3.15.2015

Our After - The Bad, The Good...and The Ugly (3 years later)


Three years ago today, our ten-year old daughter was groggy, in pain, waking up from biopsy surgery on a mass in her lower right femur. We were squeezed like sardines into a tiny recovery room, attempting laughter and normalcy in the most abnormal of locations. The diagnosis was not yet official, so a sliver of hope remained. It was a Thursday. 

The few days prior to this moment had been terrifying. Not safe scary, like a roller-coaster or thrill ride where you are securely buckled in and know that the end will come quickly. Scary like when your chest tightens, you can't breathe and you feel as though your heart might explode. A vomit-inducing free fall with no end in sight. Persistent knee pain in our oldest child had led to an x-ray on a Sunday afternoon, with the expectation of finding a sports injury. But a frantic call from our pediatrician on Monday morning, left us longing for just a sprained knee. I remember exactly where I was and I will never forget the haunting tone in her voice. 

"I don't know how to tell you this...but I think Bailey has a bone tumor."

What I heard that morning, gave birth to a fear in my soul like I had never known. I suppose the phone call was the soft-launch of our after - though not a diagnosis, it is when the Googling began and the sleeping ended. This was a huge no-no of course, but we were desperate for information and we needed to understand the possibilities of what we were facing. Bailey had an MRI the next day, Tuesday, and based on that, the assumption was that it was a tumor of some kind. This brings us back to Thursday. Finally, after the moments crept by, the surgeon opened the door. It had been less than five days since the first x-ray and hint of trouble. He confirmed what our Web-MD-ing had suggested.

"It is cancer. Osteosarcoma." 

And thus was ushered in our official after. The moment in the life of our family by which everything will now be dated.  The almost year that Bailey spent in treatment was grueling. We had no idea that childhood cancer was that horrific. Hair loss, nausea, mouth sores, sleepless nights, missing of school and friends, surgeries, scans and the endless days in the hospital. To add another complicated layer of grief, we had exactly ten weeks from that day of diagnosis to decide how to remove the tumor. Bailey could keep her leg and give up all of the active things she loved, of she could sacrifice her leg and looking like everyone else, to remain active and athletic for the rest of her life. Agony. How does a parent make that choice? Pain and fear touched every moment.

When you finish treatment and survive, the closure is a bit uneventful. The last chemo flows, and you are on your way. There is no fanfare, no trumpet, no treatment in an effort to mitigate the damage done by the toxic cure. Off you go into the sunset. What should be a joyful moment is actually quite unsettling for most. You have been on the aggressive attack for so long and then...just done. Re-entry into your life feels quite precarious.

The Bad
We have spent the last couple of years learning to live in this after. It is not what we expected. For over two years, we have been existing in three-month increments...scan to scan, never knowing if the next one would be the one to send us back into that hell. There is no guarantee that the cancer will not return, so you wait and hope. It is exhausting. Our daughter who began this process as a child, is now a young lady. She has been asked to carry a heavy emotional load, and it has aged her. She wants desperately to care about what 13-year olds are interested in, but that luxury has been stolen. The ravages of this battle have left scars on all of us, including our other three children. I never imagined life after cancer to be so complex.

It has been three years since that gut-wrenching day in the recovery room at the children's hospital. While Bailey's official cancer treatment ended two years ago, our journey will be lifelong. Once you are in, you cannot get out.  There are many days that I want to run screaming from this world and pretend that I never knew it existed, but it is impossible to un-see. Between walking with the families we love, monitoring Bailey for late effects, raising a daughter who is now an amputee, and following our call to fight for those who can't, we are in this forever. I am slowly and somewhat grudgingly accepting that we could not have gained the good, without experiencing the bad. I wish that weren't true. I long for a less painful way to grow, but the two are joined completely. Very rarely is there a simple conclusion to the difficult parts of our lives. The normal pattern is not valley, mountain top, repeat. It is the combination of deep chasms, steep climbs, and gentle undulations. There are mountaintops, but they are fleeting.  It is not sorrow or joy. It is both-and. There is good. There is bad. And sometimes learning to live in that tension can be ugly. I am clinging to the hope that some day, He will make it all beautiful. 

It is difficult to admit, because there is an expectation (at least self-imposed) to be joyful all of the time. We won the battle, right? But permanent joy is obviously unrealistic. Thankfulness overwhelms, but this journey is never over and the hard parts of it have been much more frequent than we imagined. Most parents experience some level of PTSD and depression once treatment concludes, and this was no different for our family. Fear and anxiety are constant companions. While some days we raise our hands and turn over our worries, many times they gain a choke-hold on our joy. Living in the day, with hands open to the Giver and not clenched on the gift requires consistent work, prayer and time with God. Seeing sick and dying children beats down your soul. We have watched too many hurt and we are weary. We have chosen to invest in the childhood cancer community because we feel called to fight, but it is not without a cost. Looking at old pictures of Bailey has become difficult. The pictures during treatment dredge up all of the emotions once again, and the pictures of our warrior princess with two healthy legs, they make my heart ache. Nothing anymore is ever just a twisted ankle, or a headache, or tweaked something. Anytime Bailey complains of an injury,  I can feel my chest tighten and my heart race, because the word relapse is always lurking in my mind, easily summoned by an errant ache or pain. And the late effects? She is an amputee and this creates its own list of difficulties. It doesn't seem fair. To think that this "cure" can be the origin so many other real and painful long-term issues, how much must these children endure? Living in the after has been a more challenging road than we expected. 

