237 Sondays

To be honest this is the first time I’ve had even a thought to write a blog post since Lane left. After getting the girls to school and putting the breakfast bowls in the dishwasher I took a scan of my kitchen. Fruity Pebbles that jumped from the bowl still speckle the counter next to a picture of Lane and Belle in their sparkly Christmas dresses. I love this picture because in it they both are laughing and the picture is partially blurry but I remember it. Lane’s chubby face and Belle’s toothless smile bubbling with giddiness. I remember being frustrated that they couldn’t get their act together for even a moment to take a decent picture for our Christmas cards. Now, I love it. It was real life in action and it was precious. It was the before.

As I lift my eyes from the sweet picture I see Lane’s funeral poster that her class made still hanging on the wall. Her teacher drew a large elephant and all of her classmates signed it. The little notes are sweet and true for how they felt about my sweet girl. I can’t seem to yet take it down and I’ve realized I don’t have to. It doesn’t bring me pain but joy to see her influence on those around her. She was loved but most importantly she was loving. She’s had 237 days basking the warm glory of the Son. Sometimes it seems like a million years ago, a different life, but sometimes it’s like yesterday that stings with copious amounts of sharp venom.

The tree is up, we decorated it in blue for Lane. A few elephant ornaments, white snowflakes and blue glittered ribbon make it really shine. Our front table is decorated with pictures of the girls. The ones I took knowing it would be Lane’s last Christmas. It’s odd to look at them now knowing it would be her last Christmas. Trying to stay in the moment but preparing for today…when I knew I wouldn’t have her. Last year the presents under the tree were by any standards ridiculous. Abundantly more than we ever would give our children in any normal circumstance but what do you do when you have to take a lifetime of Christmases down to one. One last time. Her school gave, her friends gave, her family gave, strangers gave…it was spectacular.

I thought a camera would be a good idea. We bought the big girls one of those instant polaroid cameras with all the trimmings. The photo stickers, carrying case, colored filters and stickers. Most of the pictures were ill used on stuffed animals and random fuzzy landscapes but there are a few precious ones that I found after Lane left. One in particular is Lane, fresh from a bath in her minion pajamas posing as Belle took her picture. The bed behind her is skewed with toys and twisted blankets and pillows. That face, the face that I love frozen in time. It was a good gift.

A few days ago we made ‘Me and Lane’ snow globes. The kids enjoyed it and I just love anything that has to do with all of us being with her in any way possible. Lane is always present in our home, in our jokes or as we reminisce. Grief is bottomless. It’s confusing. It’s the great unknown world with no maps or flashlights…at least not at first. At this time I can’t adequately relay these last 237 days. So I won’t try. We hold the last few weeks of Lane’s life here very closely. It’s sour and ugly but there was tremendous beauty that came in one lucid moment of her final days.

My child, heard from the living God. He was calling her home and she was ready. She was excited to go. Fully and completely surrendered to her fate to accept another world. “He’s calling me home mom” she said with such distinct excitement. She had the faith only a child could. She wasn’t squabbling over pre-trib or post. She didn’t stand fast on Calvinism or Arminianism. She didn’t die on the hills of semantics or rest in her knowledge of Hebrew. She embraced the simple gospel. She knew the Living God was the way, the answer to the end of her pain and the surety of a reunion someday. She loved Him and He loved her. He called and she answered. She never looked back. It was as simple as that. It was the most beautifully simplicity example of her need and God’s saving grace.

This Christmas I will look at the lights and miss Lane. I will watch my girls come down the stairs excited for Christmas morning and miss the disheveled little girl that won’t be behind them. We will carry on as we did knowing she’s not gone…just not here. We will make breakfast and open gifts. Her laugh will be heard again. Her hugs will hold us tight again. The tears I will inevitably relinquish will be filled with my loss but mixed with His sure hope of a glorious reunion. I will also long for the day as I hold my sweet child as we gaze upon the true meaning of Christmas. In the presence of the Reason.

I will leave you with this poem. I wrote this for Lane when she was in the throes of pain on her journey home. Merry Christmas Lane…when Momma’s work is done I’ll be home.

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The bells were different on that day
The angels fell a hush
Could this be the girl they’ve longed for
Caused heaven all to rush

All waited with bated breath
As they gathered around His throne
To see the girl who God so loved
The one He called His own

We’ve seen Him grieve for earth’s heartache
That comes with scars and pain
He’s walked this road right by her side
This world is not her gain

The Savior turned and looked at us
“My girl is on her way”
All heaven buzzed with anxious joy
“She joined us today!”

As heaven opened up it’s wings
Came a bright and shining light
The little girl now perfect form
Had Jesus in her sight.

