Radiation-Halfway.

 

Well here we are smack dab in the middle or Lane’s radiation and chemotherapy regiment. I’d like to show you what we’ve been up to since my last post (which has been a while) and how we are doing today.

 

Our very first time shooting (We live in Idaho now… I think it’s a requirement!)

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A butterfly, an owl and a unicorn stopped by for Halloween.

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  Princess party at Disney on Ice.

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We had a sweet Belle turn 6!

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Some pretty amazing cancer fighting gear was made for Lane (Thank you Peach’s Neet Feet).

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We’ve been serenaded in our room and welcomed surprise packages when we got home.

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We’ve officially became Team Lanie Bug and have a ton of groupies.

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We take selfies in the kitchen before school.

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A couple of weeks before radiation treatment began we noticed some changes in Lane. She began suffering from neuropathy, her hands and feet are weakened by nerve damage, simple tasks from holding a spoon to walking and standing became challenging for her. That day that we visually understood the affect that chemo was having was indeed a “last straw” moment and Greg and I cried for our daughter.

Lane’s dose was reduced by half because of the severity of the side affects…this was just 2 weeks before radiation began. Even though we ache for Lane, she does not ache for herself. She asks for help but never complains. She laughs about much and cries about little. She can’t put her shoes on or brush her teeth but she does laugh loud, joke often and play much.

Lane is the definition of contentment.

Lane started radiation on a Monday at 6 a.m. check-in. We held her in our arms as they sedated her. She was terrified and so were we.
My heart is screaming:
“I will never be okay with any of this.”
“I will never accept what is happening to her.”
As always we will do what we have to do in hopes for a bright, healthy and joyous future.
Lane on the other hand is teaching me something much different.
Will.
She has a brazen will to get past the hard stuff and onto life.
She voiced her fear about the first moments of the sedation medicine. It makes her feel like she’s screaming and we can’t hear her. So as she sits on our lap and as the medicine is administered she lays her head on our chest and we whisper,
“We can hear you, we can see you, we are right here”
She takes a deep breath and she’s swallowing her fear.
Each day is better. Each day she tries to stay calm and tries to wake up light hearted.
This little girl gets up at 5 a.m. with a smile on her face and has slowly sought out the positives of this grueling experience.
She loves the nurses and the little reindeer on the walls.
She likes her wagon ride from the surgery center to radiation.
She likes that her cheeze-its are ready and waiting when she wakes up.

All of my emotions are sewn into my heart with a very thin thread so before I come undone a few words to leave you with,
Lane is incredibly strong, lovely, brave and stubborn. Lane is 4. Lane is amazing!

Now, I must attend very serious business…
Blanket castles.
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Heavy Shoes.

 Heavy Shoes. That’s what it feels like. These weeks leading up to radiation and ultimately the 4 1/2 weeks that she will actually do radiation is, each day, walking in heavy shoes. Radiation, chemotherapy, sickness and side affects are caked like thick mud on my heavy shoes. This is a path we must walk…she must walk.

Radiation:

The pro’s being an ideal outcome of…cured.

The con’s being dry eye for the rest of her life, halted bone growth, possible but unlikely brain injury.

My friends, walk a mile with me in these heavy shoes.
Remember…

Remember when Lane was first born.

Remember she always loves to cuddle.

Remember a tantrum could be stopped with just a hug.

Remember she’s always had a built in best friend.

Remember her first steps, her first laugh, her first words.

Remember when life was simple and endless adventure was our daily destination.

 Remember every birthday and every person that loves her.

 Remember all the times your heart twisted when she was hurt, all the teachable moments, all the things she loves and all the bad dreams she’s had.

Her life is etched on mine.