The Good
But there is another piece to this picture. While much of it has been difficult and painful, there is also tremendous good. Our family is different in many ways and this blessing could not have come without the walk through the valley. Our joy is so much bigger. A typical day feels like an amazing gift because we lived so many that were anything but normal. We love being together as a family, after so much time being separated.  Our purpose for living and for making the time we are given count has been renewed and clarified. We love more completely and with more empathy and tenderness. We know better how to walk with and serve someone who is suffering. We understand that to someone in pain, using hands and feet to meet their needs is much more helpful than throwing out Biblical platitudes. We have gotten to know some amazing cancer families and nurses, people who will forever be a part of our lives. We appreciate life on a different level. And one of the most amazing results, is that our faith has been tested, and it withstood the fire. It is real and there is tremendous peace that comes from this. 

The Ugly
So here is the ugly. As we have spent more and more time on this windy road, we are learning to better navigate, although it is never easy. We live in a culture of prosperity theology, which really isn't theology at all, but is more about being happy. What can God do for me? Sadly, it is not possible to face the broken life of this fallen world and be consistently happy. Completely impossible. Suffering is unavoidable and it will come to everyone. We also live in a religious culture in which people try to wrap up God's story in a neat little package. I suffered, God did this, and now I can see why I had to go through it, but hooray it is over.  We will neither always be happy, nor will we always see the bigger picture of how God is using our pain. Yes, there are amazing miracle stories wrapped in a neat little bow. Is this your life? It isn't mine. Many times there will be overwhelming pain and we will never understand it this side of Heaven. I'll close with this quote from Kara Tippetts, a brave and full of grace mother of four, spoken as she was close to death after a long battle with cancer:


"Suffering isn't a mistake, it isn't the absence of God's goodness...because...He is present in the pain." 
- Kara Tippetts


One caveat to this entry. This is OUR after. It is my experience as it relates to our journey. I cannot speak for the grieving mothers who have lost children to this beast. For understandable reasons, they may not be able to find any good in any part of their journey. The mamas of Nolan, Brayden, Alyssa, Sydney, Sierra, Lily, Mathias, Gabriella, Erin, Kylie and the seven kids who die every day from cancer...they have their own story to tell. For more information on childhood cancer, please visit (and like on Facebook):


5 comments:

cjfountain said...

Thank you for this post. My son is a brain tumor survivor of 12 years now. Though his diagnosis was different and his late effects are different, the same God is getting us through. www.lesfountain.com

cjfountain said...

Thank you for this post. My son is a brain tumor survivor of 12 years now. Though his diagnosis was different and his late effects are different, the same God is getting us through. www.lesfountain.com

Unknown said...

Tiffany - We haven't met but I feel like I know you through your writings. Thank you for sharing your heart so openly because I've learned so much from your family's journey. I can't relate to the trials you've faced but I hope that my family's faith would be as strong if (or when) we're tested. My heart goes out to you while my prayers go up for you.
Blessings, Tina
PS: I love getting to know your mom in my Bible study group!

Samantha said...

Yes. Yes. Yes. Our daughter's 3 years ago diagnosis is coming up soon. I'm thankful for the reminder that all of this tension is not just me.

Jen Vanzuiden said...

Thank you for your post!
March 31st will be 15 yrs since my daughters diagnosis. She was diagnosed with Ewing's Sarcoma in her left fibula at the age of 7. She will be 23 in September!
We also had to make that decision on where or not to amputate her leg from the knee . We asked our doctor if there was a gaurantee the cancer wouldn't come back if they took her leg. His response" the numbers between the two options are so minuscule ". As we sit there asking a hundred other question, Lizzie turns to us and the doctor, in her little girl voice she calmly says: Doctor- if there is no gaurantee and numbers are small then you won't take my DAMN leg!!
With that being said, our orthopedic team did a tumor/fibula resection. Lizzie wears an AFO brace when she is going to be doing something strenuous.
Even 15 yrs out, we still go for her yearly check-up, I still get that little wave of anxiety when she doesn't feel good or a new ache. Those things won't ever go away. To understand some of the issues I was dealing with right after treatment I read the Lance Armstrong book"It's not about the Bike".
Thank you for letting me share a little bit of our story.
God Bless!!
Jennifer VanZuiden
AKA
Lizzie's Mom