“Come, my love and you will see
Your body now is new
You’ll never have another day
With bruises black and blue”

“Every time you smiled
When the pain was hard to bear
The angels urged to bring you home
And be within my care”

“You walked a road so hard and tough
No child should ever see
But dear, my plan was always this
To forever be with Me”

“My sweet girl your home awaits
This day is in my book
Your captive life is now set free
Go on and take a look”

The angel stared at such a sight
A saint He had called Home
To see the freedom on her face
Knowing she’ll never be alone

Though the waiting earth below
Will grieve and wrench and ache
They loved this child so very much
Every effort they did make

The angel smiles and wished to say
“But what I see is her
A girl that’s made it through the fight
An everlasting cure”

” I know you weep and mourn her loss
But someday you will see
When Jesus calls you home for good
Together you will be”

– Bethany Sanwald to my sweet Lanie girl

 

 

 

 

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62 Polka-Dots

  She’s been sleeping in our bed quite a bit lately. 62 metallic gold polka dots I counted. There are a lot more but between the folds in her shirt, the comforter hugging her and her daddy’s hand lightly resting on her back that’s all I could count. Tonight like many others we try to absorb her, memorize her and try to catch the sand of the hour glass in our hands for just another minute.

I just realized as I sat down to write this that I haven’t posted for a year. I’ve thought about it many times but I suppose I feel comfort in keeping the details close as if people can’t see the elephant in the room. So I will try to give you a glimpse of our year.

  We moved into our new home! Yes, it was a sweat equity thing and we still have work to do but… ta dah!! I guess I should back up a bit. We were  living with our best friends (neighbors) while our house was being built. Fast forward to today and we are still living next to our best friends in their new house! It’s another amazing story but perhaps another time. We have 5 beautiful acres and mountain view! For some of you that have followed us from the beginning you understand the ordained amazingness of it. It’s something I am still in awe of.

We spent last year like many before it…enjoying life and each other. In April we flew to Chicago in a coordinated surprise for our parents 50th wedding anniversary.

 

They are beautiful. My parents are grand people with plenty of life under their belts. My mother is lovely and my father is strong. We spent the weekend all bunked up in giant cabin and I loved every minute of it.

We spent our summer grabbing our towels for days on end at the waterpark or making sure we packed our gym shoes for the roller coasters.

Of course through these remission days many phone calls were incoming and outgoing to my sister. As we all celebrated Lane’s remission we also struggled with the pain and declining health of Jerry. ER visits and increased medication were the subject of some days while planning vacations and dinner dates were others. Jerry’s motto was pretty much doing everything BIG. So when they came to visit this summer it was of no surprise to me that their visit to our neck of the woods was in Jerry’s words ” a total 10″.

 

My parents and my brother Jacob and his wife Heather also came for a visit. We spent July 4th once again with the sun on our faces and our feet in the water. We hit the taco joint a time or two, learned how to make coffee and got some spontaneous pedicures.

 

However behind the veil of  family fun was a mom taking pictures not just for the joy of the moment but to pause life for a token of remembrance. I always hold their hands a little bit longer, trace the freckles on their face, or study the way they move…so I can remember.

August 18,2017 (Pictures from a PET scan shortly after MRI diagnosis)

   After our cafeteria lunch we waited in the inpatient side of pediatric oncology. By the time the results came back the clinic was already closed. They allowed us to wait and the on call doctor would meet us in the room with results when they were ready. I knew it was back. Not because he suggested Lane go into the playroom when he walked in or because of the way the nurses looked at us. I study her face daily even hourly sometimes. I knew something looked different. As the doctor sat down he delivered her death sentence. “She will die from this” he said.  We collected ourselves and went into the hall to scoop up our girl and run away. As she saw our faces she started to cry and said “It’s back isn’t it’? We left the hospital hand in hand sobbing.

    Lane started a medicine that was a hope to extend time and slow the tumors. By the time she started the medicine the tumors had already spread. One tumor struck me as particularly cruel as it had attached to her rib bone and actually fractured it. That one felt personal. It felt needlessly insulting as if her cancer was flaunting it’s power.

Over the next several months there are events that I still have no strength to speak of. I will only say it is not my story to tell but I miss him terribly.

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   No sickness, no hair-loss and no throwing up. Those were her requirements before even thinking about additional treatment. ” I just wanna be a normal kid” she told us. This child has had cancer almost half her life. She’s fought harder and longer than I can grasp. My bones had to stand fast against my flesh wanting to wrap my arms around her and cry out how unfair, how tremendously devastating this was for her…for us.  How much I wanted her here with me and to collapse together into a world of hope that denies reasonability.  My love for her has to surpass my brokenness for myself.

That’s what True Love is.

Our conversations are a pendulum between the glistening shimmer of the golden floors of heaven and the breath of what’s left in this life for her. Time belongs to God. This is our motto. We constantly pray for a miracle. We are also carefully guiding our sweet girl on the path she has been given. Without fear and without regret. We have a deep sorrow that is tied with a ribbon of hope. These words can not possibly give justice to her or what she has been through. A few minutes of reading this can not incase our daily struggle between hope and what seems like endless weeping. However, she is a light that will never be extinguished.

She is the love of my life. 

 

May I present my warrior and remarkable gift….Lane Sanwald.