Now it’s finally here. Radiation.
She will be up early every day. She will have 5 day treatments for 4 1/2 weeks.
She will be sedated for ever single treatment. 23 days of sedation.
The day will begin with a 6 a.m. check-in and they will put her to sleep as I hold her.
When I think about this day a hot, sticky fear arises in me. Of all the things that she’s been through this is the hardest for me.
My stomach starts to churn when her body goes limp and the darts of helplessness steal my air.
Remember my girl Lord, Remember her.
Lord, help me to be strong. Be her rock through me.
After her 10 minutes or so of radiation she will be wheeled back to recovery.
Waking up from sedation is a marathon. She screams and cries. Her eyes are fuzzy and she’s discombobulated.
When she can eat and walk then we can go home…and do it all again every week day for 4 1/2 weeks.

Are your shoes getting heavy? Do you see my girl?

I ask you to please join me ,every day,
in exchanging our heavy shoes for wings.

Isaiah 40:31 But they that wait upon the Lord shall renew their strength;
they shall mount up with wings as eagles; they shall run, and not be weary, and they shall walk and not faint.


As we prepare for this journey we ask you to think about supporting our family by purchasing a t-shirt.
We created these t-shirts for our family and friends that are praying for Lane and want to show their support. Theses t-shirts will be a visual encouragement and will financially help during her radiation treatments.
Please visit- http://www.booster.com/teamlaniebug if you wish to get involved.
Thank you.

Hope for the helpless. A father’s perspective.

Where do I start?

Bethany has asked me to write a post for our blog. Something that might give a glimpse into my side of all that has happened.

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Before I start, let me say that Bethany has been amazing. I always knew that she was a great mom and a wonderful wife. These are the times when so many people can drift apart because they can’t deal with tragedy together. She has been everything I’ve needed her to be through this. She is my perfect partner…My Amazing.

So what do I say about all that has happened? Everything I knew or thought I knew about our life was shattered? I could say that the silence after that moment was deafening. I couldn’t hear myself think. I couldn’t breathe. It felt like my heart was cracked down the middle. The pieces of our shattered lives lay on the ground outside of a car dealership in Wenatchee. I couldn’t do anything.

Bethany was on the phone when I showed up but I couldn’t read her. She looked stunned but I hoped that could be a good thing. Maybe the doctor was saying that it was just a scare but we can move on with our surgery to remove the tumor because as first expected, it was just a fatty tumor. Then she hung up the phone and in that moment her eyes told me everything. They told me all I needed to know, more than I wanted to know. Our baby has cancer. BOOM!

In that moment our lives and all that we thought we were doing on this adventure came to an end.

How can this happen? My innocent little girl? She still loves to linger, and I love to watch her linger, in the 6 month to 2 year old toy section at the grocery store. I see the joy in her eyes as she finds toys that we bought for her when she was 2. Her eyes are full of possibilities. I don’t know how to express the love I have for her. She’s my sweet Laney Bug. She has an eternally optimistic smile. Her hugs are the best this world has to offer. Her laugh is like music to my families ears. She loves to be tickled.  She is all that is perfect in Bethany. Everything I fell in love with 9 years ago is wrapped up in our little girl.

And me? I am supposed to be daddy, the protector of this amazing innocence. I’m the one that is supposed to take away the pain. I was helpless. I am helpless. The pain of knowing that no matter what I did, no matter how much I wanted to take all of the bad and put it on my shoulders, to take the cancer into my own body and fight it for her, I couldn’t. Those words still tear me apart now. I can’t do anything to take it away from her. Oh, how I want to take it all away from her. I’ve asked the doctors to give me shots when she gets shots just so she doesn’t have to go it alone. They just laugh. I was serious. When she gets her tape off from where her port is accessed, it hurts. The nurses say that it is usually the worst part for all the kids. After I saw how much she feared it after the first time I gave her my arm. I told her to pull my hair from my arm and I would share the pain with her. She did.

I am not a gluten for pain or punishment but I made my girl a promise. I will be with you every step of the way.

We were swimming together at the lake. Just her and I. We were splashing around in the water. I was soaking up every moment with her while she was unaware of all that would come in the next year. I was holding her in my arms when her eyes looked past me and caught something that excited her. “Daddy, I want to swim to that pole.” I turned to see which pole she was intending to swim to. It had to be a couple hundred yards away and probably 200 feet from shore. “We can’t do that. It’s a long way away.” She looked at me with her blue eyes and said “Please, I want to go there.”

