic, as soon as he saw the top of the Willis Tower, Chase pulled out his iPad and turned on 10,000 Reasons, because sighting the tower means he’s almost there. Three years have nearly passed and this is still how he prepares for a hospital day.

Within minutes, we were there in the familiar rooms again and then came the moment he knew things had changed for he sat completely still while they put 21 brightly colored electrodes all over his skull and the only time he ever got cross was when I tried to make him laugh. And I got to hold his hand and not hold him still.

Chase never relinquishes a fight and it took him until 5 hours into the test to fall asleep and that was 5…long…hours… of sitting in a bed with virtually no radius of movement unless a bathroom was absolutely necessary.

When the test was done, having mercifully lasted only 6.5 hours, he pulled some St. Baldrick’s brochures out of his pack. They had his picture inside, his and Dr. Lulla’s, and to anyone who would stop, he gave a brochure and said “I’m an ambassador.” And even though he doesn’t always give Dr. Lulla the time of day during clinic visits, to any and all who would listen, he would explain and point, saying “This is Dr. Lulla and he’s my favorite doctor in the whole world.” He even stopped a security guard and somehow managed to encourage him to shave his head next year, and it was a precious moment of conversation and meeting, because if I’ve said it once, I’ve said it here a dozen times…this is how Chase rolls. And I wish you could have seen the tall security guard fold down and give tiny Chase a big hug. Those are the good moments to breathe in.

Chase and his “favorite doctor in the whole world”

And now Chase has learned that things change as he grows and what was hard a year ago wasn’t very hard at all anymore, though the sitting still and his mom trying to make him laugh at inopportune moments will probably remain trials for many years to come.

For now we await results. No matter what comes of this, we’ll breathe in, breathe out, and take it…