 

 

 

 

 

 

Life

We are in a season of lives converging. We have been on this cancer journey since June 2014 but we have lived in simultaneous medical battles with people who make up our heart and our home. So the updates that I have relayed to you have been from our personal trial to triumph stories but that isn’t the whole story. I’ve come to realized that we hardly, truly have the whole of someone’s struggle. We dole out our story in portions and tidbits but how can we bear to lay our hearts on the altar of reality? I will attempt to convey the meshing of new lives and old cornerstones that have become irreversibly conjoined to form the heartbeat of who we are today.

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Jerry Schoppen

 I am the baby of the family. My sister, Tracy, (who was 17 at the time I was born) has told me the story of the shocking phone call (that she intercepted) from the doctor saying that I was coming along. I have three older siblings and my brother Jacob and I (we are 10 months apart) came along quite a while after our family was established.
I liked this! Not just because I’m alive (which is super great) but because I gleaned the benefits of being a much younger sister.Jerry and Tracy were married when I was about eight years old. I had the pleasure of growing up with their children and doubling down on fun,memorable and grand childhood experiences.

Jerry is the fun guy.
The get it done guy.
There isn’t a deal he hasn’t found or someone left unpersuaded.
Jerry takes care of it.
Jerry has a bullet point list for his wisdom-laden advice.
Jerry has terribly placed humor. Seriously, terrible!
He is kind and generous. He is a man that follows Christ.He loves my sister fiercely and his kids are the apples of his eye.
I believe I had the pleasure of being in that inner circle.
I received that warm blanket of love and security.

Jerry isn’t just a stereotypical “brother-in-law”.
He’s my brother.
Jerry and Tracy have bore our struggle with Lane. My sister has hopped on flights at a moments notice and has sat with me when we’ve received devastating news. Jerry has paid for flights and babysitters as we navigated our first round of cancer.
As her first battle came to a close in the summer of 2015 we were ecstatic to be able to go back to Chicago to celebrate her remission.

We left Chicago with devastating news. Jerry was diagnosed with Pancreatic cancer.
We all battled Lane’s cancer. We had to pony up strength from everyone. Cancer is a family disease and all hands must be on deck to survive.
Now we had to divide and conquer.
While Jerry was busy fighting his cancer (which was kept at bay for several months), Lane’s cancer returned in the spring of 2016.
In a bitter exchange, Jerry’s cancer has also recently returned.

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Lane, Jerry and Belle a moment before we indulged in deliciousness that is Portillo’s. 

Two most beloved, sweet and kind souls now wage war against this heinous, dark beast.

Keep fighting!

My Beautiful Mother

When we left Chicago we saw some of the signs. My mom, Edith, would stumble over a few words here and there. She would grapple with a statement or two but nothing that couldn’t be easily dismissed. As the months went on and our family weathered the deluge of cancer struggles my mom was struggling too. My mom noticed she was having some issues.

She braved the doctors and tests.

My strong, beautiful, witty and sharp mother was diagnosed with Primary Progressive Aphasia. PPA is a neurological syndrome in which language capabilities become slowly and progressively impaired. She is compromised. She is lovely, strong, compassionate and capable.
There is no cure.
My mom is my biggest fan. She always has been. She’s cried with me in my deepest pain and held onto my dreams, fanned their flames and returned them to me. She has taught me courage and passion.
She has the best laugh.
She goes to God on our behalf. She begs the Lord for Lane’s life.
My mother will continue to struggle with speech and writing until she is unable to do both. I ache for her. For the life that she knew and for the life that will come.
Thank you for always standing outside to wave goodbye, for telling us every day to be someone’s hero and for your dedication to the truth.

I love you mom. If you never said another word to me I would know how much you love me simply by the way you look at me….I always have.

Keep fighting!

Linda Mitcham

Linda is such an important cornerstone to the community of women that I have come to love. Linda has been a steady voice when sanity seems fleeting. Linda is wise and kind. Linda has also been in this with us from the beginning. She is Brandy’s mom. So she is always aware of every chemo, overnight, ER visit and our tumultuous travels.

When Lane’s cancer returned in April we barely got time to catch our breath before we hit the ground running towards a cure. Brandy was there every second to discuss and help filter this -once again- reality. During this time Linda had been sick for about a month with mono. Her neck was severely swollen and she was very tired. This diagnosis was extremely taxing and she just wasn’t getting better.

A blinding flash of bitter reality hit the people that have been our constant cancer companions. I remember getting ready for our first doctor visit after Lane’s second tumor was removed. With taxing anxiety we thought about what this visit was going to tell us and then the knock came on the door. Brandy was out of sorts and shaken a bit. She said her mom was at the doctor’s office and needed to go to the hospital right away. He believed that this was not months of resistant mono but lymphoma.

From that day forward our lives were trading days of chemo and radiation treatments.
Lane and Linda lost their hair together. They were sick and weak together. Many days they overcame together. Linda went through six rounds of chemotherapy and 4 weeks of radiation. Linda is currently and continually fighting the side effects this treatment has plagued her with.

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Linda and Lane (early summer 2016) trying on wigs for upcoming chemotherapy. 

We love you Linda.
Keep Fighting!