We went. In reality, I went and she held on. She kicked her feet and I let her swim a little but very soon after departure she was tired. It was my opportunity to show her that we could beat anything together. We created our own victory chant in the water. “We are strong. We are warriors. We can beat anything together. Nothing can stop us.” I promised her half way through that when we made it to the pole I would carry her on my back all the way down the beach back to our spot on the grass. We made it. She hugged me and I kept my promise and carried her all the way back on the beach.

She still talks about the pole we swam to. She asked me during chemo this last week if I still remembered it. Of course I do. I asked her if she remembers what we talked about. She said, “We can do anything together.”

This story of ours, the Sanwald family, has many parts to it now. Pain, hurt, anger, hate, fear. These are where it began. Our real story has been replaced with Joy, faith, hope, Love, lots of love.

Ours is not a story of cancer. It’s not one of defeat or fear. Our story began on a cross. Many times I have lost sight of our story, not for a day or a week but years at a time. Jesus Christ is my friend. While I’ve turned my back on my Friend many times he has never let me go. He is in the lake with us swimming with us to the pole. When we are weak, He is strong. He has promised to carry us home when we reach the end. Our story has changed from the temporary, the mortality of this world and has become about the eternal.

I can’t say that I trusted God throughout this. I can’t say that my relationship with God was perfect. I can’t even say it was good. I knew that God was real. I knew the Bible was true and that Jesus Christ was my savior. But my relationship with Him was close to non-existent up until a few months before we moved to Idaho. He had begun to orchestrate undeniable things in our lives that brought us to where we are now.

Because I knew that God had brought us out of Chicago and into a place foreign to us I was ready for a battle. We fought…I fought. He listened. I sat in the basement and I let it all out. How dare you? She’s mine! Don’t you hurt her! He let me be angry. He let me scream. He let me cry. He cried with me. “She is mine too and I love her more than you will ever understand.” He held me close. He didn’t let me go. Peace settled over me. Peace settled over our home. We can do anything together.

Snapshots…

 

Several weeks have past since we cut our hair.
We’ve managed to sneak some fun in, reach milestones, meet more great people and see prayer answered.

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We’ve watched football. The good. The bad. The really ugly.

 

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We’ve seen what can happen with a whole box of apples while mom is on the phone. It was also just as much fun making them into applesauce, apple juice and pie filling.

 

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We’ve celebrated a 1st birthday! A delicious first birthday.

 

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We’ve snuggled together for treatment.

 

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We’ve taken our fair share of selfies 🙂

 

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We’ve had great friends decide to wonderfully symbolize their prayer for Lane with these Overcomer bracelets. We will wear this bracelet until Lane has conquered cancer and finished chemo.

 

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We’ve had gigantic pizza with friends.

 

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Music at treatments is just what we do…no big deal.

 

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We are prayed for constantly and receive support continuously. We have basket raffles, Tupperware parties and fundraisers from people who just want to help. Thank you all!

 

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We pumpkin patched our way through this beautiful day. This sweet girl also received the nomination for student of the month in her Kindergarten class!

 

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We take mountain side 8th anniversary drives.

 

These pictures are a snapshot of our life lately. Our calendar is full, we go to bed late and wake up early. God is good. A marvelous thing is happening with Lane and her treatments…

She’s feeling better!
Her treatments are the same but her recovery time is remarkable. She’s playing more and crying less.
She’s actually playing on the same day of her treatment.
Prayer works!
I follow her around like a toddler taking their first steps,
“Lane, maybe you should come lay down” I wince.
“Nah, I wanna play” she laughs as she runs to the neighbors house.
Today she lives in victory!
Then I hear those two words…
“I’m hungry”
Act casual. Do not pick her up and twirl her sweet face around the room.
“Sure”
We usually settle on soup but sometimes potatoes will do.

