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 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.

2013-07-31 03.28.00

The Diagnosis.

 We didn’t really know what was happening. I think it’s because it was such a casual phone call. Maybe because it was the combination of positive phrases that made us devour every ounce of hope? I’m not sure what I was expecting that morning at the pediatric oncologist office but I know what I got. Ache. A very matter of fact answer. Your child has Rhabdomyosarcoma. She will need a year of chemotherapy. With treatment a 90% chance of recovery. Still waiting on the consultation from Seattle but they think it’s embroynal- the less aggressive form.

Blank stare. The only question I could think of was, “Will she lose her hair”?

“Yes, she will.”

I managed to hold all of my numbed emotions until that answer. She will lose her hair. Such a visible sign of the inevitable. I hung my head and cried. I couldn’t think of even one more question to ask. Greg faired a little better than I and managed to get some basic questions answered. We were told she would have some tests to determine if it had metastasized and what type of Rhabdomyosarcoma she had. After the doctor left the room we needed a few minutes to collect ourselves. Yes, “collect ourselves” collect the former life shattered on the ground of that office the moment those words were spoken. We cried all the way home. We didn’t say too much on the drive home, we couldn’t. Lane was with us. She had to go with us for an exam. She was excused to the playroom while our world fractured . She was playing with toys, laughing and singing while we wept.

Oh God, please heal my girl. OH GOD please take this away.

God’s gentle reply that day was, “I’m Here”

The days following that appointment were hard ones. We tried to live in the moment and enjoy the precious seconds with each of our children. Belle handled it very hard (she still does). Belle is a very softhearted little girl. She was very angry in the beginning, not knowing why we continued to take Lane to these doctors that hurt her. How can you explain something to a 5 year old that we can’t grasp ourselves? We couldn’t even find the words to pray. Save our daughter Lord! Make this all go away! Give us wisdom! I am grateful for my sister, Tracy, who reminded us that when we don’t have the words the Holy Spirit is constantly making intercession for us. Thank you Lord!

A lot of people have been praying for Lane from the birth of this story. I am so very thankful. Those prayers kept us afloat many hours, days even. God constantly reminded us that he was with us through prayers and genuine love from His people.

The weeks following Lane’s diagnosis she had an MRI, CT scan, Bone scan, Bone aspiration, Pet scan and several blood tests. Oh, not so bad, right? She will just have to lay in a machine and get a few pictures and go home? Yes, maybe for an adult but a child is completely, heartbreakingly difficult. Lane had to be sedated for every test. Yes, every test! She hates needles (like most kids) so an IV was a nightmare for her. Our nights before the tests would consist of Lane crying and begging us not to take her.  “No needles mommy”, she would sob as we tried our best to distract her from the early mornings events. It was a twisted thing really, we smiled and said it would be ok but inside we wanted to take her and run too.

IV’s, in the beginning, always led to the “goofy meds”. Medication that made her, well, goofy.  The first time she had this medicine it made her so spacey, not my Lane. It made me cry because it was so bazaar. She hated it too. She eventually realized what the medicine did and instead of putting her at ease it made her afraid because she felt out of control. I’d like to say that even after this medicine everything went without a hitch but I guess that’s just not reality.

Just a few snapshots of those moments:
-She woke up during her CT scan, completely terrified and crying for us.
-I had to leave right before her bone scan because I was !losing it! and couldn’t stomach seeing her like that. “Mommy, where are you going” she cried as I plunged into the exit door and grabbed the closest chair.

-She had a very large hollow needle put into both hips for her bone aspiration to draw marrow and take a sample of bone.
-She had to sit still for one hour while the radioactive serum circulated her system. (that was tough but the manger of the department was awesome)

Finally, done with these tests.
Ct scan- CLEAR
Bone scan-CLEAR
Marrow-CLEAR

Amen, Amen, Amen it hadn’t spread! Praise God, it’s no where else in her body! The next step was the surgery for the port but
with all of this hope from these test that came back clear we really started to think…what if it’s a mistake? What if the pathology came back from Seattle and it was read wrong? We searched for hope in waiting for that consultation and final pathology report to come back.

…and so we hoped…

No regrets…right?!

So, here we are with quite a story these last 8 months. I’m cooking organically, appointments fill my calendar, the weather today is absolutely lovely and my child has cancer. Yea, I wish it was a game…which one of these statements doesn’t belong with the others? Well I suppose I should rewind and fill in the details of those jam-packed sentences.

Last year  Greg and I were itching for a change. Usually for me it’s nothing a little Home Good’s can’t fix but this was different. We started to ask ourselves… can we really do this? Do we dare? I always wanted to be a skier. I’ve only been a few times but I loved every freeing minute of it. We really wanted to simplify our lifestyle. Getting out of the grind and into the fresh air seemed so appealing. Through a series of different events we found ourselves sending resumes to Idaho,Washington and Oregon. We were living in the suburbs of Chicago, had a beautiful home, friends, family and well… a job.

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(Picture from last years Seahawks superbowl win, you’re welcome Greg)

The thought of ever selling my house and renting again made me panicky inside. We had worked so hard to get where we were and no reason to give it all up, right? So, we decided that if God wanted us there that we wouldn’t push open any doors. We would only put in the effort and God would direct that effort wherever He wanted. Let’s make a long story short. God showed up. He showed up big. We sold our house and it funded our dream of all things outdoors! We were going to be a skiing,biking,hiking,camping family. Job-check. House-check. Travel across the country with 3 kids in a minivan…check!

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So we did it! We packed up our stuff(4 Uboxes, 30 hr. drive, 2 hotels, 10 million coffee’s) and moved across the country to Post Falls, Idaho.

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We loved our new place and it’s serene mountain view. Many things to do, we planted fresh flowers, cut the grass and started unpacking.  Just one little pesky thing on my mind. Lane’s bump. *Rewind* See, Lane has this bump on her face that showed up after a birthday party. “Oh my goodness, what happened to your face Lane?” I said to her the next morning. “Oh, I wasn’t watching where I was going and I ran into someone at the party.” Hmm, okay well I guess that happens right? Ok, that will settle down and go away soon, for sure. So after a month of this bump not going away I did what most parents would do. I took her to the doctor.

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“Yes, that’s quite the goose egg”, says the doc. She went on to tell me that bumps can sometimes take many months to go down. Ok, *breathe* so should we get some sort of test done? Anything? “No”, she says…”If it was my kid I would probably wait”. Well, I suppose that’s it then. After specifically asking if waiting would hurt anything (the answer was no, I was worried about a blood clot) we gathered up our things and left. Sweet, my baby is fine. We are selling the house and continuing with our  awesome journey. *Resume Present Time*

Just four days after arriving, I decided to make an appointment for a second opinion. Ok, one more appointment and maybe a test or two and we will have complete peace of mind and be done with this “bump” business. This appointment was the beginning of a new journey for us. A journey so far that has been overwhelmed with sadness, drenched by tears and infused with complete grace. God’s grace.