So there it is…

It has taken me several weeks to get this post written. I sit here to finish this post because my sweet girl had to go into the ER tonight. Her counts crashed and she is in a lot of pain. They will put her on morphine and probably give her blood transfusions. I was holding one crying child in my arms and waving goodbye to another as she was whisked away to the ER. She rolled down her window and cried,  “I’ll do my best Mom” and the frigid temperature left her breath in the air for another moment…I know you will Lane.

We have found a new beauty in this broken life. We have even seen incredible parallels that allows us all such comfortable tangled connection. However the daily battles of difficult news, sickness, scans, pain and deterioration is so very hard. We rarely have a reprieve. I admit I write this last portion in a sad place.
I’m so sad for my sweet child that has fought like a mighty warrior. Tonight she is hurting and so are many of the people I love.

I know you will read this and pray for us.
For my sister and nephews and niece.

For my dad as he navigated this new reality with a woman he will celebrate 50 years with in April.
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For Brandy, her siblings and whole clan of people that love Linda dearly.

You are why I continue to write these updates. We feel your prayers. Please continue to pray for us…

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Oh, did I mention that we got out of our rental in June to follow a dream and we currently live in our friend’s basement?…another post for another day friends. .

Just Breathe

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My beautiful girl right after recurrence diagnosis.                               Photo credit:Harmony Neely Clayton

 

The morning rides aren’t so bad. We know almost all the songs by heart on our favorite radio station. To date Lane has completed 21 of 25 radiation sessions. In all treatment combined Lane will have endured almost 50 sessions of radiation therapy.We roll into our parking spot labeled radiation/oncology  and double check our essentials.

-Jacket
-Blanket
-Chicken

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Lane and Snowflake.

We only wait for a few minutes until Lane is summoned by our favorite radiation techs. They always solicit a smile from Lane as they say hello to snowflake and offer Lane encouragement for the mornings treatment. She climbs onto the table and is always offered a warm blanket. I hold her arms as she cuddles snowflake while they bolt down the mask. The first go around was monumental (you can read that here) but this time was a thoughtful decision to endure her treatment awake. Her first treatment was the hardest. As the mask was bolted down and I tucked her blankets up she put her hand on my face and we waited moments in silence. As she closed her eyes and tears spilled outside her plastic mask I began to severely question my blessing of this barbaric contraption.  I chased those costly tears with my shaking finger and thought how earned and precious they were. I have never been so thankful that those tears are held and counted by my Jesus.

She took a deep breath and told me she was ready.
She has since conquered every treatment with a smile!

Radiation is actually a smaller part of this pictures. She endures chemo treatments that put her in the hospital for about three days. Usually her counts drop so significantly by the following weekend that we are back in the hospital for several days. Our experience this time is drastically different than her first treatment. We have had many low days and some high ones. We’ve learned to enjoy and delight in the little things because sometimes bad days just seems to be inevitably perpetual.

I have found to my great challenge that being thankful is the answer…and by great challenge I mean GREAT CHALLENGE. However, when I lift my head and let the dust of life settle I can see goodness.

Thankfulness

-I’m thankful for the people that make Lane smile.
-My beautiful girls and enduring husband.

-The art,jewelry,music and science volunteers that help make the hospital fun.

-Polly Schindler, through the loss of a beautiful child has helped so many other beautiful children in their fight against cancer.
-Denise and Mike Maxson, ACCOIN, for always offering a kind smile and always giving a helping hand.
-The nurses that really work hard to get Lane home and offer their compassion on hard days.
-Free icecream for breakfast! Seriously, that was a great morning!
-Rooftop deck for Frisbee even during chemo.
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-Friends and family that call and text support.
-Encouraging gifts from sweet friends.
-My bible study Monday and Tuesday! (Love,Love,Love)

-The Portland Zoo that arranged for a behind the scenes tour of the elephants(incredible!)
-Weekend trip to the ocean with our best friends.

-A friend that has spent countless hours watching and loving on my children while I am at the hospital, appointments and treatment.
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-We have today!

And I could go on and on…
Yes, this is hard but we still have so much to be thankful for. The very top of my list however is all of you. You pray constantly for Lane and stand in the gap for her on a daily basis. I used to believe that Lane was just an incredibly strong-willed child that somehow managed all of this. I still believe that but I believe it is supernatural. She has been given a blessing of steadfastness. I believe it is because of our persistence before the throne of God.

Thank you.

We have a couple more days of radiation and two more rounds of chemo.  We are closing in on the finish line.  We don’t talk about the odds or the possible outcome but we love deep and we know that God sees us, hears us and loves us.

Breath,just breathe
Come and rest at my feet
And be,just be
Chaos calls but all you really need
is to just breathe
-Jonny Diaz

 

Valley Doors

How did we get here?

A moment of powerful dreariness comes over me and in a flash. I feel the last few months in one deep breath.

This sleeper chair is so big and awkward it’s hard to get close to her bed. There are jewelry beads and throw up bags inches apart.Her hair is gone. Again.