During all of these events are the workings of an actual life. Decisions to be made and sacrifices to make. I find that many days I feel like Peter walking on the water. Life gets too overwhelming and If I don’t keep my mind on Christ’s truth then I sink, instantly in anxious despair. Ruth, a great friend of mine, told me to make decisions with prayer, counsel and research then stick with it 100%. So when we decided to stay at a job because we saw God moving despite the absence of it meeting our monetary needs…that advice was divine. We understand that what’s happening with Lane is a gateway for God to work. Our lives are changing. We’ve seen God provide at the 11th hour and our needs have always been met.

Trust me, we’ve drank the watered down version of Christianity.

We’ve definitely defined how God can work by our own reality.

We’ve greedily accepted the cop out’s of a comfortable Christian life.

I’m starting to get the feeling that God’s trying to tell me something…

Surrender.

Cancer didn’t take our hair…we gave it.

Her hair started falling out on a Thursday, we cut it on a Friday.

 

 

 

 

A very special thank you to the Lord for the divine appointment when meeting Harmony Neely Clayton, who took the photots, and Michelle Nagle for putting together the slide show. This video is a very tender and soul baring time for my family but we feel the need to share the hope. The hope of our Savior Jesus and the scope of eternal life…

Where do you find your hope?

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God is in control.

I remember having complete peace the morning the port was put in. That unavoidable day had arrived but the anguish we felt in those previous weeks had given way to acceptance. No necessarily acceptance of the diagnosis but the acceptance that God was in control. The port has actually been a good thing. See the weeks earlier had been saturated with noise. Everything thrown at us was just white noise that we couldn’t process. Everything was too hard to contemplate and completely objectionable. With the port, in her chest and under her skin,  she receives all of her medication, chemo and fluids. We put medicated numbing cream on her skin over the port before any treatments so she hardly feels anything when the small needle is inserted. She had her first round of chemo the day after her surgery for the port placement.

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Lane’s first chemo treatment at Spokane Children’s Hospital. We were taking in the view on their outdoor terrace!

In the few weeks that she’s started chemotherapy we’ve definitely had good days and bad ones.  Out of her 42 week treatment plan we’ve completed 5 weeks. Greg usually takes her once a week, on Thursdays, up to Spokane (about 45 minute drive) to get her small dose of chemo. She get’s her weight, height and blood work. Before the chemotherapy can start the blood work has to show that her counts are high enough for this weeks dose. So it’s about a 4-5 hour day. Sometimes there are additional blood tests that are required during the week and we can go to a local hospital right down the street. She’s been to the ER two times so far. Once was for a slight fever and the other for not being able to keep any food or water down for several days. You see, if Lane has a fever of 100.4 or over she has to go into the hospital. That particular fever I felt as she laid next to me in bed and her head was on my arm. Taking her temperature confirmed that this would be an early morning started by a hospital visit. After all the labs were back and fluids administered we were able to go home. She’s also completed one 5 day session (she has to go every day for 5 days).  Even though it was tough for her to go every day she didn’t have quite the reaction to this round as she did the others.

She was able to play almost every day and she held an appetite.
There is so much victory in that sentence!

Lately we don’t know what most days will bring. Sometimes she screams in pain because her stomach just, plain hurts. She will cry, “Mommy, pwease caw the doctaw” but I know there is nothing that can be done. I’m aware now, more than ever, that God indeed fearfully and wonderfully created us. The simply, miraculous unseen ways our bodies work can only fully be appreciated once they, well, stop working. Sometimes the vicious cycles of medicine to correct errors of other medicines can have a tumultuous effect. Some days she’s hungry but just doesn’t want to throw up and eating has been a sobering, tough battle.

Other days she will sit in a chair outside and watch her friends play.
Lord Jesus come quickly.

But the good days, oh the good days are such a gift. Lane will wake up and we hold are breath.
“How did you sleep?”
She takes a second to think, “Good”
“How do you feel?” we ask with fresh hope.
“I feel, good” her sweet smile sparks our joy.
Those days are met with smiling, laughter and playing. Those days she’s not sick. Not battling. Not fighting cancer.
She’s just 4 year old, Lane. Thank you Lord for the good days.

