overwhelming costs & fundraising

A medical fund has been set up for Dane at the suggestion of some church friends.  We have been blessed beyond measure by our family, friends and our church family.  I can't imagine this journey without their abundant support.  We have been here in this cancer fight for so long and the cost of it all has become overwhelming. 

The financial expenses of hospitals, chemotherapy, prescriptions and travel, of course are costly.  I am asked near daily why we must travel to St Louis from Wichita.  So here it is:  Sarcoma makes up just 1% of adult cancers, so we're probably lucky to be just 8 hours from an oncologist specializing in it within the Midwest.  With just 1%....what progress will there ever be if the one-in-a-millions in the world don't combine knowledge and experience?  So we incur the costs to travel to the doctor in which Dane has the most confidence and who is conducting his own sarcoma research.

When I refer to the overwhelming costs, it's not just the finances though.  Dane's pretty much been in some form of treatment since 2007.  We are embarking on year six of this and the physical, mental and emotional costs are certainly taking their toll.  He is weak and tired, the forgetfulness of chemo brain has us repeating conversations much more frequently.  We all are weary.

So now we are to the point of a fundraiser.  We are selling t-shirts for $10 that are emblazoned with Romans 12:12. 
Now while Dane's cancer is rare, cancer itself is not.  I designed the t-shirt to hopefully be a support and encouragement to many beyond just our family.  I even included pink!  The yellow is the awareness color for sarcoma and rare cancers.  Orange represents leukemia and I wanted to honor our young friend who has been battling alongside Mr. 1inamillion for far too long.  The awareness ribbon itself is just an outline, because I believe this verse is perfect instruction in the face of any battle. 

We have hope not only in medical science, but in Jesus Christ.  Healing will happen through him.  If not on this side of Glory, then certainly when we are by His side.  It is with that hope and the continued examples of His love here that we can continue to be patient in our journey and faithful in our prayers. 

I look forward to seeing that message on friends and others we have yet to meet.  What a cure for the weariness that will be.  I imagine dragging tail through the grocery store, in my often exhausted beaten down state, Things 1 & 2 begging for something or running recklessly down the aisle and encountering Romans 12:12. What a beautiful reminder of the message of Christ and the goodness of His people. 


If you would like to order, feel free to message me.  Orders with payment can also be mailed to Dane Daniel Medical Fund c/o MUMC, 107 S Central Ave, Mulvane KS 67110.  (If you are outside of the Wichita area, please include $5.00 for postage so we can ship you your shirts priority.)

update

Dane is in St Louis and started another new chemo today.  A dear friend from church has taken chauffeur duties for this trip so I am at home with the kids and the pack.  Gabe just walked through the door playing something annoying and electronic.  Lucy is in the front yard in a swimsuit playing with water balloons and a gang of neighborhood girls.  The pack is scattered across the messy living room floor sleeping.  Her fence jumping days behind her, that's really all Britney does these days.  I am reclining in Dane's chair, whining about the headache that refuses to go away and now typing away on Dane's computer.  Typing what I see is my first blog post in seven months.  Oops. 

In my defense, our family computer is fried and I haven't bothered to get it fixed.  It is the one with my comfy ergonomic keyboard.  My carpal tunnels don't appreciate much time spent directly on a laptop, so I've given myself a pass anytime I've thought about blogging. But I've been busted,which I guess is one of the purposes of friends.  (I will dedicate a future post to her, I promise) 

Since my last posts, I did complete the half marathon in October.  In November I managed to mess up my back and haven't been able to get passed it.  I have since sunken into a funk, laying on the couch binging on cookies and junk food watching TV when I used to work out to deal with my stress.  It's not been pretty.  I have managed to expand beyond usually expandable yoga and sweatpants.  The good news is I have eaten through all of the Girl Scout cookies so it must be coming to an end.  The bad news is I have nothing to wear in public that should in fact be worn in public. 

Last fall Mr. 1inamillion's cancer progressed a bit so he was changed to a different treatment regimen.  It was not surprising as he had remained on the same one for nearly a year and at some point they all fail.  He was changed to one that was just oral pills, a nice but short break.  There was growth with the next scans so in January he started a new regimen, one lovingly known as the red devil.  He landed in the hospital after his first treatment and again with his third.  This time it was pneumonia and RSV virus (yes, that one that babies get).  This chemo had proven to work, he was on it with another drug in 2007 with success and it showed successful again on the biopsy done last October.  His scans last week only showed minimal growth (within the margin of error) so it's considered stable and responding to the drug.  The ultimate goal is to of course keep him out of the hospital and well, so in that respect it is clearly failing. 