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The moment we saw that bump…yes,bumps. You know, that word has changed all meaning for us. The word sends us jilts of hot fear and anything resembling a bump has our full attention.

That night I knew. I knew what it was. I knew it was back.

We saw that bump ten minutes before bible study on a Monday night and haven’t stopped scrapping and fighting for hope,direction,peace…healing.

Fumbling over our first few weeks of Lanes recurrence we kept all of our options open. We had already done 2 surgeries, 42 weeks of chemotherapy and over 4 weeks of radiation and her cancer came back in about six months. Insult to injury was the fact that they had missed the growth on the previous scans.

Navigating the emotions of asking Lane to return to a battle that shows no mercy to children was…is…awful.

We needed a miracle.

 Sitting in our room at the Ronald McDonald house in Phoenix, Arizona we made our final decision. The door had finally opened…the cure was ours.Twenty-Four hours later we were in Monterrey Mexico. We would be leaving here with a cancer free child.


-Ray-

The connection with Ray seemed providential and unexpected. Greg met him through a sales call at work.  He personally knew of a stem cell researcher who was doing some incredible things with cancer patients. So much so that he had developed his own formula and stem cell technology to eradicate disease.

Ray shortly became a link to our best hope. He would call,text and email Greg constantly.
As newly minted ‘Truth About Cancer’ believers we were cautiously optimistic about this new information we were holding. Was it possible that a cure was out there? Ray anxiously vouched for this treatment and lavished words of praise onto this doctor.Every phone call brought more hope. Every text solidified our decision. Especially since they were paying…

 

Our motto was always to keep moving forward. It finally seemed like the money would be in any day but…the bumps. The bumps were back. We were seven weeks post surgery and we could see something brewing.  We thought by changing her diet,consuming and applying essential oils and taking an array of supplements that the beast would relent.

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We had run out of time. 

In Phoenix we learned that indeed her tumors where already growing back. We had reached the end of our tether. We were at the edge of sanity and emotionally holding on by fingertips.Day 4 of radiation we were told that she probably would have permanent hair loss and would lose her hearing.

“No”

I could no longer control myself. My sobs were more than my husband could bare and we leaped over the edge together.

Every decision we made was agonized over,prayed over and discussed in length.
If there was a cure…
If there was a way…
Our door would open in a way we didn’t expect.


-Dr. Alfredo Juan Estrada Cadena-
As Dr. Estrada explains, his delivery method is correcting many known ailments with patent-pending treatment, that is “repatterning DNA” to lock in the STEM CELL TRANSPLANT, for immediate results often in 30 minutes or less. – http://www.drestradastemcell.com

We had abandoned our treatment in complete hope for a miracle.
We were all fighting for the very breath of this child.
My family had opened the door…we no longer had to wait for the funds to arrive.
My father took out a line of credit on his paid off house.
My brothers and sister took money from their businesses/savings/stocks.
The next morning we were sitting in a hotel in Monterrey, Mexico having breakfast with the man that would save our daughters life.
$24,000 of the $60,000 had been wired to him that day.

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This doctor would reprogram the DNA of the tumor and correct it. He would take her stem cells and reproduce them, correct them and replace them. Followed by his patented M-174 (As Dr. Estrada explains, “M-174 targets cancer cells that “over express,” or make too much of a protein called HER–2 or erb B2, which is found on the surface of some cancer cells. M-174 attaches to the HER–2 positive cancer cells and slows or stops the growth of the cells. M-174 is used for cancers that are HER–2 positive. HER–2 positive cancers over expresses the HER–2 protein or has amplification (too many copies) of the HER–2 gene. In layman’s terms medical doctors now have a means to instruct aggressive cancer cells to become dormant cancer cells with an inability to feed and grow.” -www.drestradastemcell.com


-The After-

The handwriting was creeping up the wall the moment we met him. We walked on eggshells and tried to reason with his unreasonable requests.
We lowered our bar to “Mad Genius” all in hopes of receiving the treatment we had been promised. After all he had looked my girl in the face and told her she would leave cancer free. He told her no more neuropathy and no more doctors.

He promised her a cure. 

An open letter to Dr. Alfredo Estrada-

Hindsight is 20/20 and now I understand you work in shock and awe. Your robust precision in manipulation is astounding. You had us. Hook, line and sinker. Did you think we would not ask questions? Is this why your anger would accompany you into the room and yell at us for talking with the nurses. You do not know our fierce love and dedication for the whole healing of our girl? That we would carry this lie and mask our doubt with deceit? I was with my girl every moment of every day. I was up every time a nurse entered the room taking note of every medicine she received.
No one wanted this to be more miraculous then us!
You took the cultural barriers and used it to your advantage. You hoodwinked all of us. 
I’m guessing your plan started to fall apart when an actual pediatric oncologist got involved. Were you surprised he spoke english? I’m guessing by how you continually dodged him the answer would be a yes. Remember when you rushed us out of our room to tell us the tumors were centimeters from her brain? That we must do treatment or she might not make it home alive? We only put it together later that little show was because the other doctors hadn’t assembled yet…that and the fact that it was a lie. We saw the CT, well, after we cried our eyes out for a few days.  Of course, if we would have went home then how in the world would you have kept the money? Thank goodness for that curve ball oncologist…the one that specifically said that we received no medicines that didn’t come directly from the pharmacy. His exact words were “nothing was cooked in a lab”. How do you reconcile this?