When she does have to go to treatments there are many beautiful people who volunteer their time to bring much needed laughter and happiness to the kids. Puppet shows, visits from princesses, face painters and even a foot massage. We have a challenge at every treatment-meet a new friend and remember their name. Her face lights up when she comes home and tells me of her victorious mission…even if dad has to remind her of their name:)

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Lane became a Tiger during chemo!

There is one distinct fact that I take away from this today, that everyone is dealing with something.  Some people walk around with a pebble in their shoe their whole lives. Some are victorious and some waste away with discouragement.  But today I will, because of my circumstances, be a light. I still vividly remember my mother, shouting out to us as we got in the car for school, “Be some one’s hero today!”

Challenge Excepted.

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A very heart felt thank you!

 

So many tremendous life changing experiences have happened over the last few months. I’ve laid in bed many nights thinking about this post. The post I wanted to write of thankfulness. I find this season of life to be one big oxymoron. In many cases I’m very sad but I’m also very happy. My heart is broken but it’s also full. However one thing that has remained consistent is I’ve never felt alone. There are several pieces missing to all of my posts. Those pieces are all of the help, love and encouragement we’ve received along the way.

During the initial diagnosis my in-laws, Rob and Karen Sanwald, played a major role in helping us through the phones calls and tests. They’ve driven, after work, through the night to be here for appointments we’ve had the next day. They offered us time. Time to breathe for a minute, get coffee and just be. They’ve prayed for us and supported us. Thank you for that!

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I can not think of a time when someone wasn’t encouraging us. My sister, Tracy Schoppen, was looking for flights just days after the diagnosis. She was here for tests and phone calls (the scary ones) too but mostly complete support. She’s spent hours on the phone with me, encouraging me, laughing and crying with me. Many of the women from her church have been praying for Lane, who has affectionately turned into “our Lanie girl”. Tracy and Jerry (brother in law) have also spread Lane’s story to their church and friends. Thank you to MBC in Minooka IL for prayers and love for Lane. Tracy, thank you for being my sister and friend. I love you.

My parents and brother flew in for Lane’s surgery. We lived faith unfolding. We were in the valley and the mountain top in one week. My parents, John and Edith Jordan, have encouraged me, cried with me (2am. phone calls and more) and sat in silence with me. Thank you for loving my girls!  Most importantly they have prayed with me and constantly pointed to God.  Thank you to their church, First Baptist Church of Lockport, for your prayers and support.  Thank you mom and dad. I love you.

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So here we are in a brand new place. We have no family close and a huge diagnosis. I can tell you we’ve never went without a babysitter, a meal or a friend. My neighbors have a huge part to play in that. Bill and Brandy Ellis are very much a picture of God’s presence. In all the states,towns, neighborhoods and houses God placed us here. Right next to people who exude God’s mercy. Four days into being in Post Falls, Idaho we started this journey with Lane. The Ellis family has been an intricate part of it all. We’ve spent many evenings laughing and talking with one another. Our children love each other like brother and sisters. Matter of fact I can get Lane to eat almost anything If I say that Logan likes it. I feel that most words cheapen how I feel about what the Ellis family has done for us. Thank you for researching this diagnosis with me, for endless hours of letting my girls play at your house, for stocking up on string cheese that Lane will inevitably eat, for making dinners, for watching the girls and for a million other behind the scene details. Thank you for being our friends.

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Through the Ellis’s we came to Real Life Ministries of Post falls and through that I’ve met some amazing ladies. My bible study ladies have been such a gift. They’ve given gifts, recipes and most importantly friendship. Thank you ladies for praying for my girl and our family. Thank you for dropping off baskets of food and toys for Lane before big treatments. Thank you for being involved.

Through these past few months there is no one that quite feels my emotions other than Greg. Greg has been an amazing partner to me and a giant protector to Lane. He carries her when she can’t walk. He sings to her when she can’t sleep. He holds the bucket when she’s sick. Greg has gone through sleepless nights thick with grief but he carries on. Thank you for your protection and your courage. Thank you for going to work even when your thoughts our clouded by circumstances. You are standing in the gap for our family, thank you. Some days you carry us all on your shoulders, thank you. You’ve trusted God and live in hope. Thank you Greg, I love you.

