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.

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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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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.

It’s gotta be a mistake!

Just an ultrasound? To confirm it’s nothing, right? So off Lane and I go to the hospital to get this ultrasound. So many people prayed for her that day, sent well wishes and notes of speedy recovery. Lane did great, I did ok. I was actually really annoyed that we were there. She’s fine but we have to do all this just to make sure, I know. Later that day we got the call.

It’s a mass.

The ultrasound had comfirmed it was a mass. I cried. We cried. A mass, boy, that sounded scary. Greg sat a chair outside, watching the girls play, and cried silently beneath his sunglasses. What was happening? They’ve got it all wrong. She was hit at a birthday party. It’s got to be a mistake.

So we schedule to see a different doctor and talk about a biopsy. Lane, my sweet Lane, got a fine needle biopsy right in the office. Poor thing didn’t see it coming but neither did I really. Honestly, this adds to my annoyance. Now my sweet girl has to be in pain because the radiologist can’t read the ultrasound right. Did he have a golf game he had to get to? Was his Mercedes being towed? Oh well, this will all be over soon. Sure enough the doctors calls a few days later and says the biopsy came back 90% fat cells. Yay! I knew it! It’s over. Except the radiologist is still really worried about the ultrasound and he wants us to do a core biopsy.

Really, is this necessary? I fought the impulse to say no and we scheduled that second biopsy. She would have to be under sedation. We had to sign all kinds of terrible forms that spelled out all the awful things that could happen. When talking to the anesthesiologist I could barely keep my composure, all I asked was that he treat her like she was his own. He said he would have her back safe and waking up soon. Off to the waiting room we went. It took only about 20 minutes, a very long 20 minutes. Sure enough, she was waking up in no time and we were on our way to Wenatchee (grandparents house)…pizza first though.

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(Nothing a little hot tubbin’ can’t fix)

Much that followed the next afternoon seemed like a blur until I started recalling it now. I grieve for the innocence we all new before that phone call. The annoyance of those doctors visits turned to fear in an instant. “I’m sorry to have to tell you this but the second biopsy would suggest it’s a sarcoma” echoed the doctor. The phone call was over but I was still stuck on, “I’m sorry to have to tell you this”. Actually, I think a part of me is still hung up on that phrase. Sarcoma, Children’s Hospital, Pediatric Oncologist…tomorrow. The few words I could recall. I was in the car when the doctor called. I pulled over in a hurry and received the news that shocked me. Hurt me. Broke me. I got off the phone and wept in words “they said it’s cancer”. I couldn’t breathe. We wept, bitterly.  We cried and gasped for air. We prayed fiercly…it had to be a mistake.