Remember the speech about how you were for us…The oncologist said we needed a primary care doctor to watch over Lane after her treatment. You said you would find a great doctor in Spokane. We were so excited that you found someone that was on board! Remember, how she was excited to see us and be a part of this awesome treatment?

I won’t forget the look on Greg’s face when he called her office later that afternoon and he mouthed  the words “never heard of him”. 

We specifically agreed to get chemo in Mexico because you said you would follow it up every day with your treatment. Your treatment would make her strong and recover and more specifically do what chemo couldn’t and fix the cancers DNA.
-The first night it was the wrong temperature.
-The second night someone mixed it wrong.
-The third night the chemo ran too long.
Calling and texting us to stop asking questions was not a good move on your part. Making fake letters from the hospital to intimidate us into being quiet…also not a great move. Especially since Greg took a picture of the letter before you ripped it up. 

The administration of the hospital was not too happy with your con. I suspect that’s why we never saw you again. 
So all in all we received one treatment of your suggestion. This treatment consisted of plasma from the pharmacy and Flebogamma…also from the pharmacy. 

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We called you. We asked if we were receiving your special treatment. You said yes, that today was the day that she was getting her M-174. Did you know we took pictures of everything she received? Did you know we looked everything up and documented all of it?
Also, Cambridge has never had a student registered under your name. I can’t find your name on any Nobel Prize website of nominations or winners. Oh, and the US Embassy has all of your information.

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Dr. Alfredo Juan Estrada Cadena

You are a fraud. You don’t deserve to be in any picture with my girl.
However, this picture will be used as a beacon of warning to anyone lured by your illusion.
We will continue our story and run our race. You have not stolen our spirit but embolden us to truth. We win.

-Most Sincerely,
The Sanwalds


All in all he took $24,000 for a treatment that cost about $10,000. That $10,000 would have been covered at home under our insurance for chemotherapy treatments. We received no special or life changing medicine.
In addition:
$300 for blood tests
-$1,000 for expedited passports
-$4,000 for plane tickets
-$500 for hotels
-3 weeks away from our children and 3 weeks off of work.

When trying to follow the Lord we look for doors, right? Doors that open and close…if not a door a window? If the doors are closed then wait in the hallway, right? We perceive open doors as bright and shining conclusions.

I am confident in one thing. We followed the Lord and He did direct this path. Our door was open but it was a hard, dark path. None the less the right one. I don’t understand but my faith can’t be contingent on my understanding. Just like the Lord’s plans aren’t contingent on my degree of faith…He loves me in my pain and doubt.He’s still moving even though I am standing still.

Thank you for all of the text,emails and phone calls of love. Thank you to Brandy and Bill Ellis for watching our children for three entire weeks and as we continue further treatment. You are amazing.
Thank you to my family…words aren’t enough.
Thank you to my friends who’ve sent sweet gifts and cheerful messages.

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Thank you Lane for your resilience and strength.

Let’s do this one more time baby.

Fight or Flight…or both.

Seven oncologist, radiologist, surgeons, five states, four consultations, what seems like hundreds of calls, long drives, faxes, emails and overnighting records and we’ve finally started a plan.

FINALLY.

The first time around this all seemed so formatted and conclusive. Dumbstruck and broken of course but we stepped into a deeply tread path of the many families before us. Our eyes red and mouths gaping we agreed to the whole deal…just save our baby.

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Lane 2014 shortly before diagnosis. 

These last few weeks I have seen a father fight for the life of his daughter. My husband has spent hours on the phone with any doctor or nurse that would hear him. He has walked out in the middle of appointments that have offered complete hopelessness and obvious indifference to call an office that has Lane on a waiting list and beg to be seen sooner. I mean, red faced and tears screaming down his cheeks for someone to listen.  More precisely to care about his girl. To have an ounce of compassion on this little life. He’s chased every lead and forged a new road for us. He’s slept on the couch so I can be close with Lane when the days seemed especially dark. He’s combated coldness and derision from even the most unlikely but most painful sources.He’s taken quite well to being the squeaky wheel and he’s practically a professional at leaving voicemail’s.

Greg -this, my fierce warrior, is your finest hour. 

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Greg at his usual post next to Lane at her most recent bone scan. *Which came back clear!*

There are currently no trials available for Lane and the protocol is to do everything she did last time. We have fought to do radiation first because the cancer did not come back in it’s original spot. It came back regionally in her parotid gland and did not spread to any lymph nodes. As I’ve mentioned in my previous post a 3% survival rate was given to Lane with chemo and radiation therapy.