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 To my sweet girls Lane, Belle and Emmy. Belle you are such a sweet fire. You hold Lane close when she’s hurting and cheer her up when she’s crying. You are gentle with her when she’s strong and you two laugh my heart to pieces almost all the time. I love you:) Emmy, you are just a giant sprinkle and confetti filled bag of joy. You make us all smile and laugh often…I love you:) Lane, you are the essence of bravery. You are lovely and pure. Thank you for fighting and for getting past the bad days to just have fun, to live. I pray that God brings you closer to Him through this. I pray that for all of us. Thank you my little girl, I love you.

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These are a few distinct instances of people being here for us. I have many facebook friends, old friends and new, family, many churches and people we’ve never met who are praying for us fervently and have supported us.  Those texts, emails or phone calls are always right when we need them. The packages, gifts and support are such an amazing example for us to share with our girls and constantly point them to Christ and how He’s taken care of us. A very heartfelt thank you.

You see, terrible things can happen and do happen all the time. God knew this was going to happen and prepared us and others for it. Our hope comes in these words, God’s people have shown us His love. These thank you’s are a roadmap of God’s presence. He’s still here.

He answers prayer.

It’s always a tough question. When can you exercise the “moving mountains faith”? Usually we just pray for the will of God and ask for strength to accept it. I’ve always struggled with the line in the sand. When can we be like Jacob when he wrestled with God and said “I will not let you go until you bless me”? When can we be like Gideon and need reassurance for what he’s told us? Sheesh, he asked twice for God to show him he was there and God did it…twice! Peter walked on water. Elijah called down fire!  Did God tell him to do that or did he just know God’s character enough that he knew God would show up? Do we have to ask to have great faith? Do we have to pray for the will of God to include great faith?

So we wrestled with God, we walked on water, we had a mustard seed of faith. We prayed God would take the cancer out of the removed tumor. It couldn’t get any crazier than that. The doctors, nurses and well, science told us that. We went for days praying and rejoicing for what God was going to do. I would like to say that this is where our story got an explosive result and no cancer was found. It’s not. God did answer our prayers. His answer was no.
Our doctor called on a Wednesday night and told us the biopsy had come back positive (again) for Alveolar Rhabdomyosarcoma. The numbedness was spreading. As if that wasn’t enough to turn our stomachs we were told that the margins weren’t good. She would have to do radiation. A lower dose because the tumor was removed but she still had to do it. Once again we received the news when we were in the car. We just sat there. Completely heartbroken and infuriatingly confused.
That night was the hardest for us. Rock bottom. We had seen Lane go through all of this. We had prayed for an end and believed it. I felt so panicked. This was happening. Nothing in the way of stopping this now. I was drowning in fear and anger.
“God what happened?”, I cried.
I’m still here.
“We believed, we hoped, we trusted YOU”
I’m still here.
No matter what I unleashed at God that day. That still small voice surrounded me.
“Ok, You’re still here? A lot of good that does us, right God?” Lane will have to go through ALL of it…I thought a mustard seed of faith would save her. I believed it would spare her.
I felt his voice in my bones, I felt it in my anger and I surely felt it in my hurt. As Greg and I collected ourselves to deal with this he told me that he felt God asking him “Do you still trust me?”
We had to talk with the doctor face to face. We needed to hear it from her.
So, that morning the doctor told us, again, what the tests said and what we needed to do.
“So what if we decide not to do this?” What if we take her out of here and do natural remedies?” I asked with anger and desperation.
Her answer was short, “She will die.” “Her cancer will spread and in 6 months it will be everywhere.”
Reality.I was reeling from that stark reply. This is reality.
They wanted to set up the port surgery for Friday(the next day). “No way, we have a party for Lane on Friday.”  We promised her a “stiches out” party after her first surgery. We have friends and family coming in to celebrate with her. This may be reality but there was no way that she wasn’t going to have her party on Friday. This much I could control! She deserved one more weekend of fun before her 42 weeks of treatment. So we made plans to call next week to schedule the port and went home, numb.