He spent 15 days in the hospital with the pneumonia and came home still on oxygen.  Surprisingly, not one member of the pack has done a thing to an oxygen tube and I overcame the anxiety that came with it rather quickly.  He's pretty much been in treatment of some sort since 2007, so it is getting harder to find therapies that will work and harder for him to handle them.  The drug he started today will hopefully be easier, but they all seem to list the same side effects. 

This will need to suffice as our update for now.  The gang of girls with water balloons out front have taken on a gang of boys and together they have woken and riled up the pack.  I think it is time to find excedrin, my referee whistle and a super soaker.  I pray I don't come across any cookies along the way. 

The Whole Works

“Don’t you see that you can’t live however you please, squandering what God paid such a high price for? The physical part of you is not some piece of property belonging to the spiritual part of you. God owns the whole works. So let people see God in and through your body.” 1 Corinthians 6:19-20 (The Message)

The whole works. Fibromyalgia and all, it is God’s. The tender points that just feel bruised all the time, the over sensitivity to everything, the foggy brain that struggles to communicate a complete thought or remember names, events and the entire to-do list. Every single joint from my shoulders to my toes that scream when the weather changes, stress gets to be too much or sleep is disturbed. All of it is His, as he created it to be. The whole works.

As you have perhaps read in previous posts, I am running a half marathon in October. A marathon is 26.2 miles, half of that is 13.1. I’m breaking that down so you see that A.) ½ is still a whole lot and B.) I’m not as crazy as I potentially could be. This morning’s jaunt was 4.1 miles and it took me 59 minutes. There was pain every time a foot hit the pavement, from the very first step. I completed 7 miles on Saturday and still haven’t recovered from it. Part of the whole works, Fibromyalgia is with me every step of the way. On October 9th, I will venture out among ‘real runners’ certain I can complete 13.1 miles, however slow I might be.

We are created in God’s own image (Genesis 2:27) and I know that “I can do all things through Christ who strengthens me” (Philippians 4:13), so surely I can make it 13.1 miles on my feet. I am running to raise money with the American Cancer Society’s DetermiNation program, but that’s not the only reason I am pushing myself. My Fibro places limits on how I do things, but not so much on what I do. We can learn to manage and accept the hand we’ve been dealt and still push to reach new goals. I want to be an example of that, to let people ‘see God in and through my body’. The whole works.

Chemo week & making a difference

This week we traveled to St. Louis for Dane's scans and chemo treatment. Good news. His scans were stable and he will continue on the same regimen. Dane has been on this schedule for quite a while so there are several familiar faces.

A sense of community is nice, but it is tough to make friends at a cancer center. Cancers are incredibly different, treatments vary greatly and so do the outcomes. You may get to know some who are blessed with remission and get to ring the bell and run free. I'd be lying if I said there isn't a twinge of bitterness. We applaud when the bell rings and cheer, seeing that it is possible but still long for it to be Dane. Making friends with others whose news is worse...sucks. What do you say? When what you are really honestly thinking is thank God it's you and not me. And please, God, don't ever let it be me.

A couple with whom we have spent some time in treatment got bad news this week. He had some new growth and they were told one to two years. It sucks. It sucks. It sucks.

Thing 1 was with us on this trip and he asked what was wrong after the wife had parted from the waiting room. I told him her husband got bad news that his cancer had grown. Gabe got frustrated and said he hated that all he can do was a stupid bear drive. The bear drives he has done with school both in Douglass and Mulvane for Victory in the Valley are not in the least bit stupid, and I am so proud and overwhelmed by his kind, tender heart. Cancer is so out of our control and it sucks. We want so badly to do SOMETHING, anything, to help the ones we love and those we see suffering.

We pray. It is the most powerful thing we can do and I have seen God respond in amazing ways. Still, we long to do more, any little thing we can to make a difference. So I am running a half marathon as part of my company's national DetermiNation team for the American Cancer Society and Thing 1 promised this week to help with the fundraising. It is a tiny effort and it sucks that it's all we can do. After three days at a cancer center, I am so grateful for my ability to walk and run, slow and painful that it may be. I am also so grateful for our answered prayers and our kind hearted Thing 1, excited to make a difference.

I'm running 13.1 miles?

Oh Dear Lord,
You saw me do that, right? I must be crazy. Why didn't you throw a page error my way to stop me?

In the absence of 'page can not be found', please Lord, can you give me strength and endurance? Please bless me with peaceful time each morning to train for this. And friendly weather on October 9th?

Please bless me with friends and family who understand my crazy and will support the cause. Because surely there is a reason and a blessing in store for this madness? I continue to trust You, God, that there is blessing in Mr. 1inamillion's suffering and I thank You for his determination. I pray that there is blessing in store for my DetermiNation as well.

Amen.