One night I told Lane, “I would take every bit of this cancer if I could”.
She looked and me with crackers tumbling from her mouth and said “I wouldn’t give it to you!” It completely caught me off guard “Why is that?” I said.
“I can do cancer again Mom” she smiled and shrugged her shoulders “It’s my thing”.
I have a special girl. An amazing girl that can will herself into tremendous concentration and focus. A girl that can lay perfectly still through 45 minute MRI’s, bone scans, pet scans and CT scan’s.  She’s dumped sugar and takes loads of new supplements…all with hardly a complaint.

We have hope. Always have hope

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Hello Sunshine!

Our journey has led us to Arizona. We will be meeting with an oncologist, pediatric radiation oncologist and our naturopathic oncologist. Our hopes are to get her set up for proton beam radiation and see what other treatments are available. If this is to all work out we will be staying in the Ronald McDonald house in Phoenix Arizona for 4-6 weeks.

I don’t know where this will lead. I don’t know how much it will cost. I don’t know how much we can push and I don’t know what the outcome will be.

I am convinced that God is able to do that which he has promised.

He has promised:
-to love us(John 3:16)
-to guide our steps(Psalms 119:105)
-to hold all of our tears in a bottle(Psalms 56:8)
-to hear our prayers (James 5:16)
-that the Spirit will intercede when my pain is too much to bear(Romans 8:26)

Your prayers and support are vital to our lives. Please continue to pray for my girl. The Lord is not done yet and neither are we. Arizona here we come.

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We do have a continued campaign that will help for all of these upcoming expenses.
Thank you!
Click here: Support Laney Bug

 

“If we’re going to fight a disease,let’s fight one of the most terrible diseases of all, indifference.”-Robin Williams,Patch Adams.

Pitch Black

How do I re-open a chapter that was sealed and closed? I mean, it was really sealed,locked and chained in a chest in the depths of the ocean. Two words. Two words scrambled time and stole our breath.

It’s back.

The ultrasound showed three spots in her paratoid gland. We had been assured for weeks that this swelling was simply a side effect of radiation. My gut was heavy with fear…that old familiar cold flash of fear that races through me like liquid lightning. The only words I can precisely remember saying was, “It has to be a mistake. You are reading it wrong.”  Our surgeon hung his head and said he was sorry. Tears filled all of our eyes and the moments were long and bitter.

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This monster that she had slayed was moving back in. Only this time his bags are bigger and his threat is severe. 

After several tests to rule out metastasis the surgery was scheduled. Now, I can’t convey how scary this procedure was. Our surgeon, whom we love, had a massive job to do. He explained all of the complications and concern for the nerves in her face. Simply put, Lane could lose facial function on her right side.

So, as if this  cancer hadn’t already taken enough now it demands more. The night before the surgery I found myself in a very familiar place. Looking and Lane wondering if she would be the same after the surgery. Soaking in her smile and watching her eyes blink. Taking in her laugh as she throws back her head and her mouth wide open with gasping glee. How can this be that we are here again? Lord, how can this be?

The hours ticked by and we went back and forth if that was good or bad. We anxiously looked up at every person that passed the waiting room window waiting to see our doctor. Finally his blue scrubs flashed by and we rushed out to the hallway to meet him. He looked exhausted but a tiny smile crept to the corner of his mouth. He was able to get the tumor and retain ALL of Lane’s facial functions.

One big win! This pitch black diagnosis has one win under it’s belt. 

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I wish that this was the end of our new chapter. I wish I could chain this back up and throw it back to the depths of the sea where it belongs. I hate that I can’t.

I hate that we have just started to fight.

We are fighting an seemingly insurmountable mountain. Not just this cancer or the 3% survival rating that accompanies this reoccurrence but we are fighting treatments, parental rights and indifference. Frankly my friends, the doctors aren’t giving my fighter much hope.

Alas, I know the Great Physician and he knows me. I am sad, confused, empty and sometimes afraid but I ALWAYS have hope. Thank you to all of the family that has flown out to be by our side. Thank you to our friends that have held our family together with your kindness,meals,babysitting and prayers. A very special thank you to my BF Brandy Ellis for not skipping a beat even when her own mother(Linda) was diagnosed with cancer last week.

Thank you churches and people of God for fervently praying for my girl.

There wasn’t much elegance or beautiful word pictures in this post…I have started and stopped several times. Our hearts are broken and we are very sad. We have a phone consultation on Monday with our 4th doctor and that may be our last ray of hope.

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Please,think of my girl and pray for her.

Also, our family has set up a go fund me page. There is no pressure but if you are willing we would be grateful. Thank you.

(click here to be taken to the donation page) go fund me

 

Catching our second wind…closing in on the finish line!

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How many days til I’m done with cancer?”

That’s a question Lane asks almost every day. We’ve had a countdown going for quite some time now. Some days it’s because she really wants to go to the McDonalds playhouse and some days it’s because she’s tired of being tired. But it’s always because she’s excited!

We have 4 treatments days left.

Today she is on day 3 of her 5 day and after this she has two weeks off then her very last all day treatment.

4 treatment days left.

We started this scared, afraid but always hopeful with a full 42 week treatment cycle and four weeks of radiation and we are down to 4!