We had a party to get ready for. Greg blew up the balloons and hung the streamers. Rob(Greg’s dad) made the cake, our neighbors(Bill, Brandi, Sydney and Logan) brought over a piñata and fun ensued.

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I don’t know. I’m sure there are great philosophical debates on all of these things. I’m sure I could have read more books or asked more opinions but I really wanted to hear from God. Just from God. It wasn’t the answer we prayed for but we did hear from God. That still small voice…I’m still here. He’s been here from the beginning, leading us to a place that we have no choice but to depend soley on Him. This is a journey that we have to take, that Lane has to take. We’ve found ourselves in a completely vulnerable position in many ways. However we’ve never once needed for anything. We’ve had several obstacles since this started and God’s taken care of all of them. His people have been a supernatural blessing to us. In all of this hurt God had us! Yes, God has been taking care of us. I believe that God’s heart was broken for us that day. I know he hurts for us that we are sometimes limited by our story and unable to see his grand picture.

But today I know this…

He’s not dead. He’s not sleeping. He’s not apathetic. He’s alive!

He’s working in this broken world. In this world that fosters illness, decay and tragedy. God has been in the midst of my family, He’s still here!

Sometimes He calms the storm with a whisper peace be still
He can settle any sea but it doesn’t mean He will
Sometimes he holds us close and lets the wind and waves go wild
Sometimes He calms the storm and other times he calms His child.
-Scott Krippayne

Today is the day.

 

 As we watched Lane sleep our thoughts ran free and terrified. I held her hand and thought about the surgeon consultation that day.

“Will she have problems with her opening her mouth?”
“Will she be able to open her right eye?”
As I thought of the answer I held her hand tighter.
“We don’t know” the surgeon said.

See, her tumor was by her right temple. They had to get the whole tumor so how many vessels and nerves did that include? “We won’t know until we get in there”, the surgeon said. In all fairness I liked our surgeon. He was in this from the beginning, from the biopsy. He tried to exude hope and I was grateful for that. We told him we were praying for a miracle and he said he would do his very best. “I’m taking that to the bank”, I smiled. He echoed “Take it to the bank!” That moment brought us a much needed breathe of laughter.  “Ok, (heavy sigh) we’ll see you tomorrow.”

She looked so little and so peaceful. I couldn’t help but cry as I watched her sleep. What would tomorrow bring? I thought of our second consultation that day. The plastic surgeons consultation. “Can you prepare us for what she will look like?” The answer was a black hole…”No, because I won’t know until it’s over”. If the tumor was attached to the skin they would have to take the skin. God, please help her. If it was in the bone they may have to take the bone. Lord this is too much. Our resolve for the day was dwindling quickly. With each word it melted away. Tears welled in my eyes as I realized we had no certainty to hold onto. Blind faith. This diagnosis has trapped us in the dark unknown. The decisions we are making for her could change her entire world. Are we doing the right thing? How do we make decisions on something we know nothing about? Excruciatingly out of our control.

With heavy eyes I stroked her hair and talked with God. I’m afraid Lord. Please bring her back safely to us.


 

Today was the day.

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Preparing for surgery. Greg was able to stay with her until she fell asleep.

We told Lane she was getting her “bump” removed. She was so brave. All she ever cared about was getting it done and going home to play with the neighbors. So after the papers were signed and prep was done she was ready to go. “Treat her as if she were you own”, I reiterated to the doctors. As Greg walked with her into surgery I was escorted to the waiting room. I saw my family waiting. We hugged and cried. We cried a lot. I was so glad that they were there. Such comfort to a breaking heart. Greg joined us in the waiting room, his eyes stinging red, and we prayed together.

We’re giving her to you God. Please protect her.

Now we wait. We looked at every nurse that came into the waiting room, our eyes searching for news. We paced the halls. We talked. We prayed.