After her scans at the end of June she will get to ring the Cancer Free Bell…I think of that bell often. I remember our first overnight treatment and seeing a gathering in the hallway for a little boy who got to ring that bell.

One of the sweetest sounds in the world and I can hardly wait.

These last few weeks have been so tedious, because we are so close. Lane is tired and has to nap often but I know as soon as those eyes crack open that she will ask in a crackly voice, “Can I go play outside” or “What kinda snacks do we have Momma?” No such thing as cancer that can keep my sweet girl down, well, not after her nap anyway!

One thing that has changed in our life is that we simply live. We get off the couch. We shut off the tv and put down the phones and we live.

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Circus with some of our best friends!
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Park dates with more friends!
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Planting seeds with the neighbors!
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Camping?! Yes, remember we were doing new things and living life -note to self.

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Movie birthday party with even more friends!
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Emmy, Emmy, Emmy!
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Bonfire and Blizzards Sunday!

We’ve accomplished many things this year not despite cancer but because of it. We’ve made decisions to lose weight, start a business, change habits, work hard and play often.

Not because we fear death but because we see the value of life.

Because God gave us this life to share together and we want to do it with no regrets and to the best of our ability.

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Last night after dinner with the neighbors(we love them and yes they have actual names but we can’t seem to escape just calling each other the neighbors) we all decided to go on a bike ride. With Emmy and Lane cozy in the bike trailer we set off on a wonderful evening of exploration and it was beautiful. It was perfect. It was a gift.

LAST DAY: June 8th is coming…if you need to practice clapping, crying or screaming with excitement now would be a good time!

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End in sight…June 2nd

First thing’s first..I’m sorry! I can’t believe it’s been so long since I’ve last updated this blog. Thousands of thank you’s to everyone that reads this blog faithfully and follows Lane’s journey. I would like to start by sharing our last few months with all of you.

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We rooted for our team!   *It didn’t end well*
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We played in the snow. Once.

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Emmy is swiftly becoming a selfie pro!

We celebrated a very big 5th birthday for Lanie Bug!!!!

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She’s had chemo ever Monday and we’ve completed several 5 days (she goes in Monday-Friday for chemo) and an overnight. We officially see the finish line and our last day of chemo is June 2nd.

JUNE 2nd!!!!

These last few months have been pretty smooth for us and we’ve immensely enjoyed the quietness of this season. Lane had an MRI and a CT scan which came back clean as a whistle. Our joy comes with the perspective of the beginning of treatment, which was extremely dark and unknown, to a world where she’s doing…good. She wears braces to stabilize her feet from the effects of her neuropathy. She lost her new hair growth and has some puffiness in her face from radiation BUT she is doing good.
Last week she had chemotherapy every day. She got sick almost every day in the hospital BUT on the way home she ate 2 cheeseburgers…every day!

Most days for Lane are good days. Most days we thrive. We are so very thankful for that.
I am 100% sure on one thing…God has honored your prayers for my daughter.

Thank you!

 

Mountain top Christmas.

Well, she did it!!  4.5 weeks, over 100+ hours in the hospital of radiation and continued chemo.
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The nurses for radiation oncology at Spokane Children’s Hospital were outstanding. Thank you Marcy for dedicating every moment to making her comfortable and assisting in a smooth process every time. Kari, your ability to make her laugh and provide a safe atmosphere for her will always be remembered.

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We also would like to thank the staff at Pediatric Surgery/ Recovery at Spokane Children’s Hospital. Lane was sedated every day and had to recover in the Surgery center where her nurses, Camille and Greg, met us each morning with a smile and a fast process to assure Lane’s best outcome.

So here we are…DONE with the gigantic monster of radiation! My girl endured 23 treatments of radiation and 10 days of chemo during the last 4.5 weeks.
I’m so very thankful to the Lord for softening the memories of those jagged mornings. My little girl definitely helped me to understand the possibilities of a person who is unshakeable!
Even though Lane still has many months of chemo ahead-

She taught me that just because we may have every reasonable excuse to be broken…we don’t have to use it.

That’s what makes this Christmas so very special. Life is amplified! Through the depth of pain we’ve felt the pinnacle of joy!
So, in preparation for sending out our yearly Christmas cards I set up the props, my girls donned pretty outfits and angelic pictures ensued…

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Nailed it!

Ok, so I might have been a bit frustrated at first. It sure is funny now! I’m so very thankful for these little girls. I’m thankful that God picked me to be their mom. I’m thankful Jesus loves us…so much that he was born to save me, and my girls…and you.
This year as I study the faces of my children, hold my husbands hand a little tighter and squeeze every minute from the day I will remember:

Our real gifts this year have been presence-
The presence of our sweet girls.
The presence of amazing friends who dropped off dinner.
The presence of family who jumped on a flight.
The presence of neighbors who accompanied me to the early radiation appointments.
The presence of PRAYER…thank you to all who are on their knees for our girl!
The presence of letters that continually encourage us.
The presence of a Living Savior who is our daily Hope.

Happy Birthday Jesus
Merry Christmas