“Are you Lane’s family?”, said a nurse.
“Yes!” I cried.
“The doctor wanted me to let you know that Lane is doing great and they got it all out”
They got it ALL? No complications? My girl is ok?
She said the doctors would be out to talk with us soon. We rejoiced that she was ok. I wept as fear left and peace overwhelmed. Thank you God!

The first thing the surgeon said to us as he walked out of the operating room was
“Lane is still Lane!” Oh, what a beautiful statement.
He told us that she did well and was in recovery. No skin or large pieces of bone were removed. The plastic surgeon did a beautiful job. When I went to recovery I saw Lane. Yes, Lane the same way she was that morning.
21 stiches and a scar that wouldn’t be noticeable when her hair grew back. Amen.

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Lane did so well that we were actually able to go home a few hours later. Lane went through a war today and she literally has the battle scars to prove it. Keep fighting my love. Thank you God for giving her the strength to forge ahead.

Greg and I did our best at fielding the days as they came. We tried to delay our concerns and tears for after the girls went to bed. We played soccer, laughed about silly things, baked cookies and lived. We searched for hope in every corner of every conversation. We started praying big. I mean, walking on water big. We knew that there would be another biopsy on the removed tumor. Which was the life of our new hope.

Lord, please remove the cancer from the tumor. No cancer, no chemo.

We prayed for it along with many others. We believed it. This test was, in our eyes, our last chance before chemo. We wanted complete healing and we begged for it. Ok, she was diagnosed yes. She had surgery to remove the tumor. Lord can’t this be enough? Of course we called into perspective the possibility of grief talking. We knew it sounded crazy but we asked for it anyway. We were 100% in.

We called and canceled all of her future appointments.

We charged the mountain.

Today we live!

It’s been said that a person could live 3 weeks without food, 3 days without water and 3 seconds without hope.

We had a consultation with the surgeon for the port the next day and her actual surgery was scheduled for the day after. After meeting with him and feeling very uneasy and unsure about the port we decided to cancel the surgery. Cancel? “Can we do that?” I remember asking Greg. ” We can do whatever we feel is right”, Greg reassured me.  Okay, we had to be an advocate for Lane. They told us originally she would have a port that was completely under the skin. Now, in the office they are showing us some alien looking thing with tubes hanging out of her body. Um, no. It took every inch of me to digest the thought of a port at all…now you want my 4 year old to be ‘careful’ and ‘gentle’ with these tubes? No swimming or a regular bath for a year? No swinging on trees or jumping around without worry that it could dislodge?  After all, we still had hope right? The official pathology still hadn’t come back so we had time.

Had time.

The doctor called.

The official report has come back and it is Rhabdomyosarcoma. Only it’s not embryonal. It’s alveolar, the more aggressive kind. As Greg talked with the doctors I could hear him talk about the port ‘situation’. The doctor said the port that they were going to put in was worst case scenario. Greg asked,

“Are we at worst case scenario?”

“No, we have some time.” This ‘time’ he was speaking of was Lane’s review before the tumor board. That was on Tuesday. The tumor board was a panel of about 25 oncologist from the pacific northwest and they would have a consensus of the next steps for Lane. For the first time, we were told that surgery may be an option. Hope. 

If they could do surgery then she may not have to have radiation.
If they got the margins they needed.
Wait! Radiation? This wasn’t even an option. Wasn’t even discussed.
It didn’t matter because we were praying for a miracle. It was just that simple.
“Lord, please let the surgery be an option if that means no radiation”

Tuesday afternoon we got the call. The consensus was surgery. The board had agreed that it was the ‘right’ next step and after surgery then chemo.
Wednesday was the consultation.
Thursday was surgery.

Lane you are so strong. You are such a sweet gift to us. I admire your courage and your faith. I love when you name rocks and pick up moths. Thank you for making conversation with a series of giggles…that’s my favorite. God loves you baby. I don’t have many answers for your hurt except God’s working on it. God’s working on it my love.

Life was moving so fast and all we wanted to do was soak it up.

Indeed, today we will live.

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